Chapter one
“I see two”

“I see two!” “I’m looking at two!” I yelled out while lying on the cold ultrasound table with my little bump covered in sticky gel. My husband and I intensely locked eyes. The technician didn’t answer at first, and then nodded her head slowly up and down. There’s one and then there is the other, she pointed out, while drawing little circles around the two dots on the ultrasound monitor. “What does this mean?” , my oldest daughter shouted out. “We might have two babies,” I can still remember saying to said to her while holding her tiny hand tightly in mine.

This was our second visit to the doctor since we found out we were pregnant. We brought our other two daughters, Mia who just turned four, and Juliet who just turned two, this time to show them their new sibling. On our first visit there was one baby. “What did the doctor tell you when you were here last time,” I can hear the technician’s voice shaking. “There was one baby.. only one !” , I said as she was finishing up her scan. About a week later and now there are two?! If I didn’t see them on the screen in front of me, I wouldn’t have believed it.

4 kids under 4 year old I said to myself.  I kept looking at my husband James. He was surprisingly so calm, and was smiling with his eyes glowing. He said words at that moment that I will never forget, “This is the best thing that could ever happen to us.” It was so peaceful, reassuring and full of love. It was then that I knew our babies were very special and were meant to be a part of our family.

She handed me some paper towels to clean the gel and told us to wait for the doctor.  When the doctor came in she reiterated what the technician had said. You are having twins! They printed out some pictures for us to take home, we gathered up our other two girls and left.

This was the first time I saw my twins.  I was only a few weeks pregnant.  We were not planning any more babies.  This was a surprise, a big surprise.  I had two girls two years apart.  They were very planned pregnancies.  I am so happy my daughters have each other, just as I have my sister.  We are close and live across the street from each other.  My dream is one day my girls will share the same bond.  I felt our family was complete.   With my youngest just turning two, I didn’t think I was ready for more babies.  I was in shock, but so thankful god choose this for us.  God knew my heart needed you. 

 I couldn’t keep it in and called our parents immediately.  There were happy tears and lots of excitement.  We are a big Italian family and everything is always over the top.  The thought of adding more grandchildren made my parents elated.  Along with my sister’s 3 sons and one more on the way, this would make 8 grandchildren in total just from the two of us.  She was also pregnant with a baby boy.  Later, we would also be able to tell my father in law, who was very sick, dying of cancer.  Super bowl Sunday we told him that one of our twin sons would be named after him. My son Peter.  He was filled with pride.  It is one of my greatest memories together and also, one of the last.  He passed away a few weeks after we told him.   I know that Papou is an angel watching over them, especially when they needed it most. 

We were so eager to share the news with all of our family and friends.  We announced it on Valentines Day.  The girls help us a sign that said “This Valentine’s Day is extra sweet because our family is growing by two extra heart beats.”  We received overwhelming blessings and congratulations from everyone.  It was such a beautiful time.  

A few weeks went by and I researched all the exciting things you would need as a new twin mom.  What is the best stroller, what car would we drive to fit 4 car seats.  I was having so much fun.  We were ready for our follow up appointment.  Already having two healthy pregnancies, I thought I was a pro at this.  My mother kept telling me to go to an MFM or Maternal Fetal Medicine specialist.  MFMs are doctors that specialize in high risk pregnancies.  “Twins need special care, you have to go to an MFM,”  she said over and over.  I finally scheduled the appointment.  She was right.  Moms are always right.  A great MFM is the first step and one of the most important things you can do when you find out you are expecting twins.  I didn’t know it yet, but complications can happen without any symptoms.  You can feel perfect while your babies are suffering.  Precise and skilled monitoring is the key to their survival.  

I walked in the room excited to find out what type of twins we were having.  At this point, I just wanted to know if they were identical!  However, being a Physician Assistant and having practiced medicine for over fifteen years, I knew it was important to determine if they had their own placenta and amniotic sac.  The position of the umbilical cord is also very important.  

The placenta is the main source of food and vital nutrients during pregnancy.  The umbilical cord comes off the placenta and connects to the fetus allowing these nutrients to be delivered to the baby.  All of this occurs in the amniotic sac.  The sac is where the baby lives and grows.  It’s filled with a fluid called amniotic fluid.  At first this fluid is mainly water from the mother’s body, but gradually, the larger proportion is made up of the baby’s urine. The fluid also consists of important vitamins, hormones, and antibodies.  It provides a cushion and helps to protect the baby from injury.   The fluid is important and key in diagnosing some of the most serious diseases.

The amniotic sac is where the baby grows, it’s the fetus’s home while you are pregnant.  The placenta, umbilical cord and sac are present in all pregnancies.  I think of it as a baby bottle ( placenta), with a nice big twisty straw ( umbilical cord) and the crib ( sac) they sleep in.  A single pregnancy has one placenta and one sac.  Basically each baby gets its own crib and own bottle.  In a twin or multiple pregnancy, it can vary.  If two babies are in the same crib ( sac) and trying to drink from the same bottle ( placenta) there’s a good chance that not everyone is going to get an equal amount. 

This is important to understand as you follow pregnancies of multiples.  Basically the first question you need to ask is how many sacs and how many placentas.  Then you can identify the size of the babies , if there is an even amount of fluid and if the umbilical cord is in the right spot.  

There are different variations when it comes to twin pregnancies.  Each comes with its own set of risks and benefits.  When problems arise, early diagnosis is the key between life and death.  The name of each different twin pregnancy helps describe how many sacs and placentas are present.  If you know how to speak Greek it’s easy to understand.  But if you do not, like most of us, a guide is knowing “mono” means one and “di” means two.  The next part of the word describes the chorion.  The chorion is the outermost membrane that connects the amniotic sac and fetus to the placenta.  “ Mono” chorion means one placenta and “di” chorion means two placentas.  The next part of the word tells you how many amniotic sacs.  “Mono” amniotic means one sac and “di”amniotic means there are two sacs.  Why is this so important? Because the more multiples share the greater the risk.  

Start with the ones sharing the least.  Di/di or dichorionic diamniotic twins grow similar to a singleton pregnancy.   Each baby has its own sac and own placenta.  Picture two cribs with two separate babies each having their own bottle.  The biggest difference from an only child pregnancy is that the space in the womb becomes crowded and they may have to be delivered prematurely.  

Another type is mono/mono or monochromic monoamniotic twins.  They have one sac and one placenta each.  This would be twins in one crib sharing the same bottle with two big straws.  There is a chance that the straws ( umbilical cords) can get tangled up.  It is also a possibility that not everyone is going to get the same amount of the placenta.  This type of pregnancy is at risk for cord entanglement or compression.  The umbilical cord is the lifeline of blood and nutrients and if tangled, the babies are at risk.  As they grow and the space inside the amniotic sac becomes smaller, the risk becomes higher.  Some mothers are advised to stay in the hospital for continuous inpatient electronic fetal monitoring where they check the babies heart rate all day and night to ensure they are safe.  Babies are usually delivered before 34 weeks to reduce the risks of cord compression.  This is a rare type of twin pregnancy.  

And then you have mono/di or monochorionic diamniotic twins.  This is one “mono” placenta and two “di” amniotic sacs.  If we go back to the image of the babies in the cribs this would mean you have two babies in two separate cribs sharing one big bottle with two different straws.  When you picture it in your mind ,  you can see how things can go wrong. These babies have to learn to share very early on, but it’s not that simple. When the blood and nutrients are not evenly distributed it can develop into Twin toTwin Transfusion Syndrome, also know as TTTS. This is a serious illness of the placenta which can result in the death of one or both of twins. In TTTS abnormal blood vessels form in the shared placenta. The abnormal vessels send an overload of blood, fluid and nutrients from the donor twin to the recipient twin. The donor twin, giving away everything, becomes dehydrated and starts to loose blood flow to essential organs like the brain, liver and heart. The donor’s bladder can shut down and stop producing urine and stop he can growing. The recipient twin, or the one receiving everything, becomes overwhelmed. The baby’s organs such as the brain and heart are not able to handle the volume overload. The heart can fail and brain swell, a condition known as hydrops. Left untreated, TTTS often results in the loss of one or both twins.  Doctors, specially Dr. Ruben Quintero, have developed a surgery to help save these babies. Again, if found and treated quickly, your babies have a good chance of survival.  

Up to this point, I thought our twins were mono mono.  This appointment was to confirm, but on our last ultrasound they thought they saw only one sac and one placenta.   Today we will hopefully know the answer.  After some extensive research we found an MFM who practically locally and had an excellent reputation. I was anxious to meet him.

The doctor walked in the room with a strong presence. His resume was very impressive and he exuded so much confidence. We immediately feet comfortable with him. With my husband standing next me, he started the ultrasound. Here we are again, the cold jelly, the probe omy belly, both of us staring at the monitor trying to understand the black and white images. Quickly he points out two separate sacs. They are Mono di twins. He continues to scan and is very quiet while doing so. His face is tense. I just keep looking at my husband for reassurance.

After what felt like an eternity of silence he begins pointing again to the scan. Baby A and B he called them. Doctors label twins “A”and “B” to ensure they get the right treatment while you are pregnant and after they are born. On prenatal ultrasound the baby positioned the lowest in the uterus is given the designation of “ Baby A.” They name they get is based on their location.

He looks at me and then my husband and says, “It is highly unlikely that you will have two healthy babies from this pregnancy.” I don’t think heard much else after that. I remember crying. Crying from my soul. What does this mean? I never in a million years imagined having these babies and now, I can’t image my life without them in it. He explained his prediction in the simplest terms. It made too much sense. As he drew around the images with his finger on the screen, it was obvious that his statement was based on a number of disturbing facts. The umbilical cord was “hanging off “ Baby B’s sac and only had two vessels (compared to the normal three vessels). He also pointed out the large discrepancy in their size. Baby A was about 90% larger than Baby B. This is known as SIGUR or selective intrauterine growth restriction. The twins were not sharing the placenta, thier source of nutrients, evenly. It is a condition that can happen when there is only one placenta. SIUGR is diagnosed when one twin is below the 10th percentile for gestational age. My baby B was not even on the chart. Why is he not growing? The umbilical cord’s location was likely a cause. It was hanging off the side of the placenta. Almost like a straw that falling out of your drink. If you are sharing it and the other person has it perfectly placed in the middle you are not going to get an even half. The other thing, and most dangerous, that can cause SIUGR is TTTS. These terms were new to me and very scary. TTTS is a disease of the placenta where abnormal blood vessel’s grow forcing blood and nutrients from the donor to the recipient. Left untreated it’s usually deadly. No one knows the true cause of TTTS.

I’m still in the room with the doctor.  He is answering my questions and explaining as best he can but my mind is still circling around what he said earlier.   “When you come back for your next appointment it’s likely you will only have one baby or none.”  I can still hear him saying these words and feel the pain in my heart. 

He was not growing.  What do I do next , how can I fix this?  I’m a fixer.  I’ll do anything.  My mind was racing as my heart started breaking.  Please doctor tell me what to do.   “Nothing can be done we just have to wait.”  he said.  I am preparing you for your next visit, he continued.  They do not have TTTS right now. True TTTS is diagnosed on ultrasound when the deepest pocket of amniotic fluid in one twin’s sac measures greater than 8 centimeters and less than 2 centimeters in the other.  We clearly had an imbalance but it was not quite there.  Those numbers are ingrained in my mind.  Our prognosis was very poor. 

The excitement we had felt a week prior quickly shifted to fear.  Still new in the pregnancy family and friends were congratulating me and I didn’t know how to respond.  I was scared.  I had connected with my babies the minute I “saw two “ on the very first ultrasound.  I was going to fight for them with every piece of me.  

I recalled the story of my dear friend.  She gave birth to identical twins who had TTTS.  Her condition developed late in her pregnancy and her son passed away in her arms only minutes after he came into this world.  She shared her journey with me and educated me after she heard we too were expecting identical twins.  Her angel boy will alway have a place in my heart.  Her story is what made it impossible for me to do nothing and wait.  TTTS is dangerous.  You can have a normal scan and 24 hours later be in full blown TTTS with sick babies.  You cannot wait. 

The first thing I did was google.  Like everyone else I started my search.  I came upon the TTTS Foundation.  The TTTS foundation is dedicated to providing lifesaving educational, emotional and financial support to families and medical professionals before, during and after a diagnosis of Twin to Twin Transfusion Syndrome.  The founder of the foundation,  Mary, created it after a promise she made to her sons.  Matthew and Steven were born December 7, 1989.  They suffered from TTTS and she was told there was nothing she could do while she was pregnant to help them.  Steven did not survive.  “You will be known and remembered and I will find the answers.”  This is the vow she made to her sons.  Today, Steven’s legacy lives on forever as her foundation has fought TTTS for 31 years and is a trusted source for information and support.  I emailed and Mary offered her cell phone number.  It was more than just a website.  It was a mother.  A mother of

Identical twins who understood more than anyone how I needed to help my boys.  We spent over an hour on the phone.  She reviewed my history, and gave honest heartfelt support and advice based on years of experience with the disease.  Our conversation included Dr. Ruben Quintero.  He is a pioneer in the field of fetal medicine and helped to invent the surgery and tools needed to reverse TTTS.  She told me what questions to ask on my next visit and what signs and symptoms to look for.  

Our prognosis was grim and I wanted another opinion.  I went to a very well known hospital and saw a team of MFMs that have great reputations.  Those visits proved to be even more disturbing.  Around 14 weeks now.  The first recommendation was called fetal reduction.  Basically sacrifice the little baby, baby B, to save A.  They presented to me a situation where my little baby was not likely going to survive.  They explained the reasons , poor placement of the umbilical cord and SIUGR.  He was so tiny not measuring on any chart.  They said this.. if the little baby dies while you are pregnancy all the blood will rush out of the big one and go to the dead baby.  It is then likely you will lose them both.  The solution they presented was simple.  The preferred method of “fetal reduction” or terminating on twin in this type of pregnancy is immediate and complete occlusion of cord blood flow.  They would laser the cord and the little baby ( Baby B) would die without (hopefully) harming the big baby (Baby A) .  They spoke about as a matter of fact.  It was presented as my best option.  There was always do nothing and wait but not a lot of hope was given.  

I refused to do it.  I understood what was happening, I just felt it was too early in the pregnancy to justify something so horrific.  We came back the following weeks.   It just kept getting worse.  The doctors now diagnosed other diseases, malformed jaw, brain cysts and an abnormal heart.  All these diagnosis were made in simple ultrasound.  No one recommended more testing.  Instead the doctors recommended I meet with a neurologist so they can discuss how poor my babies quality of life would be because of this devastating brain cyst.  At this point I was almost 18 weeks.  The fluid levels were shifted and very close to TTTS but not quite there.  I had started to develop symptoms of shortness of breath and an uneven belly.  They diagnosed me with a genetic condition being expressed differently between the two twins.  It was no longer recommended to terminate one, but now both.  When I asked about the TTTS that was developing the doctor simply said as he walked

Out of the door, “we don’t operate on unhealthy babies.”  They had given up on my sons. 

I refused to terminate and prayed.  I prayed and I cried.  During all my searching I joined Facebook groups.  Mary’s group, the TTTS Foundation Facebook group is one of the reasons my sons are alive today.  I posted , desperately , doctors have given up and recommend RFA and termination of my twins.  Please can someone help me! A few minutes later a stranger private messaged me.  “I saw your message and I know a doctor that can help.”  She gave me his cell phone number.  His name is Dr. Ruben Quintero.  It was Palm Sunday 9pm.  I was alone.  My family went to celebrate and I couldn’t bring myself to go.  I needed to think.  I needed to pray for a miracle.  I called him and he quickly responded.  

His voice was soothing, and hopeful based on facts.  I cannot promise you the babies are ok but let’s find out.  When reviewing the details of the case I told him my baby b was diagnosed with  “reverse flow” in the umbilical cord.  Other than that the other dopplers were normal.  He was just very small.  He arranged for me to have a fetal MRI and fetal echocardiogram along with a thorough ultrasound exam.  My husband came home and I told him what had just happened.  I didn’t know what he was going to say.  We were given no hope.  Told our babies were very sick week after week.  But he believed in them, he believes in me. So we go to Maimi to see Dr. Quintero, he said.  We will make it work.  Leaving my 4 and 2 year old home would not be easy but we did not have any other choice.  Thank god for family.  My mom and dad moved in and my sister was my lifeline.  

At 17 weeks pregnant, we were on a flight from NY to Miami to see the doctor that pioneered the selective laser surgery for TTTS and the staging classification that is used world wide.  We are on our way to see the man who gave us some hope.  It is our last chance.  It was such an easy process.  Communicating

With him and his office was seamless.  He met me at the office.  I remember the photos on the walls.  Babies, their birth dates, how much they weighed, so many beautiful babies.  Could that be us one day?  He was kind, direct but so kind.  It’s a bedside manner that is beyond compare.  He truly cares and

You can feel instantly that your babies are special to him.  You are

Not just a chart or numbers on a screen.   It comes from the heart.  He started scanning and first pointed out all the dopplers were normal.  There was no reverse flow in baby B’s umbilical cord.  He showed how easy it is for this to be mistaken.  He tilted the probe ever so slightly in one direction and the reading was bad.  Then he would hold it correctly and the reading was good.  Proper technique when it comes to ultrasound is essential.  Usually scans are done by technicians and the doctor comes in to review them.  This helps save the doctors time.  At Dr Quintero’s office it was different.  He did the scan himself.  There was no middle man or anything left for

Interpretation.  Just his eyes.  I was relieved knowing the flow through the umbilical cord was normal but still feared the other dognosis they were given.  He had arranged for a fetal MRI and fetal echo.  A special test to check the brain and heart of the baby.  The last test planned for the day was a CVS or Chorionic villus sampling.  A sample of tissue is taken from the placenta to test for chromosomal abnormalities and certain other genetic problems.  It’s hard to believe the other doctors made judgements based only on very early ultrasound without any of these detailed tests.  The say was so busy there was not

Much time to think.  It made it easier to just go from one appointment to the next all prescheduled and arranged by the fetal Institue.  All I had

To do was show up and they already had

All my information and were eager to help.  It was the day before my birthday.  I only had one wish.  The next day we reviewed everything in Dr Quintero’s office.  Face to face, he explained every issue and then offered soltuitons  and management options for them.  My sons were healthy.  The cardiologist gave them a perfect report.  The abnormal heart was simply one that slightly tilted but still within normal limites.  The malformed jaw did not exist on MRI.  The brain cyst was there, this was the hardest part.  My baby B, my little

Baby did have a small brain cyst, but on MRI, they were able to see something called the vermis.  This meant that the cyst was not a devastating neurological condition but rather something benign that would

Go away on its own, Likly before he is even born.  Then there was the issue of

Him being small.  Yes I did have a small baby.  But that was all it was.  His doopler scans or ultrasounds that check blood flow going to vital organs such as the brain or the umbilical cord were normal! Dr Quintero also explained they did not have TTTS but he did want to monitor them again in a few weeks.  

It was the greatest birthday wish come true.  Instead of coming home with devestating news we were celebrating. 

Two weeks later we went

Back and still not TTTS.  The largest fluid pocket was close by not exactly there.  Dr Quintero connected us with an incredible local MFM group so we could return home and be monitored

Closely.  He was always available, by email or cell phone and made feel my sons were the most important babies in the world.  I knew, no matter what happened, I was in the best hands and I could finally trust my doctor.  

I insisted on being monitored weekly.  I would go and get my scan starting at the monitor praying.  I felt sick.  My belly was visually lopsided.  It was hard to lie down , almost impossible to sleep.  I know my body and I know something was not

Right.  The first week of June, I started to feel contractions. Real deal contractions.  This was my third pregnancy.  I had a scan only a few days prior and it was normal.  But somethjng was wrong.  I had to go to the hospital.  We went to the emergency room.  A young doctor came in.  She hooked me up to all the wires and machines.  It’s false

Labor, you’re dehydrate she told me.  You could see the rise and fall of each contraction on the monitor and I could feel them.  Go home come back in the morning.  I refused and wanted to see the MFM.  The next morning the came to see me.  I was in labor and at this point I was in stage III TTTS.  Twin to twin transfusion syndrome is classified by Quintero Stahes.  Stage one is when the largest pockets of amniotic

Fluid are 8 cm in one sac and and 2 cm in the other and you can still the bladder of

The donor twin.  In stage two there is no visible bladder.  In stage three either twin is critically ill with abnormal Doppler studies.  Stage four is fetal hydrops or brain swelling and stage five is the death of one or both twins.  I went from a normal heathy scan to stage three in 48 hours.  I was also past the deadline to perform surgery.  It is recommend only before 26 weeks and we were now just a little past the time frame.  

My local doctors presented the case.  We had two choices deliver the twins right now or try and stop the contractions and fly back to Miami.  Dr Quintero agreed to perform fetal surgery if I choose the later.  Delivering the twins at 26 weeks was risky.  Not only were they small and faced all the risks premature infants have at that gestation, but they also had damage due to twin to twin transfusion syndrome.  My baby A’s heart had been working very hard to pump all that excess volume and the concern is that the extra fluid not only causes heart failure but can also swell the brain.  My baby B no longer had his bladder visualized on the ultrasound.  He had no fluid left in his amniotic sac that is made up mostly of the babies urine.  This meant that he was no longer perfusing his vital organs.  His bladder was not getting enough blood to work

Properly and produce urine.  If the bladder is not getting the blood it needs other organs are likly suffering as well.  This decision was one of the hardest we had to make.  I was scared.  Scared to leave my other two children again, scared I would lose my twins.  My husband held my hand and helped give me strength.  They pumped me up drugs to stop my contractions and back on the plane we went.  The surgery happened almost immediately after we landed.  My doctor, Dr Quintero , was waiting for me , was waiting for my boys.  Everything we had done led us to him for this moment.  I’m awake, lying in the operating room in the hospital.  The goal of the surgery is to separate the abnormal connecting blood vessels in the placenta .   A small incision is made in the skin and a fetoscope is inserted into the uterus under continuous ultrasound guidance. Once in the uterus, a laser fiber is inserted into the fetoscope and the placental vessels that cause TTTS are coagulated under direct vision.  “Lisa”, I hear Dr Quintero say while I’m lying on the table , “I cannot perform

The routine surgery.” If I do both twins will no take it.” He explained the abnormal blood vessels connecting them were a large that he was to separate them, they both would not be able to live.  “Instead, I’m going to perform a Supra- selective procedure where I balance the blood flow instead of completely separating it.”  My faith is with my doctor at this point.  No matter what the outcome I know I fought as hard as I could to keep them alive.  As he traces the blood vessels i the placenta from one twin to another,  I pray harder than I have ever prayed.  The surgery was over quickly and was fairly painless.  The first scan post surgery is when you find out if it was successful.  We still have heart beats! Their beating heart was the most beautiful sound.  Next we look for the bladder.  Almost instantly we can see it come back.  The next few days Dr Quintero himself came to check n the boys and finally gave us the ok to come back home.  I missed

My girls and was so grateful to still have my sons.  

27 weeks and one day . a milestone for us.. we no longer have a real due date.. just thank god for every day our babies are able to stay safe inside and grow .. ultrasounds are daily and we are monitored 24 hrs a day to make sure our babies have a heart beat .. the one sound that gives me peace💙💙

 I am one of the lucky ones who found this devastating disease before it was too late.  I am forever grateful to my angel doctors,  Dr. Ruben Quintero and Dr.  Kontopoulos  from the Maternal Fetal Institute in Miami, Dr Jesus Alverez Perez and Dr Al-Khan at Hackensack NJ, Dr. Julian De Lia , who although retired , reviewed my case and spent hours coaching me over the phone , my dear friend  Yvonne who has both a TTTS survivor and angel , Mary Salman the founder of the TTTS foundation and other twin moms who I “met” through Facebook support groups. 

I was elated to report our boys were doing well

I believe in the miracles and angels .. I know we have many. .. after 7 different mfm, 3 different pediatric cardiologists, 2 brain mris and a week stay in the intensive care unit.. I was able to say,  I am carrying healthy babies.   I could never thank my family enough .. especially my angel mother who taught me to how to be a mom .. from the very first heart beat.. and my husband my true rock.. who supported my every decision and has not left my side you are my everything and I pray our boys are as strong as you are  and they continue to be as strong as the men they are named after .. Peter & Maurice 

This takes me to our birth story and the beginning of my journal. My heart on paper … 

I wrote each day as it was happening , 

28 weeks and 5 days

We had a great report after the surgery on Friday. There was no evidence of ttts. This morning, only 4 days later, my sons were back to stage 3 ttts. Baby b had no bladder and changed heart Doppler’s as well as no fluid. Once again he was stuck. Baby A had increased fluid at 8. They had to be delivered with an emergency c section. We have spent 28 weeks and 5 days doing everything we could to help save our boys. Today, I had to accept that there was thing more I could do.. no magic surgery or fetal expert.. they will have a better chance of survival if delivered. We were able to get over the 28 week mark which is critical in their development . They have a long road ahead but they are strong fighters just like the men they are named after.. they each cried when they came out which is a very good sign. I’m proud to say I’m the mother of 2 amazing little boys. Peter and Maurice and I cannot wait to hold you in my arms. My heart beat to yours .. Today I was able to hold Peter hand and having those tiny fingers wrapped around mine was a feeling I will never forget. Please continue sending your thoughts and prayers and know they are so appreciated.

June 20, 2018

During the c section there were 2 teams from the nicu working on Maurice and Peter. It sounded as though there were 20 people in the room. They treated my babies as I sat behind a big blue curtain. I was not able to hold them or see them.. my husband went over a took pictures so I could catch a glimpse on his phone. The one big sign of relief was their cry. They both let out a tiny cat like cry when they came out. Peter first and then a few minutes later, Maurice. That cry was the sweetest sound I have ever heard. The Nicu doctor popped her head behind the curtain to tell me they were doing ok but there was a risk they might need to be on a ventilator.

I was scared .. I could feel tons of pressure during the section but no real pain.. I just kept trying to listen to anything they were saying so I could get some idea of how my boys were doing. My husband was beside me, holding my hand, telling me how beautiful our boys are and reassuring me everything was ok.

About an hour later, I was able to go to the NICU and meet my sons for the first time. They first wheeled my bed into Maurice’s room. Maurice is our “donor” twin. He is under closer watch because his heart function is mild- moderately decreased. We are not sure yet if it is an area where he had a mild heart attack or if it is just from the strain of being shrink wrapped inside his membrane. He is on a medicine to make it stronger. The wonderful news is that although the function is decreased he is able to maintain his oxygen at a level of room air. His nurse Maggie reassured me early this morning that she did not have to increase his oxygen and he is doing very well. She told me he was fiesty. 🙂

Our son Peter , “the recipient” suffered from volume overload due to the high fluid levels from ttts and has a hole in the heart that may close on its own. He also has a thickened heart muscle from it having to working so hard. Again the doctors are very optimistic and believe this should resolve on its own. He too has “some pair of lungs” and he is also on 21% oxygen which is the same that we breathe. They both have high bilirubin and are under lamps but this is very common with preemies.

The plan overall right now is to Mimic the womb as close as possible. Keeping the room dark, baby warm and voices low are essential . They also do not want to use too much stimulation and they touch them as infrequently as possible. I’m hopeful that in a few days I will be able to do skin to skin and feel them close to me.

This experience is very new to me. My first and second daughters had skin to skin immediately . They stayed in my room and slept with me from day one. When I went to visit Peter and Maurice, all I wanted to do was grab them.. hold them tight .. to look at them through a plastic box and barely be able to touch them goes against every motherly instinct you have. I was able to hold Peters hand for a minute and it was so beautiful. My first night without them.. knowing they were in the nicu .. not feeling their kicks inside me or hearing their heart beats on the monitor was one of the hardest nights I have ever had. When I called the nurses to get an update and heard they did well and were able to lower their oxygen it was a dream come true.

I know we will have a very long road here .. they have fought through so much already.

It’s only been hours .. but already my sons have changed me. I am stronger because of them. I am truly blessed and grateful to have been chosen to be their mother.
Our first pictures

During the delivery I could not see the boys.  These were the first pictures James took of them to show me while I was getting stitched back up.  The very first images I saw of Peter and Maurice.  Seeing these and hearing them cry felt like a miracle. 

Our first touch 

After we delivered I didn’t get to touch my boys.. I didn’t even get to see their faces… they were brought straight to the NICU .. eye masks were put on to shield their sensitive eyes from the lights and small tubes placed in each nostril to help support breathing. When they took me to see them, they were wrapped in blankets .. tubes in their belly buttons (IV) , and with all the masks and tubes on their faces I could only see tiny lips with another tube coming out of their mouth. I didn’t know what they looked like.. i didn’t feel their skin.. but I felt lucky to have at least hear them cry.

I went to bed last night feeling lost. I missed having them inside me.. missed feeling them kick .. they felt so far away .. on a different floor inside a plastic box.. it was a hard night. I missed my girls and my boys.

I needed something to help me feel connected to them. I needed to help them in some way. This morning the Lactation coach came in my room very early. She helped me pump and explained how colostrum is “medicine” for the babies. I was never able to produce a lot, but they only needed a few drops which I was able to do. We went down stairs to see them and I was able to give it to them. It was the first time In a long time that I felt my body doing what it was supposed to do for my babies. I was able to give them something to help them grow and make them strong and healthy. I have been desperate to help them and my body couldn’t do it. Giving them this “medicine” from my body was therapeutic for me as much as it was for them💙. I was also able to “hold ” Maurice by placing my hands on his head and feet.. he is so tiny and his skin so soft.. he was crying and when I touched him and sang to him he stopped. It was the first time I felt his skin. Tears rolled down my cheek .. I was able to soothe him.. my baby boy knew the sound of my voice.. I told him how much I love him over and over. I was able to provide him essential nutrients , my antibodies, and calm him with my touch. It was very special and our first moment to bond. I couldn’t help but keep thinking about how many times I almost lost him.. and now he is here.. my little baby.. my baby b .. baby Maurice is so incredibly strong.

He has been struggling with his kidney function. He stopped producing urine in utero due to tttts. As the “donor” he was unable to profuse his organs and his kidneys stopped working before he was born. The doctors say this is common in babies born with this syndrome but they cannot predict if he will get better. By the end of the day they had to place a catheter to get exact readings of his output and they were able to report some good news! He seemed to be producing urine and although a very very small amount he is not in kidney failure. He is being treated with Dopamine to help the profusion to his organs and we are monitoring his kidney function closely. We are also closely monitoring his heart function as well.. it’s mild to moderately decreased likely due to the stress he had. The nurses are on top of everything and I feel very confident in his care.

Baby Peter gave us a scare today as well. His feet were “dusky.” They took out the catheter in his umbilical artery and it appeared that they improved. The nurse told us it could have been an arterial spasm but they did Doppler’s of legs and repeated his heart echo to be sure. So far we have not heard any other concerning news and because things seem to have gotten better they are not very concerned. Peters nurse let me help in changing his teeny tiny diaper and again just being able to touch him and clean him was such a beautiful bonding moment.

This journey, although only a day long, has felt like an eternity. Being able to comfort them.. even if only with a soft touch through a tiny hole, has made me feel so much love. I am focusing on the positive. Their lungs are so so strong and they have been able to maintain their vital signs. The nurses call them feisty and say that they are always looking for attention. They are fighters. I am so proud to be their mother.
Birth certificate complete

It’s official ! Our boys are named after the strongest men we know 💙

I’m honored to carry on the legacy of my father in law , who is now an angel watching over us!! Peter James, mommy and daddy will teach you all about your papou and you will always know what a special man he was. He will be your guardian angel forever watching over you!

And my Maurice Jace. My strong fighter … you are named after your papa .. my daddy and my forever hero. He came to almost every dr visit.. watched you grow and even learned how to read your sonograms. He is our biggest supporter. Papa is our superhero .. there for us every single day and you are blessed to be named after such an incredible man!

My boys have already proven to have so many of the qualities of the men they are named after. The nurses have already labeled you both as the feisty ones .. you always let them know you are there and when you want something. I love hearing all of their stories when we are in the NICU. I love seeing your names written. Papa is so proud of you both and I know papou has been watching over us !
I am strong 

Today I am focusing on how strong my body has been for my babies.  I struggled  with “forgiving “ myself for not being able to keep my boys safe inside me.   I am shifting my focus and creating space for love and healing for my boys as well as for myself.

I am strong because I have had healthy pregnancies and beautiful child birth experiencies in the past.  I carried my girls to term and lived every joy that a new mother should.

I am strong because I never gave up.  I worked so hard at finding the right care.  My efforts lead us to Dr Rubin Quintero in a Miami and Dr Al Khan and Dr Alverez Perez in Hackensack.  They treated me with incomparable skill but also treated me like family.  I had cell phone numbers and was encouraged to call anytime.  I always believed they would be here and be healthy.  I chose to undergo a life saving surgery for my twin boys.  After the surgery my lungs filled with fluid and I couldn’t breathe. I am strong because after 10 days in the hospital and ICU I was able to heal and travel back home.

I am strong because I listened to my body and came for a follow up quickly.  I knew something was wrong.  In only 4 days our boys were again suffering from ttts and if we delayed there is a good chance they would not have made it.   We went from having a regular follow up visit and ended up having an emergency c section only a few hours later.  I accepted that there was nothing more I could do.  I am strong because I was not able to see or touch my boys after delivery. It was hours before I was able to see their tiny pink perfect bodies through the small windows of their incubators attaches to many wires,  monitors, tubes and machines.  I am strong because I stay with them in the NICU as much as I can .. although watching them and not being able to hold them or even comfort them at times is heart breaking and against every natural instinct you have as a mother.  I am strong because The only thing I can do is pump colostrum and wait for my milk to come in and I am working so hard at making sure my boys have whatever they need.  I am strong because I know the next part of this journey will not be easy.  I have already watched my babies feet turn blue and hear from doctors worst case senerios.  I am strong because I have to leave my most precious gifts with strangers and Trust that they will be taken care of.

I am strong because I will never give up.  I will continue to fight as hard as they do.  I am strong because I continue to believe in miracles and the power of prayer and angels.  I am strong because they are my sons and for them I can do anything!

Healing from TTTS no longer fighting it 

They are no longer fighting TTTS, they are healing from it.”

After 48 hours of close monitoring, 3-4 blood tests a day, Heart ultrasounds, chest X-rays, kidney and renal artery ultrasounds , brain ultrasounds and machines monitoring every breath and heart beat we are able to get a big picture on what the main issues are with Peter and Maurice.

The parents are allowed to attend rounds which happen twice a day.  The NICU team meets and reviews every detail and sets a plan for the day.  The team is beyond compare. The nurses are not only incredibly skilled but they also have made every effort to make me feel these boys belong to me.  They enourage questions  and teach me how to touch .  I’m blessed to have such care.  At night , they follow up on all the results and tests from the morning.  Going over this with the doctors allows me to ask questions and have some peace knowing their  status.

Basically, although premature, the main issues they face are not due to prematurity. The issues are secondary to the damage from twin to twin transfusion syndrome.

My “ donor” twin Maurice was giving everything to his brother Peter.  All the nutrients blood and fluid went to his twin.  He has struggled with growth from day 1.  This caused a tremendous amount of stress on his heart and even some damage.  He had high troponin levels at birth which are a sign of injury to heart muscle.  His heart function on his first echo showed a mild to moderate decrease.  Because he had so much stress on his body and his heart cold not function correctly, his kidneys could not get the blood flow they needed to function properly.  In utero he was unable to produce urine and once outside the problem continued.  The first day he made no urine. The body is very smart. It pushes blood to where you need it most. His weak heart sent the majority of his blood to his brain and lungs,  the organs that are most critical.  The secondary organs like the kidney and liver suffered from decreased perfusion.  He was started on Dobutamine and Dopamine to help his cardiac and renal perfusion .  48 hours later his repeat echo showed improved cardiac function and he is making urine on his own! His medication is stopped and he is now only on caffeine which is used in all preemies becuase they sometimes “get tired and forget to breathe”.  His kidney function and cardiac function is still  not perfect but we are trending in the right direction.  We are also having some issues balancing electrolytes but the team feels this too will resolve with close monitoring and adjusting .  His sodium is the main issue because if it drops too low he is at risk for a seizure.  It seems to have gotten a little better from this morning and they are watching very closely.  He is also jaundice from too much bilirubin but this as well is a common issue in preemies and with phototherapy should improve.

Peter is our “recipient” twin.  He was receiving too much blood and fluid and suffered from volume overload.  The heart is a muscle and the increased volume made the heart have to work much harder than normal.  Like any muscle , when it works hard it starts to grow or thicken.  He now has left ventricular hypertrophy or an “enlarged heart.”  The enlargement is causing an outflow obstruction and making it difficult for the blood to perfuse other organs.  Again, like in Maurice, the body is smart and pushes blood to the heart, lungs and brain first.  Just like his twin, the first organ to show signs of decreased blood flow is the kidneys.  His kidney function is decreased however it seems to be improving.  He also is having some issues with electrolyte embalances but tonight his sodium issue resolved and this is a big step.  He does have jaundice too and is under lights to help his body break down the bilirubin.

The good news is that they both no longer are fighting against ttts.  Peter’s heart no longer has to pump this tremendous overload of fluid and Maurice is no longer forced to have such a strain on his.  They are in an environment where they are getting the support their little bodies need to heal and repair. The heart is already showing some signs of improvement and although the kidneys are usually the first to show signs of damage.. they are the quickest to heal!

Today we we had some victories… Maurice is off of Dopamine and Dobutamine and is making urine with an improved heart function and for Peter his sodium normalized and his feet and body are nice and pink with no signs of perfusion defects.  ( it was very scary to watch them turn blue.) I am even a little stronger today and walked back from the NICU instead of sitting in the wheelchair.

Everyday we will have ups and downs .. today I’m so thankful for the ups 👍🏻 I was able to blow them kisses and touch their tiny hands before I left them to come back to my room to go to bed.. my heart aches for them already .. dream sweet dreams my boys 💙 mommy loves you and is so proud of you 💙

Our first look and bah time

Maurice Jace💙
Today I really met you for the first time.. I looked into your eyes and told you I was your mommy .. by the way you calmed I could tell you recognized my voice. I saw you without any tubes in your nose or around your mouth for about a minute.. I cleaned your face with a tiny piece of wet gauze , gave you fresh new sheets, held you and helped weigh you 1lb 12 Oz and changed your diaper . For a few magical minutes, I forgot about all the numbers .. all the tests .. the machines .. the ups and downs … even the plastic box you were laying in … and I was able to just be your mama… you are my baby boy and through this journey I have learned what a gift the smallest things can be.. to never take a single breathe for granted. I love you even more today than yesterday .. my miracle .. my heart .. my baby Maurice xoxo I’m counting the seconds until we can be together again and tomorrow I am able to hold your brother!! Thank you to all the nurses especially Maggie Maurice’s nurse who always makes my babies belong to me and not the NICU. It sounds so strange to even say it but you are the visitor … however they have been so incredible at Hackensack and the nurses here are very encouraging and helping make this traumatic experience as easy as it could be.
We have reached another milestone .. 72 hours. The NICU fellow as well as the nurses have informed us that the first 24 hours is critical. That is then follow by the first 72 hrs and then the first week! Yesterday at 3:00 we celebrated their 3 day birthday!! For the first 3 days of life the are on strict precautions to minimize contact touching sound etc. They have been taken from inside you too early and the goal is to mimic the womb as closely as possible. Too much stimulation could result in a brain bleed and we must be very cautious.
As of today, Maurice and Peter remain off of all medication , except TPN and saline. I am so proud of them for this!!
Maurice has been officially diagnosed with intrinsic renal disease seen on Doppler secondary to TTTS. As of the last day he has been producing urine on his own without any medication. His electrolytes are better balanced however his creatine ( kidney function measurement) remains elevated. During rounds the NICU team remains confident that his “creatine has peaked” and should start to get better. Also as he grows, there is a good chance his kidney disease will improve. His bilirubin improved today and he was able to come off of one lamp that was used for phototherapy. His cardiac status remains improved but still decreased. He had a mild- moderate decrease in function on his first echo and the repeat yesterday showed “improvement.” He will repeat his heart echocardiogram on Monday.
Peter has similar issues. His kidneys are suffering from acute renal failure but he continues to make good urine output following in the trend of healing. The doctors also expect this to improve. A good sign of healing kidneys is electrolyte balance and Peter has done so well balancing his over this past 24 hours. One of the nurses mentioned to me, that because the boys blood supply was so connected, if one suffered kidney injury or disease, the other would like have the same neural hormonal response. The kidneys are responsible for regulating renin- Angiotensin- Aldosterone, Antidiuretic hormone and much more. They are essential for controlling fluid output and assist with maintaining electrolyte balance. This was so interesting to me.. it’s impossible to prove , but in theory , when Maurice stopped making urine in utero and suffered kidney damage it caused a response in Peter’s body as well. His cardiac status remains the same and will be rechecked Monday along with his brothers. He has a thickened heart muscle due to it having to work so hard. He suffers from a functional cardiac outflow obstruction and when he is under stress or has a high heart rate he cannot perfuse his body correctly. Basically his heart, being thick, blocks the blood flow at times. Now that he heart doesn’t have to work as hard this too should improve. He also has a murmur or “hole in the heart” that should resolve as well. His level of bilirubin is high and although common in preemies has not improved much with phototherapy. Yesterday additional light therapy was added.
The most incredible thing is that they have almost no lung issues at this time. That is the most common issue with premature babies. They do not need surfactant and the cpap is set to room air 21% only. They do not have the issues of typical preemies. Their problems are not from being born early.. they are from twin to twin transfusion syndorme. On top of that we have to be cautious of all preemie issues but this terrible disease has caused damage to their heart and kidneys.
And , on this beautiful positive day, … my biggest supporters , my mom , my cousin and my Juliet stayed with me all day!! Today life is good .. And for that I am grateful💙💙

Learning how my sons communicate with me in the NICU

When to cuddle and when to stop 💙💙
16 Procedures: Neonates may experience as Many as 16 painful procedures a day
54-117DB: NICU sound levels may range from 54-117 db . The sound of a jet plane taking off is 124db.
40-60% : A neonates skin is approximately 40 to 60% thinner than an adults.
14 days: A neonates exposure to stressors is highest in the 14 days after birth
I woke up this morning anxious to get my hands on Peter as quickly as possible. All I could think about was holding him on my chest and feeling skin to skin .. to smell him and have him close again like he was for so long. We went to the NICU and I started taking to his incredible nurse. She has been in the NICU for 35 years and was sharing with me everything I could do while he was here to ensure he remains as stress free and safe as possible. She explained to me babies show signs of stress and, at this fragile state, any stressor can result in a serious event such as dangerous heart rates ( with Peter this is of extra concern because of his enlarged heart) or even worse , brain bleeds.
When I walked in to see him, he had hiccups. He was moving his arms and it looked so cute, like he knew I was there and was waving to me. After speaking to the nurse and reading what she suggested .. these are all signs of stress and it is best to limit contact. He has blood taken 3-4 x a day , and tubes coming out of his belly button, mouth, nose and a few other places. Extra stimuli, at this point, didn’t seem right to do. She suggested I hold his hands and put light pressure on the top of his head. She also told me to avoid his feet becuase that is where they take blood and he is likely to associate any touch there with pain. I stood like this .. watching his every breath as his little body would rise and fall for as long as she suggested and then we let him rest. I still felt such a connection to him.. even more now after learning some of his language and respecting where he is at this moment.
It’s hard to believe only four days ago my babies were inside me. The womb is a warm, dark and cozy home where my boys spent their days and nights curled up with arms and legs tucked in and flexed. Sounds of my heart beat were rhythmic and soothing while the outside world sounds are muffled and muted. This environment is ideal and so critical for their growing and developing brain.
At 28 weeks and 5 days my boy’s world was interrupted. Months earlier than expected, Peter and Maurice are now in a chaotic new home polluted with loud noises, painful procedures, beeping machines, bright lights and stressful handling. It’s very difficult for their immature brain and underdeveloped neurological system to process all these bombarding sensory messages. The NICU takes so many precautions to reduce the effects of this negative stimuli , however it’s impossible to eliminate all the stressors. It is my job to help protect my boys and learn to minimize the effects of this new world. By keeping their environment as peaceful as possible , I can help them grow and thrive.
Right now the only way my babies can communicate with me is through their behavior. Our nurse worked with me, teaching me based on her experience and her time with Peter , some of his likes and dislikes and basic preemie behavioral cues. Using these signs, I can learn what my baby is trying to tell me so I can give him the best start possible.
I’m focusing today to learn the signs and to listen to my boys as much as I can. Understanding their behavior and personality is just as important to me as understanding their blood work. The nurse also suggested I participate in cluster care and perform necessary procedures with the medical team. For example , be a part of bath time or hold his hands during an ultrasound.
I still yearn to have my boys close to me and I understand eventually this will not only happen but will be beneficial for them. For now, I will learn more about them and let them tell me when they are ready. In the past few days, I have been working on patience. NICU life is all about being patient and giving up control. I had tons of questions .. when can we stop this.. when do you think they will come home.. the nurse answered them all with “your babies will tell us.” I will continue to listen to my boys and learn their sweet language as I discover more about them each day. Thank you God for making me their mommy.

Brothers and sisters meeting for the first time

Mia and Juliet were with us when we found out we were having twins. She sat on my lap as the ultrasound tech went back and forth between heart beats and I screamed “ I see two!” She was so excited and kept telling everyone she was “having two babies.” Juliet would rub and kiss my belly. She would put her head down on it and look up at me with a big smile. I couldn’t get enough of hearing her say baby Peter and Maurice followed by “awe baby!”
I wanted the girls to be on this journey with us. To always know that these are their babies too. Mia helped get the nursery ready and understood the babies would be with us soon. She would kiss them goodnight and good morning everyday. It all felt like a beautiful dream. They would always have each other.
Things changed quickly. When the boys became sick I worried about the girls too. I didn’t want them to know how scared I was. We had to travel back and forth to Florida to see Dr. Quintero. My parents moved in to keep them in their own home and to make sure they could keep their routine. My mother would get Mia ready for school or camp and my father would drive her and pick her up. Juliet would hang out with nana or Leo and auntie all day and have so much fun. They took Mia and Juliet to birthday parties and play dates and somehow my mother also managed to keep up with my house work, my laundry and everything else. Auntie would take Mia too and she had her best friends Mickey and Nicky with her almost everyday.
To say I am blessed is an understatement. They always told me take care of you and the babies and we will make sure the girls are ok. I know they missed me but they were having so much fun and it didn’t upset their life. This was so important to me. My heart was split in quarters worrying about my girls and my boys.
Today everything came back together and my beautiful dream came true. We knew we were coming home and the babies have been improving everyday. My parents took Mia and Juliet to see us and then we planned on taking them to meet their brothers for the very first time. The minimum age to go into the NICU is 4. There is a family waiting room where we kept Juliet but I wanted her there in any way she could be so she felt included. Peter’s beautiful nurse made them packages of the teeniest diapers, mini blood pressure cuffs and baby bottles. She gave it to them before they came in and told them they were ofically big sisters and part of the NICU team. They were so excited.
I can’t explain the feeling of having all my children together. Even just having them in the same building made my heart feel so full. I didn’t know what to expect. I didn’t know how Mia would react to all the machines and tubes. I knew if she saw her brothers with James and I.. and we told her how much they love her and how excited they are to meet her it would be ok. She washed her hands and let the nurse at the front check her temperature. She walked down the hall holding her daddy’s hand smiling and I followed with my phone taping. What happened next was magical. A moment I will hold in my heart forever .. where time seemed to stand still… and everything was right and made sense.
Today is another day where the boys are improving. The numbers are moving slowly but clinically they have significantly improved. They are brave and strong and so are my girls. Their life was disrupted.. mommy and daddy away for weeks at a time and watching me on bed rest not able to do much with them. You would never know. My beautiful girls are happy , my boys improving and mommy and daddy get to go home and start our life as a family of 6.

Two steps forward and one step back

I’m home … without my babies. Part of my heart is living in the NICU. I want to go back and listen to the monitors, watch the screen for every breath making sure the caffeine they are on is working and they don’t “forget to breathe.” I want to feel their tiny fingers wrapped around my hand. But then I look at my girls, how I have missed them.. for the past 28 weeks I focused on the pregnancy with doctors appointments that would take hours just in commuting and pain that would keep me from play. They need me and I need them. They will remember and part of being strong is being able to be away from the boys too. Im trying…… after a mini breakdown in the car on the way there I texted James.. why us.. why do I have to visit my babies in a plastic box .. so many why’s.. his response reminded me of how lucky I am to be his wife.. he said “I can’t answer that.. but I can tell you that everyone , including our boys and girls will be stronger for it..we will appreciate the little things more than others and celebrate even the smallest of victories. Our girls will be great and our boys will be too.” And somehow that just made sense.
I went back to see them. After almost 24 hrs away miles apart I needed to be there with every piece of my being. It is cardiac echo day and the boys were getting their hearts rechecked. Being in cardiology and understanding more than I should, I was anxious to say the least. I walked in to the wonderful nurses telling me they had a great night. I peaked in quickly to look at them.. and the looked so good. Their jaundice is improving so they both have better color ..their vitals are stable.. ask the nurses if they had any “episodes” which is basically when they just stop breathing and they didn’t and had good oxygen all night. I already feel better.
The doctors come and we start rounds. Who has baby a .. who has baby b.. I want to jump up and say me.. but right now its the nurses that have them. Thankfully they are amazing women and I know my babies are well taken care of. They start going down the list .. Maurice 6 days old, I hold my breathe .., is improving! A mini party goes off inside me. He Has intrisic kidney disease from TTTS but he is now urinating on his own and his crt or kidney function blood work is getting better. The first few days we watched it get worse from 2.4 to 2.5 then 2.6 .. today down to 2.0!! It’s not o.6 or ideal but improving. He continues to have a Cpap machine but he does not have any additional oxygen other than 21% which is room air same as we breathe. Cardiac wise he had a weak heart. The pump was moderately decreased on his first echo. Today his heart function is normal. The improvement he has made in 6 days is a miracle. He is still a little jaundice but that’s better too. Still closely monitoring electrolytes with small “tweaks.” We are waiting for him to do number 2 again it’s been a few days so a little glycerine suppository. He had low platelets and we were preparing for a blood transfusion but now they are normal . He does have a ventricular septal defect or vsd in his heart (hole) which is larger than the cardiologist first thought. He said if Maurice doesn’t start growing he will need open heart surgery to repair it. It can also get better .. we just don’t know . I’m focusing on the improvement and trying not to concentrate on the ” what if.” The 2 step forward and one back.. slowly we will get there.
We went to start Peter but right before we could someone came out of a nearby room of another baby and said “he’s coding. “. They all rushed into this poor babies room calm but in full action mode. A minute later everything was ok. They had to intubated him but he was stable. It scared me to my core. To think this happened to this baby and his mother was not there.. or in an instant how quickly things can change. It reminded me of where I was.
They were ready to restart Peter’s assessment. I ran in quick just to look at my boys. Just one look and hear their heart beat .. deep breath.. ok I’m ready. Peter 6 days old and improving. Again the happy party .. it’s a mini one but a good one. His jaundice improved and bilirubin normal so he no longer needs to be under bright lights. His eye mask comes off .. to see his face.. he’s so beautiful. His kidney function was poor and he was in acute renal failure a few days ago .. now it 0.2 points away from being normal. He is doing so well on his feedings and we are increasing them ( I was able to feed him today by holding up a mini syringe connected to a tube in his mouth which goes to his stomach.) He has not had any episodes and heart seems stable. They canceled his echo for today and changed to next week because he is doing well. He also has a little scratch in his nose from the tubes. They changed him to a mask and he’s doing ok. We know his heart is enlarged and he has an open pfo but he seems to be ok for now. I’m so proud of them.
Our biggest win for today was no picc line. It is a peripherally inserted central catheter that can be used for an extended period of time. Given the progress they have made , the doctor does not think it’s necessary. It can be a source of infection and any procedure at this age gives stress and puts them a risk for bleeds or a stroke. For this one the mini party was a little bigger!
These boys amaze me. Tomorrow we have head scans scheduled to assure no brain bleeds have occurred. I’m nervous but the worry does not help anything. I’m focusing on our progress and on the way they looked. The fact that tomorrow is one week , another big milestone and we made it!! We have come so far ., yet still have so far to go 💙💙

Happy birthday my boys

One week in the world my beautiful baby boys.. 7 full days .. and here you are thriving and growing stronger than mommy could have ever imagined. I’m so proud of you both .. so proud of us .. we never gave up and always believed that you would be here. You never stopped fighting. I knew in my heart you were meant to be mine and seeing you makes it so real.
In the beginning, I was in full “doctor” mode. I had to understand every number, every lab, the settings on each machine, the nicu lingo.. Maurice’s kidneys weren’t working and he had moderate dysfunction of his heart muscle. After a few days of not making urine the doctors gave medicine but at barely a pound no one could reassure me that he would be ok. A lot of wait and see .. and in just a few days that all changed. Today kidney function is 1.9 ( down from 2.6) and continues to go in the right direction. His echo yesterday confirmed his heart muscle has healed itself and is now normal. He does have a vsd but doctors are hopeful it will close. Our biggest goal today is to go up on his feedings and hope he can tolerate it . He did poop 2x yesterday which was a big victory.
Peter is doing the same. He had acute renal failure and thickened heart muscle. His recovery also wasn’t promising. He quickly fought off his kidney disease and tomorrow we re evaluate his heart with an echo. He is having a harder time tolerating higher feedings and the doctor mentioned he may need a picc line if he continues to spit up .. ehh. Yesterday I prayed for poop and today for no spit up . In 7 days you have both fought off renal failure and heart disease caused by TTTS. You have come so far.
In 7 days I have become familiar with the NICU and the staff. I smile and love seeing them in the morning. I know each nurse by name and they know my baby. They know their personality. I’m so grateful for them. I don’t look at the monitors anymore ( or at least not as much) or obsess over every detail in their blood work. I walk in now and all I see is you … you both have all your jaundice lights off and I can see your eyes. You are changing so much already. I am able to reach in and hold your hand and change your diaper without a tremendous amount of fear. Fear that I would hurt you or fear that I would wake up and you won’t be here. Things have been improving and I am no longer so numb. I was in shock working so hard not to miss anything. I had to be my own advocate throughout this entire pregnancy to protect you both and I wouldn’t let the control go. Nothing seemed real , it was more of a dream.
On your 7 day birthday you gave me a gift. The gift of seeing you both as my boys .. my babies.. the ability to let go of some of the control and to learn to be in the moment with you. I pumped in your rooms today .. sang to you and held your hands while the technician scanned your heads for brain bleeds. I didn’t even watch the screen .. I only looked at you. Neither of you cried. You just held my finger and occasionally opened your eyes. Im comforting you .. I know you know I’m your mommy. I’m working on staying in this place with you.. staying in the moment… the only place fear doesn’t exist. If I am here and you are here.. no worries about tomorrow or regret from the journey in the past.. just here .. everything will always be ok.
The ultrasound tech also gave me an unofficial reading on your head ultrasound. He said he had been doing this since 1983 and as far as he could see everything was perfect. No evidence of brain bleeds!!
Today is a good day. I’ll call and check in later to make sure you both tolerated the increase in your feedings. I miss you already 💙💙
Ps In all the excitement the first few days I never knew your birth length
Maurice at birth 32.3 cm and 790 g – now 33.2cm (13.07 inches) and 770g ( 1lb 11.2 oz)
Peter birth length 33cm (13 inches) and now 36.3 cm and current weight 1190 (2lb 10oz)

They will always know

I will make sure our boys always know how happy you were when you saw two heartbeats for the very first time. I was scared .. 4 kids .. I think everyone was a little scared for us ..but you told me it was the best thing that ever could have happened. You made me believe we could do this. You made me believe we were meant to do this.
I will make sure they always know how hard you work so I can stay home. How important it was to you that I rested and my body and didn’t have any stress from the very beginning. After working for about 17 years you told me, my only job now, would be to take care of our babies and you would take care of the rest. And you did..
I will make sure our boys always know Papou. The beginning of this year brought tremendous loss and such pain when you lost your father to cancer. Somehow, you managed to stay so strong for us and for everyone around you. You were so proud to know you could continue his legacy and name your son after him. You took on the role of your father in business and with your family. Helping everyone just as he did. His colleagues and friends told you how proud of you he would be.. and I know that he is.
I will make sure they always know it was you who also wanted the name Maurice for our other son. That it meant so much to you that he is here and could enjoy it… and enjoy he is ( i think his tattoo is evidence of that) . You said that honoring papa was just as important as honoring your father.
I will make sure they always know how you never gave up on them. When the doctors told us they had “multiple congenital defects” you never pushed me to terminate. You gave them every chance and supported me on my every decision. When I cried feeling lost you held me and took care of our girls. And when I found Dr Quintero , without any hesitation, you were the one to say let’s just go. I was so concerned with traveling but you made it seem like it was no big deal and booked a flight that night.
I’ll make sure they always know how you would come home from work and then start “work” at home. When my body was in too much pain to walk.. you would give baths , clean up dinner and tuck our girls in with hugs and music. You would rub my back for as long as it took for me to fall asleep too.
I’ll make sure they always know how you were romantic even while we were going through this nightmare. You surprised me with a few nights at the shore club while we were in Miami. Not many people get to recover from surgery at the Shore Club. Might not have been the most ideal baby moon but I loved every second of us being together.
I’ll make sure they always know how we traveled back and forth to Florida.. you having to work in hospital rooms, cars and hotels. You did it all without any complaints only worrying about the well being of me and our babies.
I’ll make sure they always know that you saved my life. After the surgery I couldn’t breathe. I was unable to think clear. The nurses said the oxygen level on the screen was not that bad and they were just going to watch me. You begged them to give me oxygen and after a minute of back and forth they did. That night the nurse noticed when she took it off the babies heart beats would stop. The next morning when they checked the oxygen in my blood it was only 60. My chest X-ray was filled with fluid and inflammation. The doctor called rapid response put me in the icu and told me I may need to be on a ventilator. I know you were scared but you didn’t show it. If I didn’t have the oxygen on that night I know our babies would have suffered damage. For the next few weeks you slept on a cold couch and would some night get lucky and upgraded to a recliner chair. You ate subway every night and only left me if I wanted something from the outside for minutes at most. The nurses liked you so much and would sneak you to another floor to shower. You didn’t want to leave me. You made me feel safe.. you kept our boys safe.
I’ll make sure they always know how you did everything you could to calm me during delivery. I was so nervous.. you kept saying just look at me and in your eyes I found some calmness. You ran to take pictures of our boys to show me because I wasn’t allowed to hold them or see them. You wiped my tears as I laid there and again made me believe everything would be ok.
I’ll make sure they know how much courage it took the first time you touched their tiny bodies. There were tubes and wires.. beeps and crazy noises.. you were so scared you would hurt them. It took a few days and then just like that you held their hands. I’ll never forget you smile.
I will make sure our boys always know your strength and your love .. they know what you did for them and our family! I’ll make sure they know they are the luckiest boys because you are their daddy.

Peter’s progress

The NICU dance was in full effect today- two steps forward, one step back. They are big steps forward and we are putting all our energy into that right now ..
James was able to sneak away from work for a few hours this morning and come to see our boys. I was excited to be with him. I had nightmares all night and knowing we would be together today.. even if only for a few hours was comforting. When we walked into the hospital and the person at the front desk stopped us. She wanted to know their room numbers and told us that we would not be able to see our boys for hours because babies were having surgery in their unit. I tried not to go into panic mode. Is it my boys.. are they ok… I gave a release for the doctors to do emergency procedures at anytime. I can’t always be there and need to know they will get the care they need. The woman assured me it wasn’t Peter and Maurice and agreed to call my nurse so I could have an update.
Peter’s nurse came right out. I felt relieved to see her. She was there the first time I met my son. We were in the NICU. I was just wheeled out of recovery about an hour after my c-section. The pain was unbearable but it was hard to tell if it was from my body or my heart. I cried and Hus nurse cried with me. I would later find out that in her personal life she has gone through tremendous loss herself. She understood a mother’s pain. We immediately bonded.
She has spent more time with my son than anyone else. She knows his personality and calls him “feisty”. He already has a reputation in the NICU. We laugh and tell her stories about the Peter he is named after… his Papou. She makes sure he is clean.. and breathing .. and she is his advocate when it comes to his medical care. She knows his likes and dislikes. I consider her to be like family. She said she would take us to see my boys and had the approval of her manager. She knew I would be worried and that I couldn’t wait hours to see them. In only 8 days she knows me well too.
She took us to Peter and I immediately felt better. He gained weight, looked nice and pink and was resting. I really didn’t look at the monitors this time.. just did what the nurses tell me and access the actual patient.. my baby boy. It’s hard but I did it. He had graduated overnight to a new isolette. It is smaller and looks a little less Sci-fi than his original one. The nurse last night told me his environment no longer needs to be so well controlled. A little graduation but our first and it felt so big! He just looked better.
She then started telling us he had a surgical procedure scheduled for the afternoon. I could feel James immediately look at me. A picc line or a central IV with a long catheter that is threaded up to the heart was planned because he was spitting up after feedings. Tolerating feedings is necessary for growth and development just like in “regular” babies. Reflux in preemies is common because the esophageal sphincter is relaxed and gastric contents can easily enter the esophagus. Add to that the tiny wire he is fed through going through the sphincter not allowing it to fully close. I watched yesterday Peter spitting up and struggling to keep his food down. This morning , the doctors changed the delivery to over three hours rather than a big amount quickly. It made sense and I asked if we could hold off on the line until we saw how he did with this change. They first wanted a stomach x ray to be sure there was no reason why he was spitting up. This seemed reasonable.. they said they had to check for areas of dead or ischemic bowel another common issue of preemies. Their little bodies send blood to the most important organs first.. the brain.. the lungs.. and sometimes there isn’t enough for the bowel and it can become necrotic or turn into dead tissue. This made me nervous but I wanted to be sure holding off on the line wouldn’t hurt him. The X-ray technician walked passed us in the hall after completing it and the doctors took a quick look… I hold my breathe.. ” it looks good!” … and I can breathe again. We made a deal that if he had a good night and no spit up we could hold off on the picc line. Needless to say I will be praying all night.
He had a repeat echocardiogram scheduled today as well. He no longer has a functional outflow obstruction. When he was born.. just last week.. the left and right side of the heart were very enlarged from pumping against the extra volume caused by twin to twin transfusion syndrome. Each time his heart would beat a little faster than normal the blood couldn’t come out. At a few days old his feet turned blue. The heart tissue itself was blocking blood flow. This is now GONE! He still has a little enlargement of the left ventricle but I’m hoping this will resolve soon too.
Both he and Maurice went from heart failure to normal functioning hearts in a week!! It’s just so amazing!!! They both have holes in their heart.. Peter a large pda which is common and should close on its own and Maurice a vsd which may require open heart surgery… but the heart function .. the ability of the muscle to pump out blood to the body is now normal. I now look at their teeny bodies as these incredible machines repairing every piece little by little. I am in awe of them.
In regards to Maurice today he is doing well. His kidney function is not perfect yet but getting there. He is tolerating his feedings and slowly growing. He will likely have his umbilical line out in a few days which means I can hold him against my chest… a moment I yearn for.
Everything considered it was a good day. If I am worried about spit up and not heart failure or renal failure.. it is a a very good day. I gave Peter a pep talk and told him how much we love to eat and he will have to learn in this big Italian/ Greek family. I know he can do it! The only other thing was that Peter had an “episode” or ” desat ” today. His oxygen saturation level dropped and he needed to be stimulated to breathe. The nurse was not concerned and said this is also normal at times in preemies but we will be watching him closely.
It is some ride but everyday I’m a little closer to having you home.. I’m thinking of you always .. good night by babies. 💙💙

Nicu Day 9

My mom came with me to see the boys. She’s been watching my girls everyday so I could also take care of my babies in the NICU. She moved in to help me recover from my c-section. She’s superwoman and I needed her by my side today.
We were waiting to find out if Peter tolerated his feedings. If he did, it would spare him from an invasive procedure. I called last night and this morning and received great reports. He had a little spit up but it wasn’t significant. I walked into his room this morning confident we did not need to do anything. He was being transferred from Cpap and a mask to a little nasal cannula for his oxygen. This was a big step in the right direction.. if he tolerates it. I could see his whole face.. he’s so beautiful.. his bed was also upgraded and he is in no longer in what they call a “giraffe.” He has all new bedding and a picture of us. He can’t see it but I know he can feel we are there with him. The nurse let me cradle him for a minute. I didn’t want to let him go.
She told me the doctors rounded early and I had just missed them. She said that he was currently on 13.5 cc of breast milk and needed to get to about 18cc. He only had a day to do it because his old umbilical line ( belly button IV) had to come out and was at risk for infection. He could barely tolerate an increase of 0.5 a day. He also needed to increase his calories from 22 to 24. There was no way he could make that advance in such a short period of time. Because he is not yet on “full feeds” , he needs to get extra nutrients. They do this by giving TPN. You cannot give it in a regular IV because the nutrients are not well absorbed. Also a regular IV in a preemie only lasts a day or so and they would need to be pricked again and again. She told me they decided a PICC line is a better choice. A PICC is a Percutaneously inserted central catheter that travels from a vein in the arm or leg to one of the large veins near the heart. It lasts much longer than a regular IV. She also told me his bilirubin went up and he will likely need to go back on phototherapy. He looked jaundice again today ..
We then went to Maurice. He was already back on phototherapy for jaundice. He had his eye mask back on and was under bright blue lights. He too couldn’t tolerate his feedings. He had some spit up late last night. His goal is 13 cc of milk and he is on 9. They are advancing him slower because of his size .. today he didn’t advance at all just changed it to over 2 hours. He too needs his old umbilical line out and will need access for TPN. Tpn stands for total parenteral nutrition and it is just that. Extra nutrients to help him grow. Today Maurice gained 30 grams to a whopping 830 grams. He needs all he can get. He too will need a PICC or central line. They will need TPN until they are on “full feeds.” I understand why my boys will benefit from it but I still don’t like it.
We went from one needing a PICC… to none .. and now both. The procedures were scheduled for this afternoon. I asked the fellow to do it but he said the NPs and PAs are better than he is. I smiled and reluctantly signed consent to use fentanyl on my baby boys. I listened sick to my stomach as he went over all the risks ..
I met the NPs who were going to be doing it. You feel helpless.. just beg them to take care of your babies. They started Peter and I stood close enough to hear but too far to see. I heard him scream. One of the first sounds I ever heard from my baby was a scream from pain. I cried. After about 15 min they were done. Peter’s nurse said I could go in and see him. He was wrapped up in a blue blanket .. his body still tired from the fentanyl.. and dried blood against his little arm. He did not have as many tubes and wires because they had to disconnect them to do the procedure. He was right next to me… I wanted to hold him so bad. An X-ray would confirm position… and .. success. One try right in. I was so relieved .. it still was not over… Maurice was next.
A different NP did Maurice’s . The same conversation .. begging to take good care of him. She explained she would need to use fentanyl as well.. He is so small.. would it interfere with his breathing… my mind went to so many places.. I just nodded and said I understand. She smiled. After what felt like forever, she came out.. he did well .. just waiting for X-ray to confirm location. I stared down the hall waiting to see the technician. They went in… I stood outside his room.. I couldn’t see him yet. I asked his nurse.. all ok? Could it be in the wrong spot.. is it by his heart .. could it hurt him.. was he in pain? His nurse came out and said they would have to repeat the X-ray. Maurice’s head was blocking and they couldn’t see where the line ended.
They have to call X-ray again.. my baby has to be exposed to radiation again because they couldn’t see. Finally, X-ray came back .. the process repeats.. I wait.. and wait and wait for the NP to read it. She comes out to talk to me. The line is too far up into his neck and needs to be pulled down. I don’t want anyone touching him anymore. I peaked in his room and could see blood on the table next to him. He’s not wrapped up in his little bed .. he’s just lying there with masks on his face. He looks cold and scared. I see more blood on his arm. I just want to hold him and say stop. I can’t .. it reminds me that I can’t take care of him yet. He is too little to survive with me.. it reminds me that I can’t protect him from pain. It breaks my heart.
She goes in again and now I’m praying even harder. Then X-ray .. again. My tiny 1 lb baby on his third X-ray. I’m nervous about the radiation. I’m scared it did something to his neck. She said it is good but it’s not as close to the heart where they usually put it. It’s more of a peripheral line. She told me it doesn’t make much of a difference and he can still get nutrition through it. Also, it can stay longer than a regular iv. I don’t know much about this medicine and it’s hard for me to just accept it. But I do..I have no other choice.. I’m happy my boy can now rest. I run in and check his oxygen to make sure the fentanyl did’t affect his breathing. He’s ok.. then I run down the hall to Peter. He’s ok too…. Mom and nanny not so ok…. I knew this wouldn’t be easy … stay strong my boys and I promise I will too 💙💙

Day 10

woke up telling myself today would be a good day. 10 days old.. how far we have come in only 10 days..
I called this morning and the nurse gave me a good report. My boys were tolerating their feedings, had no issues with the PICC line and Peter only had one episode. An “episode” is when preemies forget to breathe and need to be stimulated usually with light touch to start up again. One episode is actually consider ok and “normal.” Maurice had none and was also doing well. I was even able to pump more today.. it’s a good day.
We went into the NICU unit and they were doing rounds. They started my babies right away so I could be included on their progress and plan for the next 8 hours until they round again at night. Rounds are my favorite part of the day. It makes me feel secure and safe. For me, the more knowledge I have .. every single number .. each lab value and calculation .. brings some kind of strange peace.
They started with Maurice. His kidney function is now 1.1 which is almost normal!! He weighs 1 lb 12 oz and lost about 5 grams yesterday. They are not concerned with his weight loss right now. They didn’t advance his feeding yesterday because he wasn’t tolerating it well, but today there are plans to go up. They are continuing to spread it over a few hours. His lights for high bilirubin are off again and his numbers are normal. Sodium level normal. His next echo is pending to check the status of his vsd and cardiology will see him next week. He’s doing so well.. my baby boy what incredible progress you have made.
Then Peter, kidney function normal.. sodium normal .. CBC normal.. I almost can’t believe what I’m hearing .. back on lights for high bilirubin but this should resolve again. We are still watching his breathing but he transitioned to a nasal cannula and is doing fairly well. His main issue is feeding and today again we are making a big jump but infusing slow to help him tolerate it. I still can’t believe it. I’m not asking if his heart will fail or when will his kidneys start working .. just asking about his feeding schedule. It’s a miracle.
I went in to see them.. Peter looks so big. He lost most of the fine hair that was covering his body. His skin is less translucent. I can see his face and he opens his eyes. I love being with him and watching him. I know he can’t see me but when he looks at me I feel like he can. He had his belly button iv or umbilical line taken out yesterday. Now there is less risk when I hold him. I didn’t want to do skin to skin while it was in because if he moved the wrong way there was a chance it could come out. My biggest fear is that I will hurt their fragile little bodies.
The nurse asked if I wanted to hold them today.. really hold them.. the way I did when I first gave birth to Mia and Juliet.. the way I dreamed of holding my boys since I knew they were inside of me. I immediately said yes. She started the process of disconnecting wires.. unplugging machines.. there were things beeping everywhere. All I kept thinking was is he ok. She kept reassuring me. I had a blanket ready and sat in the chair next to her as she picked him up and started to pass him to me. I could already feel the tears coming. I tried to stay as calm as I could.. She gently pressed him to my chest. He had nothing on but a tiny diaper and his oxygen. I could feel him breathing against me. I wrapped him inside my shirt and held him tight. I could smell him. I know he knows I am his mommy. I couldn’t stop looking up to make sure his heart rate and breathing was ok .. the nurse turned the monitor around so I couldn’t see it. She said said it’s just you and him right now.. I’m so thankful to her for this moment. Time stood still. She came back in and it felt like an eternity and a second all at once. He had to start his feeding. I had to give him back .. but it was ok. Every time I come now they said I could do this. I can hold my babies.
Next over to Maurice. He is still so small and only 1lb 12oz. His eyes have some swelling from the Cpap mask giving him oxygen. Even though his lungs are relatively ok he needs to continue it for the pressure. If there is no pressure his tiny lungs cold collapse on themselves causing something called atelectasis. His nurse repeated the process. The beeping, the wires, the tubes.. a little less scary this time. She joked with me and said soon I’ll be able to pick him up from his isolette myself. I can’t image ever getting to that point but I pray it comes soon. She passed him to me over around all the machines and wires and had to disconnect his breathing mask for a minute. Of course I panic when she takes it off and watch his oxygen but it stayed at 98%. I tuck him inside my shirt , something they call kangarooing. He feels so much smaller and more fragile than Peter. I opened his little hand and placed it on my chest so I could feel him. The Cpap machine was back on and making loud noises but I almost couldn’t even hear it. I just kept telling him how proud of him I was.. how strong he has been… we were told he was likely not going to make it from my very first visit with an MFM at 13 weeks. He said “I do not see you having two healthy babies.” And Maurice, being so tiny… in the less than 1% and his brother in the 90% made it even more scary. His umbilical cord had only two vessels ( when it should have three) and had a poor attachment to the placenta. Add to that ttts and it was not a good situation. He said I just want to prepare you but “at your next visit he might not be here.” I remember thinking I won’t let that happen… and praying .. lots of prayer. And here you are.. I can see you and feel you … it is the most beautiful dream I could ever have.
Any mother knows that feeling.. the first moments when you actually can feel your baby… their heart beat.. their smell.. every breath.. it’s the moment you truly become a mommy. For me that moment was today. Forever grateful for my boys, this moment, and this very good day.
“God knew my heart needed you.”

Newborn pictures in the NICU

I remember driving to the hospital thinking there is a chance they both might not always be here. My sons were in renal failure and heart failure. It had only started to improve for a day or so but still had a long way to go. I wanted to cherish this time I had with them. I wanted to honor this part of their journey. On my hour long plus drive to the hospital… it hit me … I wanted their newborn pictures.. just like I had for my daughters. I wanted this time captured as it is right now. I needed beautiful real photos .. of their tiny fingers wrapped around mine.. the masks and machines..the boxes keeping them alive.. the hole I put my hand through to touch them for the first time.. all of it. It may not be the staged posed creations that I have always loved.. but it’s my boys. It’s heartbreaking and beautiful all at the same time. I didn’t have on an ounce of makeup ..chipped nail polish .. black roots.. none of it mattered. I needed this to show my boys how we are in this moment.. how I am too. I need them to know when they grow up how far they have come. Every minute I have with them is a gift. I messaged a dear friend and incredible doula Renee Pizzoto when we were about 30 min away from the hospital asking if she knew of anyone who might be able to help. A few photographer friends offered but said they were not familiar with the NICU and I was hoping to find someone who had experience in the hospital. She recommended Maegan Dougherty Photography. I messaged her, called her and sent a text. I expected this process to take a few days but was hoping and praying it could be today. I was scared to wait. I gave birth at 28.5 weeks. One of my twins is a little over a pound, Maurice, and my other Peter, is a little over 2. Today they are doing OK but everyone keeps reminding me we don’t know what could happen. Maegan called me back within a few minutes. I told her I was on my way there and she offered to meet me. Within an hour she was there. When I met her, it felt as though I had known her for years. I told her our story .. she listened and comforted me like an old friend. I am in my rawest ( if that is even a word… ) I go from laughing to crying to smiling.. and sometimes I think I’m doing both at the same time. These were taken when the boys were about a week old and I still was in excruciating pain from my c section. I still was short of breath from my ICU ordeal and pulmonary edema a week before. I could barely stand by their little plastic boxes and have never fully seen their faces because of all the tubes and wires. The night before I spent my first night home away from them .. it was very bitter sweet and my emotions were on an even bigger rollercoaster. The nurse asked me to give Peter his first feeding. I had to hold up a tiny syringe that went into a tube directly into his stomach. I’m so thankful to have had Meagan there that day by my side. As simple as it sounds, knowing I have these photos of my boys .. to see how far they have come ..it brings me such comfort and strength. She was so professional, had such a gentle demeanor and I felt safe to feel whatever it was that I was feeling in front of her. I cannot recommend her enough. I’m so thankful to the universe for bringing us all together.

PiCC Problems

I obviously didn’t have a good feeling about my babies getting any invasive procedures. When we were told they needed an iv threaded through their tiny veins up to a large vessel by the heart (PICC). ..I was determined to do whatever we could to avoid it. I got away with it for 24 hrs. After that, it took about 5 nurses and 2 different doctors to convience me they needed it. We were at the point where the risks of keeping in his old belly button IV were high… Risk of infection especially, and they had to remove it. He would need this new PICC line until he could get up to “full feeds” because that would give him extra nutrition. They were so close to full feeds but the dr said there is no was they will get there so fast. They were advancing their feeding scheduled aggressively and they still had some way to go. 2 days ago I finaly signed the concent and agreed.
The procedure was presented as something very routine in the NICU but when it is your baby nothing really is. Nothing about giving these tiny humans fentanyl or sticking needles in their tiny veins can ever be “routine.” They did the procedure and had difficulty with Maurice.. it was traumatizing but I had some relief when it over.
I spoke with their nurses last night and early morning and and all was ok. I love that I can call whenever I want. We were planning on seeing them in the evening. I was uneasy being away from them for so long.
When James and I got there we first went into Maurice’s room. He had one arm wrapped in gauze and on the other a tiny scabbed hole where his line used to be. His nurse told me they had to remove his PiCC line. I held my breath. There are significant complications that could arise from it … was it a clot.. or even worse an infection. They have no immune system and an infection can be devestating to their tiny bodies. The scariest thing about an infection in preemies is that you can’t even tell by their temperature. Because they don’t have an immune system they are not able to respond the way we would. You just have to look at signs like breathing and heart rate. She said it was just inflammation. He had a palpable cord, or area of hardness, along the vein. It was red. My stomach turned. She was so gentle while working on him and did everything she could to reassure me. She had to put in a regular IV and told me by Monday it should be out.
Other than that he continues on CPAP , a pressured mask that delivers oxygen. He is not getting any more oxygen than room air but because he is so tiny he needs it to keep his lungs open. Without the pressure his lungs can collapse. His kidney function and heart function are almost normal and besides his tiny size .. there are almost no signs of ttts. We are just waiting for his next echocardiogram to recheck the tlarge hole in his heart or vsd. Right now it’s not causing any problems but as he grows he may need open heart surgery.. just praying ..
Peter amazes me. He is so big.. and looks so strong. His nurses say he likes to sleep on his stomach and he is cuddled up when we walk in. He was the “recipient” in ttts and received more blood and fluid than his brother. Because of this, he continues to struggle with balancing his bilirubin. Jaundice is caused by the breakdown of red blood cells.. and having more blood he has more jaundice. This will eventually resolve with photo or light therapy. He has been tolerating his feedings well. The nurse let me hold him again. This time I was a little less nervous and it was even more incredible. We sat together for over an hour.
James went back in to visit Maurice while I was with Peter. He never came back… I went into the room worried something might have gone wrong. He was standing at Maurice’s isolette holding his hand. The nurse told me he had just finished changing his diaper. I couldn’t believe it. He had only held their little hands for a few seconds as was petrified to touch them. He didn’t want to hurt them.. and I understood.. but somehow the nurse convienced him to do it and I’m so happy she did. Changing a diaper on a baby weighing less than 2 pounds is not an easy task. There are wires everywhere and they get caught easily. James was standing there with a big smile. My heart lit up.
It was just a diaper change.. we have done thousands and I’m praying have thousands more to do.. but is was special .. I’ll never forget the look in his eyes when I walked in the room.. daddy and his boys.. I imaged everything from their first bath to baseball games .. we have sons .. our boys have completed us .. completed our family in a way I could never have imaged… I can’t wait to take you home .. until routine things are actually routine. Things like changing diapers and not scary procedures. I love you and miss you already.

Separation

Part of being a good mother is learning how to be apart.. or at least that’s what I’m trying to tell myself. Every instinct you have draws you to your babies.. to hold them .. hug them.. feed them. Every part of being a NICU mom fights that.. you need to learn separation.. you use a machine to get your milk .. you touch them for only seconds or minutes through a hole in a box. Your motherly instinct turns into a very mechanical thought out process.. questioning every moment. I remember finding such peace watching my newborn baby girls sleep … it was just heavenly .. now watching my boys sleep.. it’s a new world.. checking the monitors with their breaths making sure they are breathing and their heart is beating. I’m praying to find that peace with them soon.
This weekend we were finally having great reports on the boys. They are tolerating feeds and growing. Saturday during the day we went to a party together as a family. It was incredible to be together.. and we went to see the boys at night. They told us they would likely have their IVs out and no longer need TPN on Monday. My 5 calls a day were answered with “they had a good day mom” and “there are no issues.” No blood work pending .. no renal or heart issues.. it feels like a dream. James and I were with our sons all night Saturday. We helped with their nighttime routine .. which I love.. tucked them in.. and bonded. I cherish the time my husband and I are able to be with them together. I feels like a family.
Sunday morning we were again planning to go in the evening. We spent the day with our girls.. laughing ..in the pool swimming.. they were so happy. Juliet would turn around , look at me and say “mama” holding my leg tight again and again. They too have had to adjust to this new life. I am not able to hold them because of my c-section and prior to that because of TTTS. We spent too much time apart with endless drs visits and now with visits to the NICU. They miss me and I miss them.
After a long day of playing… my sister who lives across the street was surprising us with a firework show. I yearned for my boys but I knew our girls needed us too. A dear friend of mine who is on the same path told me in the beginning .. “your older children will remember” .. they will remember you not being there.. the babies will not and sometimes you have to choose. I’m so grateful for Devan and her support. I called the hospital for the forth time and gave my numbers. They identify mom and dad by numbers you wear on a bracelet and match it with the babies.. I finally memorized them.. both nurses told me our boys were doing amazing. They start with “hi mom there were no issues”… and I can breathe again. I think of them as friends. I told them I may not come .. she told me they were ok and encouraged us to spend this time with our older daughters.
I did.. my husband and I on the lawn .. friends and nephews .. watching the fireworks and eating ice pops.. life for the first time in a long time felt so simple.. so beautiful.. I needed it more than anyone and will never forget it.
I called again one more time before bed and had the same report. I cried a little before bed.. not sure if they were happy or sad tears .. they were somewhere in between .. I held my girls a little tighter and prayed a lighter stronger for my boys. I am so blessed and so grateful for this day.

Together again

Today has been one of the best days I’ve had since this journey began. I have been anxiously waiting for the day my boys could be back together… each day it’s one of my first questions and it’s always answered with “when they are stable enough.”
They have been down the hall from each other. Maurice the first room when you walk in and Peter the last at the end of the hallway. I would feel a little bit of guilt and watch the clock to make sure I spent equal time with each of them when I visited. James and I would even separate to make sure they each had a little of us.
Today I walked in ready for rounds and everyone was standing by Maurice’s room. A nurse quickly took my arm and told me they have been moved.. right away I knew.. the tears started immediately and a few other nurses wrapped their arms around me. They took me into another section.. where the “stable ” babies are.. and right there in the very first room were my boys. Together after 13 very long days apart. They were so connected .. even their blood flow dependent on each other for survival … and now they are back. I thought to myself this is how it is meant to be and this is how they will always stay.
I met my new nurse For the day. She was gentle and kind and listened to our story like an old friend. Maurice and Peter are her only patients for the day. She immediately told me Peter has a “personality” .. her nice was of saying he was fiesty… he has some reputation already. I love it. She helped me decorate. New blankets for the top of their isolettes so the lights won’t damage their retinas and little NICU cards with sayings like “be brave little one” and “I am loved.” Each of them have a picture of our family and a blessed medal. It’s not a nursery but this brings some comfort.
The doctor came in shortly after. We started rounds. First Peter or “baby A the recipient.” Born at 28 weeks and 5 days and now 30 weeks and 4 days. He is 13 days old. For respiration support, he is on “high flow oxygen” which is a step down from Cpap but still a little more than a regular nasal Cannula. It still provides some pressure. He was decreased from 4 liters to 3 liters with no issues. The next step would be one liter and then nasal cannula. They are not changing today but in the next few days that’s the plan. He did not have any episodes of bradycardia ( low heart rate) or desats ( periods of not breathing). He continues to take caffeine to help “remind him to breathe” at 8 per kilo. His echocardiogram from 6/21 showed moderate left ventricular hypertrophy ( thickening of the heart muscle) and a pfo ( hole in heart). His blood work is ok and his bilirubin is 3.2 so he is off of phototherapy. He weighs 1285 grams (2 lbs 13 oz) and gained 40 grams overnight! He had one small spit up but overall is tolerating feeds well and today we are advancing .. right now he is on 24 calories and 7ml of breast milk and donor milk 3 hours on and one hour off. The plan today is advance feeding ( up to 8) and hopefully get off of TPN tomorrow night. One he is on full feeds and off of TPN we can get rid of the PICC line ( his central IV ) and this makes me very happy!!
Next is Maurice or my “baby b the donor.” 13 days old. He continues on Cpap for respiratory support set at 5 and 21%. He is not yet ready for high flow because of his size. Without the pressure of Cpap his lungs could collapse. We will have to wait until he is about 1000grams. He also continues on caffeine at 8 per kilo once a day. He has a murmur and a vsd ( hole in heart) but his cardiac function is improved. We are planning a repeat echo on 7/9. His weight at birth was 790 and today 860 grams 1.9 pounds) . He did not gain and weight last night but the night before went up 30 grams. His IV came out last night and he is on full feeds at 5.6 ml and hr 3 hours in and one hour off. He will go up today to 6ml. His last bilirubin 5.8 and he no longer needs phototherapy. His sodium is 148 and went up a little but we will recheck that tomorrow.
Our plan is to eat and grow. My boys have come such a long way. I know now that they are together they will thrive even more. They can feel each other. They are twins and never meant to be apart .. they both grew to the same beat of my heart. 💙💙

Day 14

The nicu today was such a beautiful place…maybe because I had my mom with me,  or maybe because my boys are doing so well.. whatever the reason may be, it felt like such a safe space and I cherished every second. Peter was so comfortable on his belly.  I was able to see his face today and couldn’t stop staring at him.  It’s like seeing him the first time.  He is tolerating his feeds well and hopefully tomorrow will be on full feeds.  This means his picc line can come out! He looked so peaceful.  I couldn’t bring myself to bother him. I just watched him rest and told him I was there. Maurice looks stronger everyday .. his color is more pink and less yellow.  He has all his ivs out and I know that he is feeling better. He is struggling a little with feedings but getting there.  I held him.. and didn’t want to let him go. I thought of us going home.. the beautiful craziness that awaits.  I thought of how this time together, him on my chest .. with no where to go and nothing to do .. how this time and these moments will never be the same.  There will be “normal life” filled with chores ,cleaning , siblings.. but when we are here, in this space, nothing else matters.  The outside world seems so far away.  They are safe.  It is just us and as much as I want to rush this and have them home with me.. I’m learning to trust it and to accept it.  I have to let go of my plan.. the plan every mom has when they give birth to their new baby .. that plan no longer exists .. I’m learning to breathe .. let go .. and and trust the process. I’m focusing on how far we have come .. not just how far we have to go .  We are not where we want to be , but not where we used to be either.  Happy 2 weeks my little loves… we will get there and in the meantime value these moments together.  

Day 15

The Fourth of July is always one of my favorites. The first big party of the summer… everyone starting to get a little golden… and of course, because it is my anniversary. I woke up to kisses, flowers and cards. I couldn’t stop thinking of how we have come.. playing our story over and over again like a movie in my mind. Our college days .. wedding.. honeymoon.. the birth of our two baby girls… city living to the suburbs.. it’s almost like a dream with some parts so clear and others just flashes in my memory.
I can remember holding your hands during our wedding vows .. the way your skin felt against mine.. the priest surprised us with a beautiful blessing, The blessing of the hands.
“These are the hands of your best friend, strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today tomorrow and forever.
These are the hands that will work alongside yours, as together you build your future.
These are the hands that will passionately love you and cherish you through the years, and the slightest touch will comfort you like no other.
These are the hands that will hold you when fear or grief enter your mind.
These are the hands that will countless times wipe the tears from your eyes; tears of sorrow and tears of joy.
These are the hands that will tenderly hold your children.
These are the hands that will help you to hold your family as one.
These are the hands that will give you strength when you need it.
And lastly, these are the hands, that even when wrinkled and aged, will be reaching for yours, still giving you the same unspoken tenderness with just a touch.”
These words have never been more true. We went to see the boys. They are doing so well … growing and feeding. Maurice lost some weight but the doctors are not yet too worried. They said after TPN is stopped you can sometimes see this. I just listened .. I no longer have to ask about heart failure or renal failure. My questions are about eating and weight gain. Peter looks like a mini newborn. I’m so much more comfortable holding him. He is almost 3 pounds.
But I can’t stop crying .. I don’t know if they are tears of sorrow or joy. I had to be so strong .. for weeks couldn’t feel .. just make sure they were ok.. make sure my girls were ok. Now I can fell again. I miss my girls when I’m at the NICU and miss my boys when I’m home. Everyone is doing better, even our girls are back on a good routine. It’s a scary beautiful ride.
And there you are.. on this crazy rollercoaster.. your hands holding me .. wiping away my tears.. we came home to a house filled with laughter and love. Filled with our closest family and friends. How I love when our home is so full. You bbqed, lit fireworks and made sure everyone had a great time. For the first time in a long time.. life seemed easy..
I know this journey will be filled with many more ups and downs… my heart is split in half.. I’m living separate lives.. my NICU mom life and then our home life. But through it all , I also know, as long as I have you .. holding my hand through it all ..there is nothing we can’t do.

Day 16 / 31’weeks

I believe certain people cross your life as guardian angels and some connections cannot be explained off words alone.. it’s a soul thing.. a feel.   I have shared my inner heart with complete starangers… women who I have met on Facebook groups ( yes Facebook!) who are forever bonded with me through their pain and joy.  There are others .. friends and even acquaintances .. some who I have not spoken to in years.. who have read about my boys and offered such generosity and love.  We are all on somewhat different paths, but our destination and journey is the same.   We are connected by the beauty of a Mother’s love.
Today I was blessed to meet one of these mothers in person. She is pregnant with identical twin girls and after a diagnosis of ttts and some complications .. I messaged her and suggested she meet my miracle worker Dr Quintero.  She is so courageous and strong.  Within 24 hours she met him and he saved her babies.  She is now 19 weeks, doing well and following with Hackensack.  Her story reminded me of how far we have come.. I could feel the fear and pain .. there are no real words to describe that connection from your heart.  She met my boys and I pray seeing them gave her some hope and comfort… her friendship has given that and more to me.
Another woman I have come to cherish is one that I met when I was around 18 weeks pregnant.  I will never forget after my first visit with Dr Quintero .. leaving his office and seeing a husband and wife sitting in the waiting room.  I remembered her face from one of the many support groups I joined online.  I exchanged a half smile with the look of pure heartbreak in my eyes.  I messaged her to find she had to undergo painful laser surgery multiple times and her beautiful boys suffered many complications.  She never gave up hope.  She too has two older children and understands the struggle of leaving them to fight for your unborn babies. She is a constant source of strength for me. She went into labor a week before us and is now the mother two perfect boys living a life parallel to mine.  We continue to exchange stories of NICU mom life.. the constant ups and downs.  I message her daily and am so grateful for her kindness, compassion and love.  Although we have never “met” she has been there for me at some of the worst and best times in my life.  I value and admire her and thank god for her friendship.
There are many others.. women who read my posts and sent comments and messages with no other intention than to send love and true support.  It was a stranger who changed the entire trajectory of my life.. giving me Dr Quintero’s cell phone number late one Sunday night. .. giving me hope when there was none.
Our miracle workers and community of support has been so touching.  We are forever indebted to them all .. especially the very first mother who helped me despite her loss and pain and the doctors we have met along the way .. they true healers and nothing short of angels on this  earth.
Our boys continue to thrive .. we have plans to decrease Maurice’s respiratory support tomorrow and are condensing feeding time in hopes that it will lead to more growth.  Maurice finally gained a little today and is 850g ( up 20 grams ) and Peter lost 35 grams now 1295g.
We have a long road, but it is these connections that have given me the strength to continue on.     When I am afraid to call and get an update .. when I didn’t know if my babies would survive… When I sit in an room filled with machines and strangers touching my babies through a hole.. it is these connections … this energy that exsists between two people .. when the feel seen, heard and valued; when they can give and receive without judgement, and when they can derive sustenance and strength from the relationship .. these are the connections I am so thankful for.  I will forever strive to give the same and remember those who helped heal my heart.  This is my thank you 💙💙

Day 17 CPAP grad ( almost)

Big day for Maurice today! During rounds the resident suggested he is growing and seems strong enough to trial life without CPAP. CPAP is continuous positive airway pressure and keeps the airway continuously open so the lungs do not collapse on themselves. Maurice is doing all the breathing on his own and the machine just helps to keep his lungs open between breaths. If his little lungs don’t stay open he could developed something called atelectasis ( collapse of the small air sacs or alveoli) and this could lead to infection or even worse apnea and difficulty breathing.
He does not like the mask or the nasal prongs used for CPAP. We have been alternating between them to try to keep him more comfortable but he grabs them and tries to pull it off any chance he gets… but I’m not sure if he can handle breathing without it yet. The next step down is called “high flow.” Peter came off Cpap and onto high flow a week ago with no issues. Maurice is still so small so I’m concerned but I think it’s reasonable to try.
We take off his mask and he looks so comfortable. The nasal prongs for high flow are so much smaller and the pressure is not as strong. The respiratory therapist was so gentle and I was so excited for his first big graduation.
She left and I didn’t take my eyes off his monitor. A normal breathing rate is about 40-60. Maurice started breathing between 70-90. The nurse reassured me that it may just be a transitional period. I kept watching .. every time I would call her in to see it .. the number would go down a little… (it’s like he knew..) He was able to maintain a good saturation rate ( percentage of oxygen in his blood) but I could see that he had to work harder to breathe.
I waited about 5 hours. The resident came back in to check on our progress. I advised her of the status and she agreed to put him back on CPAP. My main concern is that Maurice is so little. If he has to work hard to breathe, he is going to burn too many calories and that will interfere with his growth. He just isn’t ready yet… and that’s ok.
Peter wanted some attention too today. After a few days of not much action .. the boys kicked it up a notch. They said during rounds, his night nurse discovered a “bump” on the back of his head. I held him for an hour yesterday and did not feel anything so whatever it is developed overnight. It’s half hard and half soft.. no one is sure what it is and they ordered an ultrasound. The doctors do not seem too concerned about it but of course I can’t help but conjure up a crazy differential diagnosis. We are still waiting for the official result and maybe a dermatology consult.
Overall it was a pretty good day. Peter gained 45 grams and Maurice lost 10. Nothing too significant. I’m confident in their care and as hard as it is .. had to leave before getting official results. I’ll likely call every hour until I know what it is but they reassured me if it was anything urgent or dangerous I would have already been notified.
I miss them already .. today it was a little harder to leave. Praying for some good news tomorrow xx

Day 18 in daddy’s arms

There are moments you will never forget. They get engraved in your soul . The first time you hold your baby is forever one of those moments.. but when your baby is a preemie or in the NICU it takes on a new meaning. The room is lit dim with an occasional red alarm light flashing and there is a constant hum of beeps. Tubes, wires and monitors are juggled by a dozen nurses and for us it’s times two with the boys in the same room. In the middle of it all, is our tiny fragile babies .. born months too soon. Babies that’s wouldn’t survive without it all.
I knew we would be NICU parents after our laser surgery. I was as prepared as I could be for this .. but I still anticipated that moment. The one where I hold you for the first time. I had such a beautiful experience with your sisters Mia and Juliet and it was the greatest few seconds of my life. But as this pregnancy has showed us .. nothing can be planned.
During your birth, I laid behind a blue paper curtain. James next to me holding my hand.. waiting just waiting for a sound a cry.. and to see my boys. For months I prayed.. thinking I will lose you. There was nothing I wanted more than to feel you next to me. After what was an eternity, I heard it. Your first cry. I tried to look around the curtain but couldn’t see. And then about a minute later, it was Maurice. Another cry. I knew you were here. It was real. James went to them and the team of 20 working so hard to keep them alive. He took a picture with his cell phone so I could see. My boys are so beautiful ..
I took a few days until I could hold you. I still have never held you both together but I’m dreaming of that moment.
For daddy.. he was not ready. It takes a team to transfer your tiny body and the trail of wires to my arms. The sounds and lights are so scary. Today we are going out on our first date night and daddy and I stopped to see you before we went. Our nurse is wonderful. She made James feel comfortable and ready. He didn’t have much time to really think about it. He was sitting in the big special recliner chair and getting ready to hold you for the first time. I could see in his eyes fear and excitement all at the same time. We watched as she started unhooking all the wires one by one. She gently placed Peter, our 2.15 lb baby, on your chest and reattached everything that came off. She covered him becuase he cannot yet maintain his body temperature. James held so tight .. he didn’t take his eyes off of you… and then my little Peter you looked up right in his eyes. This moment for me was just as beautiful as the first time I held you and your brother. Seeing daddy with you .. I will forever cherish this father and son💙💙
My precious baby boy Maurice mommy held you. You are still on CPAP and require a little more care at less than 2 pounds. Next time daddy will be ready. How I love holding you my boys and feeling your tiny hearts beating with mine. And having us there with our boys in our arms for the first time together gave my soul what I never knew it was missing. It is all well worth the wait.

Day 19

There are a few voices your baby will hear as often as your own. For my boys, one of those familiar sounds belongs to auntie. We live footsteps away and she has helped me everyday on crazy journey. From pick ups and drop offs, to pool parties and sleep overs.. she along with my mother, ensured my girls would never feel anything was out of place.
Somehow, through all the tears and fears, my girls were able to maintain their happy life surrounded by constant love and support. None of what I did would have been possible without them. I never would have been able to leave and travel to Florida multiple times. I would not have been able to give my boys the best care available. Knowing my girls were always ok was just as important as taking care of my boys.
My babies are blessed beyond measure to be loved by you and I am forever grateful to have you by my side. I love you sis 💙

Growth

Growth.. for me and my sons.
Just for today;
I will focus on living in the moment.
I will be mindful not to look into the past, nor worry about the future.
I will promise to put all my energy into being fully present in the here and now.
I will surrender all my fears and worry to the universe, allowing only peace, love and tranquility within my soul.

If I want my boys to grow .. I must promise to grow along with them. I have to let go of the how’s and why’s and accept there are many things I will never fully understand. I continue to play the last few months over and over in my mind .. like a book I can’t seem to close. I battle between surrender and control.. trying to prepare for every situation. But if I can accept .. just for today… to live in the moment .. there can be no fear and no anxiety. To find peace I have to let go and of the past and accept my worrying will not change the future. I have to grow… I can do it for 24 hours and then another 24.. and another ..
My boys are still struggling with growth. Maurice is about a pound less than his brother. He weighs 860 grams or 1 pound 14.3 oz. It hasn’t changed much over the past week. The doctors are concerned and increasing his calories to 26 calories over 90 min. It is harder to tolerate but we don’t have a choice. The next step will be to increase his feeding time to 60 min and we will likely do that tomorrow. They said some of the fat can get stuck in the feeding tube when it is spread out too long. After this we would stop breast milk completely and go to straight formulam. If his growth doesn’t start to improve it can be due to the hole in his heart and it may need to be repaired. The doctor continues to reassure me that we are not yet at that point, but the thought of him having to undergo open heart surgery is one of my biggest fears. He still looks so fragile. He did graduate today out of his giraffe ( giant nicu bed) and into a smaller isolette which was exciting to see and made our room a little more comfy.
Peter is officially over 3 pounds at 1420 grams or 3 lb 2.1 oz. His feeds are also getting increased today to 28 ml over an hour. We are maintaining 24 calories because he seems to be doing well with it. He still has the cyst on the back of his head but they have confirmed it is superficial ( outside of his skull) and should not affect his brain. The only treatment for now is to keep pressure off of it and “watch.” This is so hard for me to do, but I understand at this point there is no other solution. I do not want them to put a needle in it to biopsy it so we just have to wait and see. It doesn’t seem to cause him pain which is very reassuring. It is not getting better but doesn’t seem to be getting worse either.
My highlight of the day was the boy’s echocardiograms. I have been waiting for the repeat scan of their hearts since the last one over a week ago. Maurice’s large ventricular septal defect or VSD seems to be getting a little better. The nurse couldn’t give me the details but other than that said not much changed. The cardiologist didn’t read it until late and she didn’t have all the details but we set up a time for me to meet with them tomorrow. Overall she reported it “looked good.” That will at least let me sleep tonight.
We have already grown so much together. My faith had grown becuase of my boys and my heart bigger than I ever could imaged. For now, we will just focus on day to day .. even hour to hour.. until I have you in my arms again xx Each sleep I miss you more

Update: tears and bad dreams at 4am.. I guess I still have to work on my subconscious 💙 a good affirmation can only do so much

Day 21 3 weeks

We started off with a good day. Maurice gained weight and is now so close to 2 pounds ( 1lb 15.6 oz) . He is tolerating 26 calories so far with no issues. Peter has me a little concerned today. (They take turns) His heart rate seems to be about 15-20 beats above what his normal baseline usually is for the past few days. When I asked to see his blood work I was surprised to see his last WBC count was about 2x higher than it normally is.. in the 20’s. He also had high platelets. I was even more upset because this was not discussed at all during rounds for the past couple of days. I had always asked to see the blood tests but recently I was told everything is ok and I stopped asking to see them. I asked to speak to the doctor and she said it could just be his bone marrow working ..she showed no concern at all but agreed to recheck it. A high wbc can be a sign of infection and given the lump on the back of his head.. I am very concerned. The lump has not changed and again no one seems to want to do anything other than just “wait and see.” They are just watching and refused to even call dermatology. Obviously abnormal blood tests, a fast heart rate and a lump that no one can really explain is all adding up to a very very concerned mama. Today they are rechecking his blood panel and hopefully will know more soon.

Resolution

My mom came with me yesterday to visit the boys. I always love the days when we are together. She helps keep me relaxed and I needed her by my side. When we walked in the greeter said, ” …you know your boys moved right?”   I didn’t know.  She continued “.. they are in the sunshine room now.”  The sunshine room is a beautiful room filled with big bright windows that let in lots of sunlight, hence the name, sunshine room. It is reserved for all the healthy babies that are getting ready to go home. I couldn’t understand how we went from where we were to there overnight .. but for a minute I was excited. She told me they were just doing work in their old room and they would have to go back by the afternoon.. that made much more sense.
I walked back and was met by a new nurse for the day.  She checked my bracelet and numbers. This is how they identify me as their mother. I was prepared with my 100 questions. I ran to Peter’s side of the room and my eyes went right to the monitors. I felt his head. The lump grew. His heart rate was 200. I checked his temperature 99.9. Now I’m upset. My main goal was to find out what is going on with Peter’s head and heart rate. I asked her the results of the blood test that was ordered yesterday and they were not back yet. She said the night nurse reported he had a fast heart rate and was ” tachycardic” and again this morning his heart rate was still fast. She also told me she was having a hard time regulating his body temperate. I’m right away thinking fever and infections. She called the doctor for me. She listened to all my concerns and validated them all but did not have answers.
My nurse insisted I hold my boys. I was visibly upset staring at his monitors, watching his heart race and alarms go off. She persisted. I wanted to wait for the doctors..I wanted to be prepared when they came in. She wouldn’t stop. I looked at them inside their box and couldn’t resist. I changed into my dreft washed kangaroo shirt and sat up in the recliner chair. She quickly passed me Peter. I almost didn’t hear the alarms or see the wires. I tuck him inside my shirt .. skin to skin.. and instantly feel better. Leave it to the nurse to know exactly what a mom needs.
I’m watching his heart rate.. over the next hour go from the 190’s.. to the 180’s and then eventually settle at around 160’s which is normal. He looks comfortable. Everything begins to regulate. His temperature.. his heart rate.. his respiratory rate.  She said she wasn’t able to accurately control the temperature in his isolette anymore. His probe kept falling off ( the other nurses for the past few days have been telling me the same) and it kept getting very hot inside. She also said he is ” big now” and doesn’t require as much heat. She shut off one of the main heaters in there and dressed him in his very first shirt. It was a size newborn but still huge in him. He looked so cute. When she put him back in his vitals remained stable. He looked the way he did a few days before. Peter was trying to lift his head and back to his feisty self. I think she solved the heart rate issue…he was just really hot. Another reason why Our nurse is one of the best I have ever had. It’s hard to believe that sometimes things that simple go missed.
The doctors came in. I reiterated my concerns. The growing “lump” on the back of his head is my main focus. It’s bigger .. noticeably larger and harder now. The ultrasound over a week ago showed nonspecific fluid. The doctors told me they never saw it before and the nurses are not familiar with it either. The treatment was to keep pressure off of it. They concluded “something must have irritated the back of his head” and by relieving pressure it should improve. Well it didn’t. Now I want an answer as to what this is. They continued to tell me it didn’t look like an infection because he didn’t look “sick.” Sick babies have trouble breathing and need more oxygen etc. This is not reassuring. She also said his white blood cell count got a little better and if was an infection that would not be the case. I wanted to be 100% sure it is not infectious or dangerous… Some kind of diagnosis other than non specific fluid. They told me even an expert might not know what it is. My response was at least we try to figure it out.  I wasn’t leaving this hospital without an answer.  I waited for the ultrasound.
In the meantime, I cuddled my Maurice. He’s growing .. tolerating 26 calories well. He is still on it over 1.5 hours and the next step is to try it over 60min. I’m going to talk to them about that plan today. His weight is 15.9 oz.. he is refusing to get to 2 pounds but slowly growing. He looks so happy today.. vitals are perfect. I held him and he snuggled right in. There is always some sense of guilt when I am holding one and not the other. I try to watch the clock and make sure the time is equal as best I can. He feels so tiny after holding Peter. Maurice opens his eyes and stares into mine. I hope he knows how much I love him.
They come in the room to do Peter’s ultrasound. It felt like an eternity. It’s the same woman who did it the first time and I’m happy about that. Ultrasound is very technician dependent. It is very easy to make something look bigger than it really is. She seemed very thorough and having the same tech makes it better for comparison. She commented right away on the size saying it looks much bigger and firmer. She downloaded the images immediately and we waited to hear from the doctor for the results.
While we waited, we were visited by a social worker. My mom and I were about to finally have our first meal of the day at 4pm and she walked in and told me I had to sit with her. I think they called her in on me because I was still visibly upset. The “we don’t know ” approach and ” wait and see” does not work well with me. I let it go for over a week and now it was time for more answers. She wanted me to sit back take some deep breaths and meditate.  I told her I’m all about the zen but explained my situation and that I needed answers now. She continued telling me how important it is for me to be able to relax .. it really only made me more anxious… and by now I was hangry. I told her I appreciated her efforts,  but for now to just accept where I was and we can revisit the mediation at a later date.  My mama was even more hangry and just waited outside. She helped walk us to the cafeteria.
We ate and had some conversation. It felt nice to leave the room for a little while but I couldn’t wait to get back. When we returned,  My nurse told me we just missed the doctor. She had the results and was coming to discuss them with us… after sitting there all day I couldn’t believe that in our 30 min break we missed it. Thankfully she came back. She said it did grow. She called the radiologist and he told her he had seen it before. He called it a cephlaohematoma. It is a traumatic subperiosteal hematoma ( collection of blood), that occurs underneath the skin, in the posterium of the infants skull bone. Basically,  it is damaged blood vessels that broke.. (usually during a traumatic birth) or can occur with multiples, that resulted in unnecessary pooling of blood on top of the skull bone and inner layers of the skin. It is not inside by the brain rather superficial or on the outside. It usually calcifies and becomes harder and larger before it reabsorbs. The process can take a month and does not cause any harm to the baby or brain. This made sense. It looks exactly like what they are describing. She did however say she will bring in a plastic surgeon to evaluate it. According to our doctor, plastics should have more experience with this. I’m surprised this diagnosis and took this long to figure out,  but I’m happy at the end of the day we have some resolution.
Peter smiled when I took his picture.  I think he just wanted some attention because Maurice has been stealing the show for the past few days.  I left feeling ok. Sad to leave my boys as always but having some peace knowing these “mysteries” have answers. His heart was racing becuase he was hot.  Something that simple.. not anemia or an infection he was just hot.
I’m so appreciative to their beautiful nurse yesterday.   I will continue to take an active role in my children’s care.  I am their mother and will live my life protecting my babies in any way I can 💪🏻💙

Day 23-32 weeks

Today was my third “goal” during my pregnancy.. there was no more actual due date. We had short term goals.. 1st make 24 weeks, then get to 28, and then 32 weeks and you will be ok. When me made it past 24, I felt like a superhero. No signs of ttts, babies were growing and healthy and I began, for a short window, to celebrate my pregnancy. I worked hard on changing my mindset and envisioning my boys in our life. I started a nursery and my husband painted a beautiful room and put together cribs. I needed to see it. I needed to believe with every piece of me that they would be here. I would never give up on them.
As we became close to 28 weeks, my body began to change. My belly shifted to one side. I became short of breath and gained 10 pounds in a few days. I had so much pressure that it was almost impossible to walk. And then came the contractions. By your third pregnancy you have a good idea of what to expect. This was not normal. We were about 27 weeks and I knew I had to at least get to 28. 28 weeks is a vital stage for lung development. By this time, tiny air sacs known as alveoli are developing and surfactant is excreted. I knew my babies would face cardiac and kidney problems because of twin to twin transfusion syndrome and if they had to fight lung issues as well the outcome would likely be poor.
Our condition changed within a few days. We ended up in labor and delivery with significant contractions at 27 weeks and were faced with a difficult decision. The boys went from a healthy environment to now full blown stage three ttts. Peter was swimming in 3 times the amount of normal amniotic fluid and his heart was starting to fail, having to pump again all the extra pressure. Maurice was now “stuck” having no fluid at all.. his bladder was no longer visible on ultrasound because it completely stopped working. He was in kidney failure. He also stopped growing and his heart was struggling from the additional stress.
After my ultrasound , our incredible doctor, Dr. Alverez – Perez called Dr. Quintero before speaking to us. They came up with a plan. We could either deliver right now or fly to Miami and have a surgical procedure. If we delivered now there would be an 80% the babies would survive. When he told us this all I could hear was a 20% chance they wouldn’t. We also knew the likelihood of long term complications was high. If we had the surgery, there was a 80% chance we could make it to 32 weeks. The main risk with the surgery was losing one or both of my boys. During the procedure they would separate their blood flow. We knew Maurice likely had less of a placental share ( because of where his umbilical cord was and also because of his small size). If his main blood supply was coming from the connecting vessels he and Peter shared, there was a very good chance he would not survive. If we did nothing and just waited we would likely lose both our boys. We were past the technical ” cut off” for surgery which is 26 weeks but Dr Quintero still agreed to do it.
When we went to Dr Quintero and Dr Alverez, I promised myself I would trust them. I knew we were in the best hands and I would do whatever they recommended. Both of them agreed that surgery would give our sons the best chance.. so that’s what we did. I am forever thankful to my husband for supporting this and every hard decision we had to make. They gave me medication to stop my contractions and I flew praying I would not go into labor. In less than 24 hours were in Florida being operated on by the man who developed this life saving procedure and the instruments used during it.
It was not easy…Physically and emotionally. I prayed during the surgery. I watched on a screen as a laser burned vessels connecting my boy’s blood.. I held my breath thinking it may be the last time I see them. A few hours after surgery, it was time to check the boys. I remember being too afraid to watch and just stared at my husband. Dr Quintero jumped up .. so excited. The boys very ok.. actually better than ok.. Maurice’s bladder was visible and his kidneys were working again. This indirectly meant he was able to get good blood flow and there was a chance he would start to grow again. Peters fluid level was also normalizing and his heart improving. It was a miracle.
I had a few complications and ended up in the ICU for about a week. We would be monitored closely everyday. When we were ready to go home 32 weeks seemed real again. We could make it. At the very least we surpassed 28!!
A few days after coming home.. the symptoms came back. I knew it was time. We were 28 weeks and 5 days when we went in for our visit .. and discovered ttts returned. We quickly ended up having an emergency c section.
My boys came out crying.. their lungs were strong! I could hear them as I laid behind a paper blue curtain. They wouldn’t let me see them but I could hear them. I know the surgery is what saved our boys. They were in heart and kidney failure and if they also had underdeveloped lungs the outcome would have been very different.
We did not make 32 weeks the way we planned… but in life what can you really plan. We are here and our past already seems so far away. I look at their cribs everyday .. I sit in their rocking chair and can almost feel them in my arms .. everyday a little stronger ( Maurice is officially 2 pounds and Peter 3.4) and little closer to home!

Day 24

Today we are feeding and growing! Maurice’s weight was 2 lbs yesterday and now 2lbs 1 oz today (up 5 grams). Peter is 3lb 54 oz and gained 15 grams. My boys were born about 3 months early via emergency c section. My body was not ready for them and my milk production continues to be suboptimal. Having two babies makes it even harder to keep up with thier requirements. As much as I am trying, it’s not happening. I’m pumping around the clock using a hospital grade pump, eating oats, drinking Mother’s milk tea and gallons of water and eating Lactation cookies. If they say it may help and can’t hurt.. i’ll do it! But each pump session leaves me with half an ounce if I’m lucky. Because my boys are my third and fourth babies, I was pretty well prepared that this would be the case. I have had so much support from the NICU staff and Lactation coaches who are always here to help. They encourage my every drop and make me feel like wonder woman for each ounce I pump, but I am not able to sustain my babies on that alone. Luckily there are other alternatives. There is no doubt that breast milk is the perfect food for infants ( especially premature NICU babies) and the best breast milk is your own. But in my case, and for others who are not able to supply enough, there is the option of donor milk. Donor milk comes from a milk bank and is sent from “gifted” mothers who pump more milk than their babies can eat. It is regulated, undergoes extensive screening and tested as well as pasteurized to kill any harmful bacteria. Unfortunately, during the pasteurization process , some good things are also sacrificed, such as immunological and nutritional properties. It still however contains many benefits that commercial milk products are not able to duplicate. It is easier on thier digestive system and can help to prevent infections especially late onset sepsis and necrotizing enterocolitis (NEC). It is also known to reduce retinopathy of prematurity ( eye disease). Babies given human milk in the NICU have been shown to have fewer re-hospitalizations in their first year of life and improved neurodevelopmental outcomes. In addition, they have lower rates of metabolic syndrome, lower blood pressure, decreased bad cholesterol (ldl) and less leptin and glucose resistance when they are adolescence. Basically, breast milk results in a decreased risk of developing eye disease, brain issues and heart disease or diabetes, just to name a few.. it’s pretty amazing! I’m so thankful to all the mothers that have donated to milk banks. My babies continue to receive donor milk in tandem with my expressed milk. I’m also so appreciative to have the education and support from my Lactation coach about donor milk. Thanks to the generosity of strangers, my babies have had the benefits of breast milk and the best nutrition I could provide. I will be forever grateful to all the mamas that are giving my babies this gift of health. Please consider donation if you are one of these lucky mamas..words cannot express what it means to those who receive it. https://www.nymilkbank.org/ Milk donation If you are able to donate click the link above for more information

Day 25 and 26

You can do anything, but not everything.
The key to keeping your balance is knowing when you have lost it. The scale has been favoring one direction for months. It’s safe to say we have lost balance. We had to devote so much to the boys and the pregnancy. There has been very little left for everything else. Our sons are not yet “ok”.. but have improved so much. I’m trying to restore balance and allow myself a “day off” to reconnect with our girls, family, friends, each other, and most importantly, with ourselves.
Saturday, our morning and afternoon was with our boys. When we walked in the room, I was so happy to see a familiar nurse. She was the one who placed Peter in my arms for the first time. She knows my boys well and takes such wonderful care of them.
She had a great report for us. Peter was no longer on Cpap or high flow and was doing well with just a nasal cannula on 1 liter. This means his respiratory system is stronger. He had some tachypnea (rapid breathing) but it was not significant and he did not look like he was straining or using accessory muscles to breathe. Overall he is excellent! He also gained 50 grams and weighs 1565 grams or 3 lbs 7.2 oz.
Next Maurice.. he’s still on CPAP. We had a trial without it and he did not seem comfortable. Also he is struggling with weight gain and we don’t want him to waste any calories trying to breathe. The best news was that he too gained weight (40 grams ) and now weighs 975 grams or 2lbs 2.4 oz. The doctors decided to continue 26 calories for him but were going to increase the volume of his feeding. Weight gain is so essential for him. He struggled tolerating feedings in the beginning and everyone keeps reassuring me that we are just “playing catch up ” now and he will get there. It makes it harder when you see him in comparison to Peter but I continue to try and stay as positive as I can.
This is as good as it could get. Both boys gaining weight and stable.. at least for the few hours when we were there. James and I went to the hospital together. The over 2 hour car ride and time spent in their room is such incredible bonding time for us. I’ve come to cherish it. I know when we are all home, there will be few times when it is just us and our boys.
We left after a few hours and managed to make it in time for our nephew’s second birthday. Our home was filled with love and laughter. We had all our family and friends with us. There was even Mickey Mouse and an ice cream truck. It felt so wonderful to smile and live like things are “normal.” But in reality .. they can’t be right now. Even happiness makes me feel guilty because of how much I miss them. It’s a part of me that is empty and can only be filled when I am with them too… for now all we can do is try to find balance.
Before James and I went to bed, I called the hospital again. The report was just as good as it was earlier and I made the decision to devote Sunday to each other and our girls. We woke up to a rainy day and went to see a movie followed by a beautiful lunch. I think the girls needed it as much as we did. They were excellent and extra affectionate. We are so lucky to have this time.
I tried not to call the hospital too much and kept telling myself they will call me if there are any issues. I’m striving to be the best mom and wife I can be.. I’m learning so much about love and life from these tiny little souls. I think we successfully restored some balance this weekend and I’ll continue to work on keeping it ⚖️

Day 27

I couldn’t wait to get here today. The girls woke up so happy ..we had such a wonderful weekend together. Mia sang .. “ohhh I just want to feel this moment..” the whole time I did her hair getting her ready for camp. We made pancakes together and off she went to auntie’s house. Jules was playing with her nana and babies and was as cute as could be. When we were about 15 minutes away from the hospital the doctor called me. My heart drops. Maurice’s hemoglobin is low and he will need a blood transfusion today. I told them I was close and now even more so couldn’t wait to get there. When I walked in the doctors were still nearby and came into our room to explain everything in detail. I listened closely as I stood over Maurice’s isolette, wanting so badly to pick him up and hold him close. They explained that it is common for babies born early to develop anemia of prematurity. His bone marrow, which makes blood cells, is not able to keep up with what his body needs right now. He has a good reticulocyte count, and this means there are some new red blood cells being produced, but it is not enough. Hemoglobin is the protein inside the red blood cells that carries oxygen. When levels of hemoglobin drop too low, vital organs don’t get the oxygen they need and it can result in a stroke or heart attack. With Maurice’s small size and underlying heart issue ( hole in his heart) it’s even more important that we do whatever is needed to maintain healthy levels. I’m glad the doctors found this on his routine blood work. He looks pale in color and his heart rate is high. These are all symptoms of anemia. He already has an IV in his tiny vein in his leg and they have started to give him blood over 3 hours. We will recheck his levels in a few days and I’m praying he does well. He lost some weight the day before and now gained about 15 grams. He is back to 975 grams or 2 lb 2 oz. Overall he is struggling with weight gain and after his transfusion we will revisit this. Today I also found out he had some abnormalities on his newborn screening blood tests. Newborn screening labs are used to check babies for potentially harmful or even fatal disorders that are not apparent at birth. Each state tests for different abnormalities. (Click link to see what your state tests for ) According to the doctors they found some abnormal levels in Maurice’s labs. There are many false positives and they will have the genetic specialist review it as well. I understand that this is a screening test and not a diagnostic test so I’m trying not to panic. Initial screening provides only early information that is then needed to be followed up with more specific tests. My poor little guy can’t catch a break. I know he will be the strongest of them all one day! Peter had a hard night as well and had to be put back on high flow oxygen. He was working too hard trying to breathe on nasal cannula and , after a good trial , we had to go backwards. He’s not ready yet. He did gain some weight again and is now 1590 grams (up 20 grams ) or 3 lbs 8.1 oz. Today we are condensing his feedings to over 30 min. He seems comfortable and I even dressed him in real clothes. Throughout the past week, the boys have been getting accessed for a big milestone, bottle or breast feeding. When they turned 32 weeks the nurses began to watch for cues. Cues are their way of talking to us and telling us when they are ready to start eating by mouth. Behavior, facial expressions, movements, breathing and wakefulness are all signs. Each of these signs correlate with a number or score. When they are at mostly 1’s and 2’s for about 5 days they will be ready to try. They also need to be off any significant respiratory support and the feeding tube is usually moved from their mouth to their nose so it doesn’t interfere. Peter is mostly scoring 3 and 4’s and is still on high flow so it will be a while. Maurice is on Cpap and bottle feeding for him still seems so far away as well. The idea of holding them while they eat and not have it passed through a plastic tube in their stomach is something I’m dreaming of. I knew in the beginning blood transfusions were a common thing in NICU but that doesn’t make it any easier. I feel guilty that I wasn’t here yesterday but I know in reality that would not have changed anything. I held Maurice first while we waited for his blood. I didn’t want to let him go. I’m starting to get into a routine here. Pump .. hold one baby .. pump again .. then hold the other. There are no windows and it’s east to loose track of time. There are other moms here, across the hall and next to you.. we all exchange half smiles when we make eye contact .. connected by the pain and beauty of a mother’s love. Today is a hard day. I’m so thankful for the beautiful weekend I had with my family. It helped to recharge me and get me through. Our nurse told me today that they look like me.. this was the highlight of my day. I can’t take my eyes off Maurice and will stay with him until I can be reassured he tolerated his transfusion well. It will be a long night. Please keep your prayers for my babies during this little bump in our path.

Day 28/29

Difficult roads often lead to the most beautiful destinations. There are some moments in your life where everything makes sense.. there are no actual words that can describe it.. it’s just a feeling .. when everything comes together perfectly .. even if just for a second.. you loose all sense of doubt.. you don’t question why or how.. you just let it be and your heart feels full. Today, I am so grateful for one of these moments.
This morning when we called, the nurse was a little concerned about Peter. His hemoglobin was low and his heart rate fast. He seemed to be having the same issue Maurice had a few days prior. The boys are about a month old. All of the blood cells they received from me and, in Peters case, from Maurice, are breaking down. The life span of red blood cells is about 35 to 50 days in a preterm baby. They are being broken down faster than new ones can be made. It seems that this is a common problem in the NICU. They were going to discuss it with the doctor on rounds. I couldn’t wait to get there and be with him.
When I walked into the hospital, the doctors were all already in our room. They said he seemed pretty stable and although his numbers were not “great” ( hematocrit 27.5 and retic count of 3) his tachycardia or fast heart rate was not sustained and we could just watch him for now. They will recheck his blood next week as long as he doesn’t show any significant symptoms such as requiring more oxygen or having a fast heart rate for longer periods of time. It always concerns me .. the watch and wait… but right now it’s the best we can do. Blood transfusions are not without risks and as long as he seems comfortable we will wait. He gained some weight today and is now 1385 grams or 3 lbs 11.4 oz (up 30 grams from yesterday.) He is tolerating his feedings over 30 minutes and looks wonderful.
Next, they review Maurice. He also gained weight and is 1010 grams or 2lb 3.6 oz ( up 40 grams.). He is tolerating his feeding over 60 min and overall doing well. The genetic specialist was not overly concerned with his state blood test and only recommended to repeat it in about a month. He seems to be tolerating the transfusion well and his numbers are stable. The plan for Maurice is to give him another trial off of CPAP tomorrow. He’s a little bigger and stronger now and the doctor thinks he’s ready.
As soon as I heard this I asked if I would be able to hold them together. I have been dreaming of holding my boys at the same time and having them next to each other since delivery. Initially, I was told they would both have to be off CPAP to do it.
Today my beautiful nurse and the doctor said I didn’t have to wait. My heart skipped a beat! The wires and machines involved are very complicated. If Maurice’s mask looses pressure it’s very hard to get back and usually requires a respiratory therapist. She didn’t seem concerned at all and made me feel so safe and ready.
I put on my kangaroo shirt and helped get the boys ready. I changed their diapers and checked temperatures. I love doing routine things with them. It helps make the NICU seem a little more “normal.” I sat in my big mommy recliner chair and waited as she unplugged the wires and machines. One by one alarms were going off. I have become used to them now but I still can’t help looking at the monitor. First she passed me Peter. I tucked him into the pocket inside my shirt and rested his little arm against my chest. He curled up right away and looked so cozy. She then walked over to Maurice. His machines took a little longer and beeped a little louder. I could hear the pressure stop when she disconnected his breathing mask to put him on me. It’s only for a few seconds but it makes my heart stop. Finally, she had him in a comfortable position and reconnected everything one by one.
Maurice and Peter both opened their eyes and looked at each other. I put their hands close and told them over and over how special this moment was for me. I told them how much I love them and how I always knew we would all be together… and now after 29 days here we are. My boys have transformed me .. this journey of highs and lows .. the people I have met along the way.. it has taught me so much about love. Each one of us has our own evolution of life, and each one of us goes through different tests which are challenging and unique. Many times it’s the journey that teaches you the most about the destination. God bless the broken road that led me to you my loves.

Day 30 one month

Happy one month to my beautiful baby boys and happy birthday to daddy! A day of celebration.. both boys gained 30 grams last night. Peter weighs 3 lbs 12.5 oz and Maurice is 2lbs 4.7 oz. Maurice has been off of CPAP since this morning and is doing so well! When we tried 2 weeks ago he was not able to breathe and we had to put it back on it after only a few hours. Today, his heart rate and respiratory rate are normal with only minimal support called “high flow.” He no longer needs all the head gear and this is much more comfortable. It also means I get to see Maurice’s face which is still so new to me. His eyes are swollen from all the pressure of the mask but that should resolve soon. It’s like meeting him for the first time all over again! The highlight of my day was of course holding them together… Feeling them against my skin and watching them hold each other’s hand. It’s just magical. The bond they share is unbreakable.
Tomorrow we start changing to formula .. the doctors need to know the exact amount of calories the boys are getting and in breast milk they cannot measure it accurately. They said donor milk is available for 30 days of life and today is the last day. They will still get whatever I can supply but it will now be supplemented with formula. I’m not crazy about this, but I understand how important growth is for them right now. They are keeping Maurice on 26 calories and Peter on 24 calories. The goal is to also try to decrease Maurice’s feeding time ( he’s still on 60 min) but first they want to make sure he can tolerate the formula.
They also have plans to meet with physical therapy for an assessment. I was told this is routine for very premature babies like Peter and Maurice. They work with parents and staff to promote comfort and good positioning. They also help track development and help with developing motor, cognitive and sensory skills.
Today was just as perfect as it could be. I walked in not knowing what to expect.. only a few days ago I watched as Maurice had blood transfused into him.. worrying about his every breath.. and here we are 48 hours later .. requiring less respiratory support and growing strong! My boys make me so proud everyday! I’m so thankful to their nurse who helped them make a beautiful card for their daddy. She has become a dear friend to me. We still have some mountains to climb… but we are getting there. I know we will have many more good days but also some that are not so good. Sometimes, when life is bitter .. you say thank you and GROW.. and sometimes when life is so so sweet , you say thank you and CELEBRATE! Today we celebrate !

Day 31 and 32

Because of you I laugh a little harder, cry a little less and smile a lot more. Surrounded myself with these perfect little people who add such value to my life. Who challenge me everyday to be greater than I was yesterday. Who sprinkle magic into my existence, just like I do to theirs. This is my mini tribe .. this is me healing my heart.
My boys are doing as well as they could be right now. Peter gained 85 Grams and now weights 3 lbs 15 oz. Maurice gained 40 grams and weighs 2 lb 61 oz. They are tolerating feedings well ( Peter had a few formula feeds over the past two days and had no issues). They agreed to keep Maurice on donor milk for a least another week because he is “still so small” and I’m so happy about this. They are breathing ok with high flow and not having any sustained heart rate issues. They are both more alert and awake during the day. I miss them .. I can’t wait to have them in my arms again.. ❤️ but I am living two separate lives right now. When I’m with my girls I’m present 100% with them and when I’m in the NICU I’m present for my boys. Its a work in progress and the hardest thing I have ever had to do. It has made appreciate them and our time more than ever. I’m so grateful for their magic and the strength they give to me.

Day 33’

Today marked the longest I have ever been away from my babies. Two full sleeps.. checking in on them 5 times a day.. knowing they were ok.. it didn’t make it much easier. There were tears happy and sad. I woke up eager to get there. I also didn’t want to leave my girls. We have had so much fun these past few days.. the beach, the rides, movies, camp family day, even something as simple as food and mini van shopping all together made things feel “normal” again. Im trying to make up for all the time we missed and loving every second of it.
I presented Mia with her usual options.. entertainment from her auntie or nana. I said we were going to visit her boys and she could come with us if she wanted as well. Luckily, they allow kids age 4 and up in the NICU. Her eyes lit up and she quickly responded, “I want to see my babies and touch their cute little hands..” , and I immediately melted! She has been asking so many questions about them lately and already loves them so much. We look at their pictures everyday and she gushes over how “adorable” her they are. Her little lisp still comes out from time to time when she says Maurice’s name and it is so sweet.
After a morning session of dress up princess with Juliet, we packed up and went. First off to nana and papas to drop off my little Juli. She saw her nana and leaped into her arms no questions asked. She adores her. Then on our way. Mia asked so many questions in the car.. my favorite being, ” mommy how did the babies get out of your belly.” She laughed and sang. I can’t remember the last time it was just the three of us in the car together. It was a really nice feeling. Car rides were always a good excuse to pick up my phone and scan my usually social media accounts.. watching the lives of other people. I’m trying hard now to cherish times like this and be fully present. We played “I spy” and Mia showed me her new trick.. being able to more her ears! I am pretty impressed! Life happens more in these little moments.
When we got out of the car, Mia was skipping to the room. I taught her how to do a good hand wash and she counted at the scrub station to 20 with me. She wanted to wear her car dress and surprise her brothers. Of course I had a matching outfit for her and the boys, but she insisted on being a kitty cat… it’s funny how things like that don’t matter anymore. Kitty Kat won easily. She also brought her little blue dolphin toy to show them that she named Dolphie. The nurse buzzed us in.
Peter and Maurice’s room is the first door to the right. As soon as the door opened, I could see my baby. Peter was right in front of me in a big boy open crib. My baby was there, swaddled and looking like a “real newborn.” His nurse told us his heart rate was fast again last night and that he kept getting hot. She trailed the open crib and he was able to maintain his body temperature. This is a huge milestone for my little guy who now weighs 4 pounds!! Mia ran over with a big smile on her face .. telling him she was here and how much she loved him. It was a moment that will be etched in my heart forever.
Next my Maurice. He is almost the weight Peter was when he was born. He is starting to look stronger and is maintaining his airway on high flow without Cpap. The nurse said he also gained 30 grams last night and now weight 2 lbs 7 oz! I can’t wait to get them in my arms again.
It’s been about a month and James has still not held Maurice. With CPAP and his very small size , it was a challenge. Things are constantly beeping and there are wires everywhere .. he told me he was afraid he would hurt him. I completely understood and wanted him to wait until he felt ready. I think having Mia with us helped, because today was his day!
I changed into my kangaroo shirt and sat up in my mommy kangaroo chair. The nurse handed me Peter. Next she prepared Maurice and placed him gently on James’s chest. Mia glowed as she introduced herself, once again, to her baby brothers.. however this time it was not through a plastic box. She held their hands and touched their head. She said over and over how cute and sweet they are and sang them songs. She drew pictures to leave in their room so they would know she was there with them.
It was really Mia meeting her boys for the first time. The first time she saw them they were under bright blue lights wearing masks. She peaked through a glass window but could not see their faces. Today they opened their eyes and looked right at her. It was so beautiful.
NICU life means you appreciate even the smallest of victories. Being able to see their face.. to pick your baby up from an open crib or even putting on regular clothes .. all takes on a whole new meaning. I’m dreaming of having all my babies together at the same time. Peter’s nurse is hopeful that we may be able to trial a nasal canula again next week for both boys. They both have been making tremendous progress. Tomorrow morning we have blood work to check their anemia. I’m praying for some good news but even without the blood test it’s easy to see clinically they are doing very well!
It’s impossible to find a word to describe what it is like to have your oldest child meet your babies. Even if you just delivered “healthy” term babies.. there is something so magical that happens. Your oldest suddenly appears older and your heart grows even bigger. You are giving your children a best friend. My big girl telling her baby brothers how she is going to take care of them and love them forever. The bond they have from that moment on is almost tangible. I wish I could have had my Juliet with us. Mia left her pictures with her brothers and we all said our goodbyes.
She fell asleep as soon as we got into the car and I cried. Again, I’m not sure if they are happy or sad tears. The moment I leave my boys, my heart has a little piece missing. After having (almost) all of us together .. it hurt a little more. Everyday we are one step closer.
We took Mia to nana’s house and finished our night with a cooking class. It was a real date night .. just James and I .. which involved laughter, wine, great people and incredible food! The chef told stories of how important it is to appreciate life and what you have been given. He spoke to how you should not let little things bother you and always look for the positive. It was almost like he knew our story and was speaking directly to us.
I’m so thankful for these past few days. We had family time and were even able to make time for our girls individually. We also made time for a date and I even snuck in a manicure and laundry. I don’t think we will ever have the time… but rather have to learn to make it! I’m thankful for the growth and progress we have made and for this beautiful life I have been given to live. Goodnight my sweet babies.. I’ll continue to dream of the day when we can all be together.

Day 34& 35

Better or bitter

Better or bitter. Is it really that simple?
Peter’s first nurse was with us again. She is the first person to introduce me to my son and to the NICU. She shared with me her story of loss.. her journey of hurt and devastation. We all have one. They are all different but grief, the ups and downs, are all part of what makes us human. It shapes our character of who we are. She taught me the words of advice that helped her to survive her challenge.
She said, “You can choose to have your struggle make you better or bitter. “. It’s a conscious choice. What is dealt to you is out of your control, but your response to it is yours. It can make you a better person or rip you apart and turn you bitter. It is you and you alone that is responsible for that decision.
As long as you are breathing and living you will experience these ups and downs. It’s the natural path of our life. You then must choose what to do with it. Use it to raise you higher and make you stronger or have it bring you down to a dark place.
Life gives you these moments to help you grown into who you are destined to be… but you must welcome it. You must set your sail up high to the winds of grace and allow the transformation to take place. You may be bitter and angry now.. you may have every right to be.. something might have been taken from you too soon or you suffered hurt from a loved one. But how long do you want to carry that? .. how long do you want to hold on to it? Even a rose bush is covered in sharp thorns. The roses cannot exist without them. We can only truly enjoy the rose when we see the thorns.
I have seen my share of thorns. My pregnancy was filled with fear and worry and now for over a month I visit my sons in a hospital. My thorn may not be as sharp as others, but they still hurt. There were many times when I felt bitter… but I work hard to let that go and not define me. Everyday I make that choice as I set off on my hour ride to see my sons .. on the nights I cry myself to sleep missing them so much my heart feels physical pain.. I choose to see the roses as well.. and those roses will forever be more vibrant and brighter than they ever were.
I choose to be better. For my sons.. my daughters for myself. I choose to see beauty in our every milestone.. no matter how small. Things that otherwise go unnoticed are now small miracles. Peter had his first bottle today and did so well. When I first started feeding him .. his breathing slowed down. I watched on the monitor as his oxygen saturation went from 100% to 70%. His beautiful nurse remained so calm and coached me through it. I’m better for this moment.
I am better because I have more faith than ever. Faith in my intuition and in miracles. I always knew my boys would be here and now they are. Despite doctors telling me over and over again that they wouldn’t make it or even worse that we should terminate them.. I refused to listen. Instead I listened to my heart. It made me trust myself as a mother. It made me better.
I am better because I have seen such beauty in people. Doctors caring for us as though we are family. Friends and strangers offering endless compassion, encouragement and hope.
I am better because they are here. Peter weighs 4 lbs 3.2 oz and Maurice is 2.7 oz. Maurice is on high flow and Peter on nasal cannula. Peter is in an open crib maintaining his body temperature and drinking a bottle!! Maurice had a normal blood test today after his transfusion and doing well with little high flow respiratory support. He did loose 15 grams yesterday and today we are condensing his feeds to 30 min. They say some of the fat from the feeding can get stuck in the tubing. Hopefully these little changes will help.
We have come so far. Maurice and Peter needed surgery while still in the womb and were delivered months too soon. They came into this world in heart and kidney failure and we did not know if they would survive. But here we are … Peter in my arms today while I feed him a bottle .. glancing up to see my Maurice bright eyed and awake. I will continue to choose better .. it’s not that simple yet but I’m making the choice … everyday .. for us.

Day 36

Great day for the boys ( and me ☺️)
Peter gained 10 grams and weighs 4 lbs 3.4 oz
Maurice gained a little too and is 2 lbs 7.5 oz
Biggest change for the day is trialing Maurice on a little formula to help him gain weight. The calories are measured more accurately but there are always some risks. It’s harder to digest. Peter has done so well with it and I’m hopeful Maurice will have the same response.
Peter otherwise remains on a nasal cannula set at 1 liter and 21% ( 21% is the same oxygen as we breathe). It’s minimum respiratory support and the next step would be nothing at all. He’s not ready yet but getting closer everyday. He has some episodes of intermittent tachypnea ( sometimes breathing fast) so we know he still needs it. He continues to have a “soft murmur” on exam ( the nurse can hear the hole in his heart with the stethoscope ) but it is not loud and doesn’t seem to be causing problems so we are not too worried about it. His last blood test showed his wbc is 10 ( which means no infection) his hematocrit is 27 and retic count is 3.37. He is making new blood cells and his bone marrow is working but it still is not as good as it needs to be. He is a little anemic. The anemia is not causing any significant problems and we will continue to just watch and hope his numbers improve on their own without a blood transfusion. He is taking 40% of his bottle feedings ( all formula) which is pretty impressive for his first day. On rounds they even called him an “over achiever.” He continues on caffeine, iron and vitamin d supplementation. He had an eye exam which was appropriate for his age and is also being evaluated by PT/OT. He seems to be favoring his head to the right so we are working on moving it to the left so he doesn’t develop torticolis. The lump on the back of his head seems a little smaller and we are continuing to monitor it. His only issue for the day is some difficulty maintaining his body temperature. He is about 97 and needs to be 97.5 to stay in an open crib. It was very cold in the NICU this morning so I’m blaming it on environmental issues but if it does not go up soon he will have to go back into an isolette.
Maurice is on high flow 3 liters 21%. His next step would be a nasal cannula. He has intermittent tachypnea and we will not change yet because he has to use all his energy on growing. His White blood cell count is also 10 ( no infections ) and his hemoglobin 12.4 and hematocrit 34.8 with a retic of 2.37. His blood cells are higher than Peter because he had a blood transfusion of packed red blood cells. He is no longer anemic. His feeding was increased yesterday to 30 min and he is tolerating that well. The goal today is to introduce some formula ( 25% formula / 75% breast or donor milk) in hopes of better calorie control and getting him to grow a little more. We have to do with close observation and caution because formula is harder to break down and there has been a link to increased risk of NEC ( bowel infection). He is older and bigger now so the doctors feel the benefits outweigh the risks. I, of course, still cannot help but worry a little. He continues on caffeine, iron and vit d just like his brother. His eye exam was also normal for his age. He too has a murmur or hole in the heart but right now doesn’t now seem to be causing additional issues and we will continue to watch it.
Everyone always asks when do I think they will come home. Maurice still doesn’t weigh what Peter did at birth ( Peter was 1170 grams at birth and today Maurice is 1120 grams). The nurses said babies usually are at least 5 pounds when they go home. They have to be off all respiratory support ( although in rare cases babies are sent home with some). For Peter he is just one step away but Maurice still has to come off high flow and then down to nasal cannula. They also have to be able to bottle feed and have the tiny feeding tube in their stomach taken out. Right now Peter is tolerating about 40% of his feeding. This is pretty good but we still have a long way to go. They also must come off caffeine. Caffeine is a stimulant which, like our morning coffee, helps get us through the day. For preemies it mainly helps them to remember to breathe. It’s safe to say they will be there for at least 3 more weeks and Maurice will likely need more time than Peter.
We have come so far! Today we made some wonderful progress .. bottle feeding for this little guy is a big deal! I’m very proud of my boys and looking forward to having them home soon!

Blood for Peter

Peter and I are lying skin to skin. I can feel his tiny body struggling with each breath. He is using all his strength and accessory muscles to draw air into his small lungs. You can actually hear him trying to pull oxygen in. His little heart is beating much faster than it should because of all the extra work required just to sustain life. His eyes and teeny feet are swollen .. filled with fluid. He’s what the nurse call “puffy” and they tell me it’s been getting worse. His color is as white as the blanket wrapped around him. He is in distress.
I don’t need to take my eyes off of him and look at the monitor. I finally understand what the nurses and doctors have been telling me since day one.. just look at the patient.. look at your baby.. that’s how you will know if something is wrong. Well now I know. My baby is not ok. My son that I held in my arms yesterday.. only 24 hours ago drinking a bottle on his own…is now barely able to take a breath.
A very sick baby in the NICU looks different than the patient I am used to seeing as a PA. In medicine, you start to depend on numbers. If a baby has a fever or a high white blood cell count, you know something is wrong. NICU babies have such immature immune systems that many times their bodies are unable to mount these responses. You cannot “trust” the routine numbers . The signs are subtle. One marker for a sick baby is a low body temperature. I check Peter and he is cool. His temperature has been low .. yesterday and today ranging from 97 to 97.4. His breathing is fast (tachypnea). He is using extra muscles to breathe (retracting). His heart rate high (tachycardia ) . He is swollen (edema). Something is wrong and I am very scared.
His nurse is new to me. I update her on some of the progress we have made in the past few days. He has had so many positive changes. He moved to an open crib ..was taken off of high flow and started on formula and bottle feeds. All of these require him to work harder. He has to work to maintain his body temperature now that he is in an open crib. He has to work to keep his oxygen stable now that he has less pressure from the high flow. He has to work to digest and breakdown formula. He has to work to bottle feed. Could it all be too much for him? I became spoiled with so much good news forward progress. I pictured my babies home with me soon. How could this be happening today?
I go to a bad place fast… I shouldn’t and I try to stop it but I can’t help it. I immediately associate this with his change from donor milk to formula. There is a very dangerous infection called NEC that occurs more in formula fed babies. That must be it.. it is my fault.. my body couldn’t give him what he needed when I was pregnant and now during his first precious weeks of life, I again failed.. not able to produce enough breast milk to feed him. I can’t stop the tears rolling down my cheek .. landing right next to his tiny hand resting on my chest.
The doctors come in for rounds. We put him back on high flow oxygen and inside an isolette. He needs all the support we can give him right now. They stopped his caffeine because his heart rate is too high. One step forward and two steps back in full effect. They put a needle into his small heel and milk out blood to send to the lab stat. I wait, hoping we get an answer.
They reasure me it has nothing to do with the formula. The doctor is concerned about anemia. Time stands still as I wait for his blood test results. I won’t put him down. The doctor came in after what felt like an eternity. “I have good news and bad news,” she says. “ The good news is I know what is causing this..”… my heart stops and she continues.. “the bad news is that he needs a blood transfusion.” I’m almost relieved to know there is something wrong because we can do something to fix it. I know he is not behaving the way he usually does. His hemoglobin and hematocrit went from 9.6/ 27.1 to 7/22 in only a few days. This drop makes it difficult for his lungs and heart to get the oxygen they need. He does not have enough cells to carry oxygen to his tissues. His doctor also explains that this could be causing the edema or swelling. His body has less blood volume so it is holding on to fluid to make up it. He will need to get lasix today too.
Only a few weeks ago, Maurice went through something similar. He had a transfusion and within a day he stabilized. He did not have any reactions. I’m praying the same for my baby boy Peter.
I’m crying more this past week.. I’m missing them more.. my heart hurts a little more. I told James I feel like I finally have “real babies.” They have been here for a little over a month.. but the last few days they have felt so real. They are my sons. Peter looks like a newborn. Mia was only about a pound more than him when I took her home from the hospital. He is in clothes, in an actual crib, I can even hold him as he drinks a bottle and I can pick him up whenever I want. Maurice is getting bigger as well. He opens his eyes and follows my voice. They are my babies… my babies that I get to be with for only hours a day and then leave behind for someone else to take care of. I am not here to tuck them in or kiss them when they wake up. I’m not here to soothe them each time they cry. I’m not able to watch their monitors and make sure they are able to breathe. It’s no longer just ….what if something goes wrong and I’m not there. Now I’m sad because I’m also missing those precious moments when everything goes right.
Peter just started receiving his blood. The nurse put a tiny plastic tube into his vein and now he has blood transfusing into his body. I’m now holding my Maurice and my eyes are fixed on the monitor. If something is going to go wrong it usually happens during the first hour his nurse tells me. This next 60 minutes will go by very slow.
Maurice’s monitor doesn’t look to great either today. They seem to be mirroring each other. Almost like one can feel what Is happening to his brother. His heart rate has been fast from this morning. The doctors say let’s just “watch it” but now I’m becoming concerned. I sent his nurse to get the doctor. I’ll bring it up again tonight at rounds and I won’t leave until I know my babies are ok.. or at least as good as they could be.
I miss my girls and I’m torn today. It’s the NICU rollercoaster. I’m thankful to the mommy in the next room giving me a hug and being there to listen…. I know she understands and feels my pain. I’m so grateful to have my dad with me everyday.. I try to wait until he leaves the room before crying but today I can’t help it. I know it breaks his heart. I thank god for my mother and sister who tell me stay as long as I need to.. that they will take care of Mia and Juliet.
No matter how many days I’m here I will never get used to it. No mother should have to go through this.. I’m having a little pity party for myself today… the low seems much lower after being up so high. I’ll get through it. I will pray and find strength. My only peace comes from knowing we have some answers. Thank you to everyone who reads this and sends us love and prayers. I believe with all my heart it has given my boys strength. They are miracles. I know this drop will only make us appreciate so much more the next ride up to the top.

Day 38 my perfect gift

“Every good gift and every perfect gift is from above.” James 1:17
Thank you to our angels for our gifts. Peter responded well to his blood transfusion. He weighs 2050 grams but some of that is likely extra fluid. He is nice and pink and we are trialing an open crib again and hopefully he will be back on nasal cannula by late afternoon.
Maurice weighs today what Peter weighed at birth 1170 grams. He is breathing better with the little increase in high flow pressure. He has occasional tachypnea ( breathing fast) but the doctors are just watching him. He seems much more comfortable today. His blood test showed his blood cells are normal. We may do a chest X-ray later if needed but he looks so good.
Every prayer, call, text and comment helps me more than words could say. I am so humbled by the support we have received. I know my boys can feel this love. To the earth angels that continue to hold my hand through this journey .. I am forever grateful.
Today we played dress up and I even got to decorate Peter’s crib. My heart is so full… it’s a good day.

Day 38’and 39

Each morning is the same. The girls have a perfect internal alarm clock set to 6:30 am… it never fails. As the sun starts to peek into our room, they wake up.
Mia rushes into our bed and Jules is already cuddling close next to us (because she never left). We start our a.m. routine and the girls move the curtains from our window. “Mommy, are we going to see Mikey, Nickey and Leo today?” Mia always asks as she looks directly out to auntie’s house. We live across the street and have a perfect view.
Almost everyday the answer is yes. Even if it is just for a few minutes.. most days are spent with “our boys” and it gives me so much joy.
My childhood was not much different. Our grandmother and her two sisters all lived within steps of each other. Years later, their children (my father included) purchased homes on the same street. Growing up, I was always surrounded by family. My cousins were my first and very best friends.
For our children. cousin time is not only reversed for holiday parties and formal get togethers. Cousin time means much more.. it’s late night pool parties, early morning breakfasts, spur of the moment drop ins, movie nights, baking parties and the list goes on.. Our best life happens during these unplanned moments. Being with our cousins is part of our everyday .. no different than having a few more siblings.
It’s a beautiful story of two families interlaced together. Juliet and Leo will start school together in September..their first day walking in side by side. Mia is also starting a new school and her Mikey and Nicky will be there to look out for her. They go to camp as one little tribe. They will play on the same sports teams and have many of the same friends. One day, they too will start a family and I pray will choose to do it close to each other. They are brothers and sisters.. they will tease, annoy and love like no other. They will be each others biggest supporters and most genuine friends. They are creating a bond based on unconditional love .. the kind only family can give.
It means I get to have my super woman sister and family by my side.. people who love my girls like their own.. people who know how to calm a breakdown many times quicker than I can.. people who can understand and never judge.
Today we celebrated one of the 3 new babies joining our family in the next few months. The kids all wore shirts ( made by auntie of course) that read, “cousins make the best friends.” Little do they know .. as they play .. fight .. hug.. and repeat.. that they are making memories that will go far beyond these childhood years. That they are growing an unbreakable bond.
I couldn’t help but picture Maurice and Peter today.. what will it be like when they are able to run around with their cousins? It’s so hard right now.. they are here.. but at the same time they are not. James and I were able to spend quality time with our boys before celebrating the new baby on the way. Peter is almost 5 pounds 4’11 and Maurice is 2′ 12.3. They looked like such big boys.. heathy and growing. I am so excited for them to be part of these everyday moments. I am dreaming of hearing their voices team up with their cousins to bargain for an extra cookie or an extra few minutes before bedtime. It seems so far away… yet at the same time so very very close. I cannot wait for you to meet your “brothers” and all these little people who already love you so much. I missed you today and always my sons. I cannot wait to introduce you to your family .. it will forever be the greatest gift I can ever give to you.

Day 41 smiles are the best medicine

A smile is the best medicine in the world. Maurice has been tachypneaic and tachycardic again ( breathing fast and a fast heart rate). He had blood work which showed a low hematocrit (10.1/28.6). He already had a blood transfusion on July 16 and they think he needs it again. Usually babies get transfused when their hematocrit drops below 30. We were able to decrease his high flow back to 3 and it didn’t make much of a difference. After rounds we agreed to trial him off of caffeine first, but I think we are going to need the transfusion in the morning. Sleeping without him close is hard tonight. Peter tried to help out and gave me some good baby smiles. He also finished his first full bottle. I’m lying in bed and can’t stop looking at their pictures … made a little video … wait for the end .. Peter knew just what his mommy needed! When to give preterm babies a blood transfusion

Day 42-44 Peter is off of oxygen

Today I got to see my son Peter’s  face without any breathing tubes.  He has been on room air only for 24 hours and is doing such an incredible job! I can see his little lips without a tube in his mouth .. his feeding tube was moved to his nose to help him when he is drinking bottles.  It’s hard to get a good seal  around a bottle while it’s in his mouth.  It will have to stay in until he is taking 100% of his feeds by bottle.   Right now he is doing about 70% which the doctors tell me is “pretty impressive.”  He had a huge weight gain last night of 115grams and now weighs 5.13lbs.  He still has some periods of breathing fast, has some swelling and a little upper respiratory congestion but overall we are making some great progress.
My Maurice weighs a whopping 3.33lbs and gained 55 grams.  He is so alert.  I love the way he opens his eyes and looks at me.  He continues to be tachypnic (breathing fast) and he is pale.  The fellow is new to us (they rotate for about a month ) and again suggested a blood transfusion but everyone agrees he is stable enough to wait.  It’s always better to have him make the cells on his own.  A transfusion could signal his bone marrow to get lazy and not pump out red blood cells on its own.  I agree and we will wait.  We cannot decrease his breathing support yet.  On Monday he will have new blood work and can make a decision if needed at that time.  He continues to be so strong as he has been since day one.
The “wait and see” is the hardest for me, but it’s a popular theme in the NICU.  They are at a point where we have to give their bodies a chance to do things on their own.  “You don’t know until you try”.. is what they say.  You watch for episodes.. when the oxygen drops low or when they stop breathing.. the scariest part is that if their tiny body doesn’t get the oxygen it needs .. even if just for a few seconds .. their heart and brain can be injured.
They are so beautiful .. their faces filling in.. eyes brighter ..I love them .. it’s a love so so strong and being away from them is so so hard.  I miss them every minute of everyday and live in a constant state of happiness and sadness.  It’s a new feelings that I have never felt before and there is no one word that can describe it.  We would have been 36 weeks today.  Time is going so fast and still so slow 💙💙
 
 

Day 44-48

Maurice is struggling today. He is having trouble taking in enough air. His little nostrils widen with each breath. He is retracting and pulling his chest in at the ribs. He is visibly working too hard to breathe and his respiratory rate is almost double what is should be. His skin has also lost all of its nice healthy pink color.
He has been tachypneic (breathing fast) for over a week. We stopped his caffeine, tried increasing his oxygen and nothing has made a difference. Today his hematocrit and hemoglobin dropped from 28 to 24. He needs blood .. again. A blood transfusion is used to increase the number of red blood cells that carry oxygen to tissues and vital organs. His little body is working so hard to make new cells and his retic count doubled but it’s not enough. They can use blood from the same donor he had prior in order to minimize the potential complications. His bone marrow will become a little suppressed after but at this point the benefits outweigh the risks. We are all hoping this will be the boost he needs to start growing and thriving. I can’t stand to see him work so hard and it’s almost impossible to take my eyes off his monitor. He seems to be tolerating the blood… More machines.. more tubes and wires and more procedures for this strong little man. He is a champion. I just want to pick him up and hold him… It brings back so many frightening memories.
Peter is on the complete opposite end of the spectrum. He is taking 100% of his bottle feeds and today I fed him 3 full bottles. We cuddled all day long. He weighs 5.66 lbs and looks like a newborn. He seems uncomfortable and they are adjusting his iron but all his numbers look ok. They will recheck blood work on him in the am.
We spoke about Peter coming home. It’s no longer a dream.. it’s starting to become a reality. Tomorrow am.. if he continues to tolerate all his bottles.. his feeding tube will come out. For the first time he will have no tubes or wires in him. I can’t wait to see his beautiful face. He still will have to pass his car seat challenge ( be able to sit in a car seat for 1.5 hrs). We are repeating his echocardiogram of his heart and sonogram of his head July 9. If everything goes well the nurse said he may be coming home next weekend. I’m happy, sad and scared all at once.
It’s impossible not to compare when I see how much progress Peter has made. We are moving in the right direction but my heart is still broken. To take one baby home and leave another behind will be another challenge to overcome. The days are going slower .. time almost stands still. It was even harder to leave you tonight my boys.. 💙💙 one day closer

Day 49 7 weeks old

Peter’s beautiful nurse was holding him when I walked into the room… His cheeks looked a little chubbier and his feeding tube is finally out. It’s the first time I have seen my boy’s face without any wires or tubes attached to it. He doesn’t have any tape stuck to him… he’s perfection.
“You better sit down for this one”, she said.. (she was smiling so I knew it was good news).. “Peter is coming home soon. ” We spoke about it yesterday as well.. He has made such progress in the past few days. I was expecting a few more weeks and then hopefully home by the end of the month. I told her we were even planning a little trip with the girls. She laughed and said ..”No, soon like really soon.. Thursday or Friday.” My mouth dropped.. shock.. complete shock. She was surprised too. He amazed all of us when he started bottle feeding and is taking 100% after only a few days. He is ready. I went through months in my head.. little moments of our journey to get here.. how many times I could have lost my boys ..I can’t help but cry knowing what a miracle they are.
My Peter, my baby A, can it really be happening. I knew it yesterday. When I was holding him, it felt different. I felt different. I am more confident with him. I know the cry he makes when he is hungry and the way he moves when he is wet and needs a diaper change. I barely watch his monitor. He’s so very ready. I am so excited to bring you home and introduce you to your sisters and cousins. It’s another beginning for us.. my baby boy how lucky am I.
My Maurice is also doing so well today. I fed him for the first time. He only took 5cc but it was a great start. The most important thing is that he is waking up to eat and seems so much more alert and comfortable. We snuggled for most of the day. He is stronger. He continues with nasal cannula but the plan is to try without it in a few days.
Today they are 7 weeks old but in reality their little bodies still needed to grow inside. Our due date was September 6. I’m so blessed to have you with me for so long already. To the day we are all in the same place at the same time.. my heart is one day closer to being complete ❤️

Day 50-54 Peter is home

To every NICU mom..
Do not Lose hope
Always believe That there are a thousand beautiful things waiting for you
Sunshine comes to all who feel the rain.
We were always meant to share the same sky my precious baby.. you are where you belong and I thank god for you and your brother every minute of everyday… I miss you Maurice.
Always believe in miracles.

Day 55 and 56 peters first doctors visit

Maurice back on high flow

Yesterday I walked in to the NICU and as always my eyes went right for the monitors. It was so strange to see Peter’s turned around and a big open space where his crib was. Maurice’s nurse told me he was having difficulty tolerating feedings. His heart rate dropped and she had to change the rate through the feeding tube to 45 min. He was not waking up or sucking on his pacifier. He seemed “out of it.” He was also put back on oxygen because he was having episodes of low oxygen or ”destats.” I’m concenered. He has been working so hard to breathe with a respiratory rate averaging double what it should for the past month. It seems that the doctors on Saturday tried taking him off respiratory support and after only 20 min he had an episode so they had to restart. It’s not clear why they would have this trial after he was working so hard and his doctor told me Friday they would keep it on. I was told when they accessed him Saturday morning he must have “seemed ready.” Well now he’s struggling even more and is tired. We did a chest X-ray and his lung volume is decreased. I’m not sure why or exactly what this means. The answer seems to be over and over it’s just prematurity. They put him back on high flow with some pressure to help open his lungs and he seems to be doing a little better. He also had some blood work which showed no signs of anemia, infection or inflammation. In addition, he had pretty significant diaper rash on Sunday and even little spots of skin breakdown. I’m not happy. He gained 120 grams last night which is a huge gain and although it seems like a good thing I’m concerned it’s edema or swelling. We have been “just watching” his fast breathing for a month. Now he is not tolerating feeds, his heart rate dropping, oxygen dropping, and not having energy. In light of his fast breathing for a month .. I wish we would have done a chest x ray sooner and not pushed him so hard this past week. I also think he’s missing his brother Thankfully he seems more comfortable with the respiratory support. Peter, on the other hand, rocked his first doctor’s visit today. He left the NICU 4 days ago weighing 5.9lbs and he is now a whopping 5.14lbs. He is happy and healthy. We have to follow up with a few specialists ( cardiology , audiometry, opthomology, developmental dr, physical therapy) but there are no signficinat problems thank god! He is feeding and growing and changing the shape of my heart every minute of everyday. We have the owlet at home and it has given us such peace of mind. It is super easy to use and monitors his heart rate and respiratory rate. There is also an app we can log into at anytime and see how he is doing. I don’t think I would have survived without it. I own a children’s lifestyle store Miagirlxo. I can offer any mom a discount if needed( email me at miagirlxo@gmail.com for more information) I was also advised that coming next year it will be recognized as a medical device and will be available by prescription. Learn more about the owlet here. The NICU is a rollercoaster but when you have twins the ups and downs happen at the same time. It’s the hardest thing I have ever been through .. but also the most beautiful. My soul shines brighter because of you my boys. We wil all be together soon.

Hold your baby in the NICU

You have to hold your baby and don’t look at the monitors…” the nurses will tell you over and over. Sounds so simple right? Of course I want to hold my child. I travel over 3 hours to be with him. I leave my other 3 children for countless hours. How could I not want to hold my baby. This precious gift that was growing inside, that I prayed for with every piece of my soul…every minute of every day. That I almost lost so many times. Now you are here .. Right in front of me. You have spent too many days alone in an isolated room, inside of a plastic box. You don’t get to hear the sound of my voice or your sisters.. you only hear the endless drone of beeps and alarms. Now you don’t have your brother with you. For 59 long sleeps we have spent each night apart. I don’t want to look at all the wires and all the monitors around me. I don’t want to understand them. I only want to look at you… my precious baby.
You are back on the same respiratory support you needed when you were born at 790 grams almost 2 months ago. You are swollen. On Sunday your heart rate dropped while you were eating. You couldn’t maintain your oxygen. You wouldn’t even suck on a pacifier. We have graduated from Cpap twice already only to return back to it. Your lungs are now unable to hold enough air and you have decreased lung volume. The little air sacs have collapsed diffusely. They said you “pooped out and “got tired from working to hard.” Our doctor told me it was likely due to a trial you had off of respiratory support. They said you failed and now you were requiring more.
My angel Maurice, you are lying on me skin to skin, and all I can think while feeling your tiny body is why have you had to always work so hard? Why has your short life been filled with so many challenges. During our pregnancy and now.. you have had to survive so many obstacles. At only 16 weeks pregnant the doctors told me you had a severe genetic condition and that your brain was not normal. We later found it to be benign. They said you might not make it because you had an abnormal umbilical cord missing an artery. They told us it was not attached well to the placenta. That you wouldn’t grow and that likely wouldn’t survive. We didn’t give up… You had decreased amniotic fluid or Oligohydramnios and you were “shrink wrapped”in your sac. This is what happens to donor babies in TTTS. They “give” all the fluid and blood to the other twin. The stress and decreased perfusion causes the bladder to stop working and they can no longer produce urine ( amniotic fluid is made up of mostly urine). it also causes problems with lung development. You were born with heart and kidney failure and didn’t urinate for the first few days of your life. We didn’t know if you would live.. and you didn’t give up….
Now here we are.. your teeny 790 gram (1.7lb) body has grown to 2105 grams (4.10 lbs). Knowing all you have been through only makes me want to hold you more. For so long you were not safe inside my body…. all I want is to keep you safe… for my touch to help you heal.
Any mother who has had a complicated pregnancy or tramatic delivery feels this way. Your body which is meant to grow and protect your baby.. but sometimes it becomes a source of harm… and there is nothing you can do about it. The only thing that can be done is literally cutting you open and getting them out as fast as possible. There is a healing process you must go through after something like this … you have to find forgiveness … for yourself. You have to forgive your body and let go of the blame ( even though you know it’s not your fault)… letting go of that is a difficult and sensitive process.
The idea of “holding your baby” is part of the healing. Now seeing your body again as a source of comfort… it’s critical. In the NICU, they call it Kangaroo care. It’s holding your baby skin to skin. The benefits range from improving babies respiratory rate to helping you produce more breast milk. There is true medical data showing benefits of kangaroo care and it is encouraged in the NICU.
Two days ago while holding Maurice.. he turned blue. I had to hit his back repeatly .. I screamed for help.. and then he started breathing again. I was told maybe it was from the position I held him in..again I went back to that place.. when my body didn’t provide you what you needed. I’m so scared to hurt you and even more afraid to lose you.
Today I was petrified to pick you up. Besides that comforting time with me, my Maurice.. your contact with people consists only of procedures and tests. You may have a needle in your heal and someone milk out the blood for testing. Your respiratory therapist comes in a few times a day to check the machine taped to your face.. forcing pressure and water into your tiny nose. On some days they even peel the sticky tape off your face and replace it with new. The doctor comes in once a day to do an “exam” .. press on your belly.. listen to your heart and lungs. You get weighed and measured at night. Your nurse is required to check the “patient” prior to feedings, check your temperature and do a diaper change. They are paid to care for you. It is a job. But for some nurses it’s a calling… and the mothers who are lucky enough to have them… it’s a gift.
One nurse told me she likes to read what I write because it gives her some insight to what a mom is feeling. I want my nurses to know the only thing that keeps a mother sane during this nightmare is them. It is the staff and the hospital. Knowing your baby is safe when you are not there. Knowing they are kept clean and cared for. Knowing that your helpless child is receiving the best possible. It is a relationship that is based on trust.
Only when there is trust can us moms “not look at the monitors.” Only when there is trust can we reach in and pick up our tiny baby weighing less than 2 pounds with wires attached to every part of them… it is the only thing that allows you to sleep at night.. Once there is trust .. there is everything. Holding will come natural.. we may cry and still be scared .. but we can do it. Once there is trust we can believe you when you say it won’t hurt them. Once there is trust you can turn the monitor around because we know you are there watching over us. An important part of this is also knowing when to say you have made a mistake or when to ask for help.
The next time you say “hold your baby” to a mom that is scared.. look her in the eyes.. try to feel her pain and fear.. how desperately she wants to be close to her child… try to see and understand that. Don’t point out the things we are doing wrong.. instead empathize. If there are changes in the monitor come in to make sure she is not holding the position wrong. Be as competent as you can be at your job. Offer a sense of security. Never forget what this job means to the mom sitting next to the plastic box

Day 60 Maurice’s first ride

Our journey has taken a slightly different path… please continue to pray for us as we begin this chapter at a new NICU. Maurice has not sucked on a pacifier or opened his eyes for any more than a few seconds over the past few days. He wouldn’t even open his eyes during his bath yesterday morning. He struggled keeping his oxygen saturation’s above 88 and the alarms will haunt me forever. Yesterday, after our transfer, my baby was wide awake and appeared so comfortable. He is a little chubby and even starting to look like Peter. The doctor said he is presenting as a baby with “mild to moderate chronic lung disease” and only time will tell if we can get him off of respiratory support. Last night he underwent a full workup ( blood gas, chest X-ray, labs) and we will go over our plan today. Thank you to everyone who helped coordinate this transfer so quickly.
Hard to believe you have spent the first two months of your life inside a little plastic box. Mommy will always be here making sure you are safe and receiving the very best care possible. Stay strong my little miracle.

Know your NICU…

When you have a high risk pregnancy .. it’s all consuming. You have appointments at least once or twice a week and many times you wish you could just be hooked up to a monitor 24 hours a day. You don’t mind the multiple doctors visits.. you actually look forward to them.. because that is the only time you know for sure your baby is still alive. Those few brief minutes, when you can see your baby inside you and hear a heart beat.. those are the only moments you can breathe.. that’s when you could “enjoy” your pregnancy. You stop caring about getting a good picture during a sonogram appointment. Gender doesn’t matter. The first question I would always ask is “can you find a heart beat”… Fetal movement is always a good indicator of life later on in pregnancy. You know your babies are ok because you can feel them moving. When you have twins.. or any multiple pregnancy that goes out the window. “Do you feel them moving?”.. the doctor would always ask me .. honestly, I never knew what I felt. Maurice was in a sack with no fluid .. he never even measured on a growth chart.. he was always so small. My belly was shifted all to one side because of fluid overload in Peter’s amniotic sack due to Twin to Twin transfusion syndrome. I couldn’t inflate my lungs because of all the pressure. I felt kicks always by my ribs on the right, but was it one baby .. two babies.. a foot ? an arm? … I couldn’t differentiate any of it. I only knew they were still alive when I had that probe on my belly and a beating heart was on the screen. This would happen twice a week. The rest of the hours in each day I would only pray. For many other high risk mothers .. this is what pregnancy feels like. You are so focused on your doctors who are taking care of you at that moment. I had to fly out of state multiple times. You have to do anything you can to try to ensure their safety. Instead of a baby shower or planning a cute outfit to come in you are reaching out desperately to physicians and other mothers.. literally anyone who can give you information about your condition. I found tremendous support in Facebook groups and from friends who went through similar situations. It’s terrifying… you need people who understand. You know NICU life will be part of your journey …but during pregnancy all your energy is focused on delivering babies who can survive. You pray so hard for miracles. Many moms and doctors will tell you to “take a tour” of your NICU. Meet the NICU doctors and nurses.. see the facility. That’s all well and good, but how many people actually know what to expect or what questions to ask. I know I didn’t. I’m a PA and even after training and being familiar with medicine and hospitals .. I still didn’t know. I knew there were different levels and assumed all NICUs of the same level are basically created equal. I was wrong. I started this blog to help other parents going through similar situations. I was ( and at many times still am) lost but everyday I’m learning more. If there is one core message from our journey, it would be to be your own advocate. In order to do this you must learn all you can about your condition, your doctors and your NICU. It’s not fair. You should be able to sit back and just enjoy this life growing inside you but you must be strong for your baby. They are fighting so hard for you. It’s challenging to navigate through it all but please consider this as a basic guide based on my experience and if anyone has any questions I’m always here to help in any way I can. You might already be overwhelmed .. but do not leave out this important step. You are doing everything to keep your miracle babies alive and then you have to leave them … every day and every night in the hands of the caregivers at the NICU. This could be a blessing or a night mare. You should know as much about your babies doctors (neonatologists) as you do your own. The only thing that keeps you sane during this process is trust. To me.. trust comes from knowledge and building relationships. Schedule a tour.. but even more importantly know what to ask and look for during your tour. Do not assume they will tell you everything you need to know. Even NICUs of the same level can be very different. Here is a list of important things to ask your hospital. 1. Do you have one? Don’t just assume your hospital has an experienced neonatal intensive care unit for at-risk deliveries. Even babies born from healthy pregnancies may need NICU time. Know what is available to you before it is too late. 2. What level NICU: they are graded based on what capabilities they have Level 1: This is a well baby newborn nursery. Basically babies born on their due dates with no issues. They can provide standard medical care ( “late preterm babies” 35 weeks and later). Level 2: This is a special care nursery which can handle “moderate preterm babies” 32 weeks or greater. Level 2 is broken up into a and b : Level 2a cannot provide respiratory assistance Level 2b can provide respiratory assistance ( such as Cpap) Level 3: A neonatal intensive care unit (NICU) can support “very premature babies” born 27 to 30 weeks and above. They can provide respiratory support and delivery IV hydration Level 4: regional NICU : (highest level of care) A level 4 NICU can provide care to “micro preemies.” This is a term given to babies born at 22 to 26 weeks weighing less than 1 pound 13 oz ( Maurice was 1.7lbs) The biggest difference between a level 3 and 4 is the ability to provide ECMO ( extracorporeal mechanical oxygenation). It is an advanced form of life support for patients with significant heart and/or lung problems. A level 4 NICU also offers sub speciality surgeries such a heart surgery for congenital disease and may offer neurosurgery for brain issues. Click here for Top ranking hospitals for neonatal care 3. What specialisties do they have: Neurology? Cardiology? Physical therapy? Occupational Therapy? Opthomology? Pulmonary ? If your baby is born early they will require a number of specialists. My boys had eye and ear exams, physical therapy, cardiology, pulmonary, nephrology .. even a genetic specialist was consulted. If you baby is born with a congenital heart defect that needs repair, is the a cardiac surgeon available at the hospital or would you have to be transported to another hospital? There are some defects that are not picked up during pregnancy and you want to make sure if it happens you have a plan. Sick premature babies require a team. You want to know who will be a part of yours. 4. Outcomes and Statistics: How do their statics compare to the national average. What is the survival rates of babies born at 30 weeks etc. 5. How many beds do you have? And what is the nurse to patient ratio: There are 5 levels of acuity in the AAP/ ACOG guidelines. Guidelines suggest babies with more issues be cared for by more experienced nurses or those with special training . Like with any job, Registered nurses in the NICU can differ in their experience, and speciality training. Ask is there is any level of speciality training for NICU nurses treating babies who are very small or who have more significant issues. Also what is their procedures when the babies are more stable. Will they be on a 4 to 1 assignment? Meaning will the nurse caring for them also have 4 other babies to care for? In the beginning premature babies need a lot of attention. Anything more than 2 to 1 seems risky in my opinion. After they are more “stable” maybe 3 to 1? Ask! Bigger doesn’t always equal better ! Some NICS hold 60 babies .. it is going to be very different than one that has 20. Size may change the amount of attention you and your babies have. 6. How many attending do they have? Do they have a fellowship/ residentance program and how often do they rotate? Do they make independent decisions? If there is a resident working with you .. will they consult the neonatologist before making a plan? In order to be a neonatologist you must first complete medical school. Then doctors do a three year Residency in pediatric medicine. After that there is a 3 year neonatology fellowship. If you have a resident or fellow know what year they are .. a first year resident is right out of medical school. This is very different than a third year fellow. You have the right to know what level of education your practitioner has and what degree of decision making they will have. Also if there are a lot of attending you will likely not have the same doctor treating your baby during your stay. Some attending rotate every few weeks and then new ones are there on the weekends. It is very important for you to get to know you babies doctors and it is almost impossible to do when they change constantly. The more they have the more change you can expect. 7.Are there nurse practitioners or physician assistants in the team? I am a PA and I can tell you our training and experience varies dramatically. A new grad PA has likely only had a few months experience in the nicu. A PA who has been there for years will likely function almost as well as the doctor. Mid level practitioners are a wonderful thing. Just be aware of who is in your team. 8. When new equipment is received what is the training procedure: new technology is an incredible thing. There is a laser device now that can help nurses find veins. They are constantly upgrading monitors and machines. I can view Maurice on an angel monitor from home and see him in the hospital by logging into an app. Just think about your cell phone and how much that has changed. If you are a busy nurse or doctor and new equipment arrives .. you must be trained properly. This is not my opinion but rather standard of care. Typically, the staff is trained prior and must “sign off” proving they have been educated on using it. In my practice we even had a decreased patient load until we were all comfortable with any new equipment. This is very important. Machines are great but become useless and dangerous when no one knows how to use them. 9. How often do they do “rounds” and are you allowed to join in . Rounds are a time of review. Your team.. ideally everyone taking care of your child.. from nutrition, to the nurse and doctors all gather together and discuss results and progress and prepare a plan for the day. Some hospitals do this once in the morning and again at night. Some also allow parents to be a part of it. For me this is essential. I am the type of person that does well with all the information. For some, this may also be very overwhelming. I would encourage you .. no matter how difficult.. to participate in this. It all sucks …every last part of it.. but do what you can to learn and make your presence known. Try your best .. even if it is just to meet the team members. Many facilities encourage this involvement and will be patient explaining things to you. (I will add a post explaining some of the common things discussed in rounds as a guide if you think might be helpful) 10. Visiting, security and hand washing. Do you have visiting hours. Who can visit and how many at a time. If sibliglings can visit are there precautions to make sure they are not sick ? Do you check their temperature before entering. Does security make sure everyone washed their hands before entering? 11.Private rooms.. this is something I never thought about. Private rooms are very very attractive. When I first saw it.. I loved it. But what makes more sense … to have your babies alone in rooms down a long hallway or to have all the beds close by so there is always someone near in case of emergency. After experiencing an emergency.. holding my baby alone in a room and watching him turn blue in my arms.. I can assure you having babies and nurses close by makes much more sense. Also in NICU Medicine .. nurses and doctors and always talking about “knowing your baby” .. not looking at the monitors and seeing them .. how they act. If everyone is close by all the nurses pass the babies often and get a sense of who they are. If you have a baby in a private room and the nurse taking care your child also has 4 other babies all in other rooms.. there in no way for the nurse to get to know your baby. There are significant limitations. If there are no private rooms ask about protocol if a baby is sick or in isolation. 12. Do they offer classes? Some NICUs offer free Cpr classes. Do they have Support groups? Is their anything for siblings? A child life specialist? Do they offer Pictures? As silly as it may seem .. pictures were very very important to me.. exactly how they were at that moment .. the tubes.. the wires .. it honored them. Some NICUs provide this service. I was blessed to have a dear friend offer it to me and she came in and photographed us. I know it may be one of the last things on your mind. I didn’t know how many days they would be with me after they were born. For weeks.. at any moment we could have lost them. Having these photographers and being able to look at them when I was away from them.. is something I will forever cherish. 13 Breast feeding support. Is there a Lactation consult? Do they offer donor milk to mothers who cannot produce enough breast milk on their own? Can you rent a machine from the hospital? Do they provide supplies for pumping … containers for storage etc ? 14 kangaroo care: do they encourage you to hold your baby. What do they have to help. One NICU had a model doll so you can practice lifting your baby out of the isolette. Another NiCU gave out shirts to help you hold them. I love my kangaroo shirt and it changed my kangaroo experience ! I will be offering them in my store soon! 15 Continuity of care: this I would highlight and Star a million times. Will you see the same doctor, or have a main nurse… who will “know your baby??” I know you will know your child well.. the way they cry when they are wet or the way the like to lay in the isolette.. even the color of their skin or if they are “puffy” another word used often to describe swelling or edema. I cannot tell you how many times I heard .. well, “your baby is new to me so I can’t tell if he’s “puffy”… or “I can’t judge if he’s sleepy”.. he just seems tired … how could you?? How could a nurse know your baby ..Or a doctor know if they keep changing .. week after week.. day after day.. meeting new people.. them “just watching”.. It is obvously impossible for the same doctor to treat you 24 hours a day. What is done to ensure all doctors are “ on the sameness page”? Do they meet to discuss the babies each week? My hospital now has all attendings meet once a week to discuss each child to ensure some continuity. There are a few different ways to get from a to b and you want to make sure everyone who will be treating your baby is aware of the plan and agrees. You never want to hear “I don’t know why that doctor would do that” or even worse no one knowing what a doctor because “ the doctor is on vacation and it is not documented correctly.” Documentation is essential. Also when caregivers keep changing .. all issues must be clearly defined. For example , if your child is having episodes which means they stop breathing.. it must be defined as “it is this many seconds and heart rate and breathing did this..”. Words like a little or a lot.. up and down…or seems to be ok… these are opinions and have no place in medicine especially when there is no continuity. Make sure whoever is treating your baby knows your child and uses clearly defined numbers and medical terms when describing their behavior. If you are in rounds and you hear these words.. ask for numbers… “Watching NICU babies” is another common theme and again make sure it is defined. You also want to ensure all practitioners follow the same guildlines. Policies and procedures within an institution should not differ and all physicians are mandated to follow them. For example if your baby received a blood transfusion.. what protocol is followed ..Do you full feed , trophic feed, no feed… many topics in medicine are very debatable and you want to ensure your facility is up on the latest research and that the doctors follow the protocols in place. 13 Mistakes: no one is perfect. This is true for nurses, doctors, Mother’s all of us.. things happen.. if something does not seem right.. question it!!!! It is again difficult to navigate through all the people.. but you can always ask to speak to a charge nurse.. or doctor or the director of the nicu if needed. Find out how they will handle it. It is very unfortunate .. but you must be your child’s advocate. In medicine there is a standard of care that MUST be followed. Issues such as documentation, following hospital protocols and competency of staff in using equipment as well as responding to emergencies are necessities. You have rights as a patient and if you are not satisfied with the level of care you are receiving.. you can leave!! I know I am likely leaving out some things but please please comment if there is anything special about your NICU or any advice you could give other mothers. I can only pray our experience helps someone

else. Us mamas have to stick together!

Day 70 10 weeks

There will be a time for everyone when you will go through some type of trauma… some life event where your whole world is torn upside down. We are human .. it is inevitable. For me.. it is happening now… it has been a combination of joy and sorrow.. beauty and pain. The rollercoaster … Having Peter home and experiencing the gift of him with us has been such a blessing, yet at the same time reminds me how much I miss my Maurice. Leaving him in the NICU, alone without his brother, without me .. it is heartbreaking. My baby boy is in a new hospital. I don’t know the doctors or nurses very well. His blood pressure is high.. we are working him up for pulmonary hypertension. Tomorrow we check his kidneys and the pressures inside his heart. The doctors are trying to figure out why he is breathing so fast.. it is interfering with his eating because he can aspirate. Most of his food is still through a feeding tube. Im so happy they are checking everything but I am still so afraid. I’m trying my absolute best to be there for him and my other three babies at home. I cannot be all I have to be for anyone right now… including myself… it is impossible to be the perfect mother, wife, friend, daughter or anything at this moment.
The pieces of me are held together by those who continue to hold space for me. It’s a concept we use often when practicing yoga. It is something I did when working in psychiatry and I do with those I love. It is just being present. It is not “bothering” someone you love when you tell them you are there.. just there to offer space.. offer your love or attention. It is those who walk along side me.. those who continue to offer unconditional love and support without trying to fix or change the outcome of my problems. People who have gone through situations far worse and yet still take the time to comfort me.. they are my angels.. It is those who make me feel safe and comfortable in my decisions.. and allow me to trust my intuition. It is the people who have been there for months .. who lend me courage and strength by creating a safe environment and allowing me to feel whatever it is that comes up at that moment in time.
For months, my father has come to hospital with me. It started with my ultrasound appointments. I could not drive.. my mom would watch the girls .. and my husband would have to go to work. My dad will sit with me.. he listens when I cry.. he offers reassurance but truly allows me to feel whatever I have to .. if it is happy or sad.. he is just there for me… and when it gets to be too much .. he will wait outside for a few minutes. He will not let me see how hard it is for him…it is overwhelming .. he has seem me hurt so much .. and although I know it destroys him.. how difficult it must be to see his grandchildren or his daughter suffer.. he would never show it or make it about him. He has been a constant strength for me.. an example on how a parent should be for their child. It makes me better for my babies.. he would even visit the boys for me on days I couldn’t be there. I truly adore him and admire so much the man that he is.
There is never a “right thing” to say when someone you love or care about is suffering.. so many times you get caught up in these words … words that have no real meaning.. People will always tell me I don’t know what to say.. and that is ok! …true comfort comes from simply holding space. The practice of letting someone know you are present requires humility and you must be genuine. It means letting go of all your ego and understanding it’s not about you. Offering your attention.. not interrupting or working on your comment and response.. not asking a hundred questions… it is just listening… it is a very hard skill to master. It takes practice. The ego tries to sneak back in and find opportunities to subtly make things about you and not the other person. You have to be willing to allow the other person to feel why they want to feel. It is not your job to be a cheerleader or to somehow make all the pain go away. If you are holding space you need to practice acceptance…. not try to immediately change things. Your opinions are irrelevant when you are being present. Unless you have gone through the exact same situation .. you can never truly understand the feelings. Just being present is enough. Be compassionate. When someone listens .. without judgement or ego.. with full presence .. it is an act of compassion in itself. You don’t have to even say the words .. ” what can I do ..”. You are already doing it. An attentive loving presence in itself can relieve so much pain.
We are human.. we will all suffer at one time or another. It is so difficult to witness the ones you love hurt. You want to fix it.. you relate it to something you can understand.. you try anything to make the other person feel better using all your learned phrases “it will be ok”. ” “be positive”…. it’s not about empathy or trying to understand the situation .. you don’t have to put yourself in their shoes.. it’s just about presence and awareness. Pain is lonely. It is isolating. When someone holds space for you.. even though no real problem may be solved .. you still feel better.. you feel less alone.. you feel loved.. it is a spiritual connection for both people.. it is very safe.. very beautiful and it is an act of pure love.
It is a skill like any other. Most people get so caught up in “not knowing what to say” so they say nothing. .. so wrapped up in ego… Healers practice this daily.. others only understand it when they are suffering and need it. I have seen the best and worst in people .. from doctors to friends and strangers..
It’s not easy to know how to behave around someone who is going through a loss or true emotional distress. I know that I am the person who wants to fix everything for everyone. I have such a hard time seeing people I love hurt. But when someone you love is grieving .. I can assure you the best thing to do is not to try to fix it.. the best thing you could do is be present…even if just for a moment.. allowing someone to feel and to offer a safe nonjudgemental space free of your ego.. it offers pure love and healing. To the many angels I have had do this for me .. to those who have given me this gift.. it is something you can feel…. please know you are my glue.. the glue that holds me together each day as I try so hard to make it through in one piece… the natural healers that give me so much strength. I love you.

Day 72

Cuddling with my boy .. “kangarooing” they call it.. just lying skin to skin .. him tucked into my shirt. I can feel his little chest rise and fall faster than it should.. but the more we lay together the slower it gets. He is more relaxed when I am with him. I wish I could stay here forever. Its just us.. the nurse closed the curtain and the lights so we could have this time.. I missed him. I’m playing the NICU playlist I made at the advice of other moms from the hundreds of other pages on nicu advice I’ve read. The songs make me cry but bring comfort too.
Our doctor just left the room. We had some changes these past few days. Maurice has not progressed as quickly as we hoped. They have given his condition a name and treatment. We use words like chronic lung disease and no real “cure.” It’s terrifying but given what he has gone through .. how many doctors told me he would never get to this point.. the fact that he wasn’t even meant to be born yet.. or how he survived after full kidney and heart failure during his first week of life.. we are just so lucky he is here and has been so strong.
He is struggling to control his respiratory rate. He is intermittently tachypnic. It basically means he breathes very fast at times. He also is not able to “nipple” all of his food and still requires most of it to be given through the feeding tube. The two are closely related because if he is not able to catch his breath he can’t suck on a bottle. He can aspirate if his respiratory rate is too high. Over the past few weeks his blood pressure has also become problematic. It is too high. We checked everything .. his heart function including the structure and function.. the pressures inside of his heart.. multiple chest X-rays looking at his lungs.. countless blood tests for infections .. his last blood transfusion didn’t seem to help much either. He is being followed by cardiology as well as pulmonary.
He has been diagnosed with bronchopulmonary dysplasia or BPD. It is also known as chronic lung disease. Babies are not born with this. It develops when premature babies born with respiratory distress syndrome need help to breathe for an extended period of time. The forced pressure can cause scaring and inflammation. The inflammation causes excess fluid to build up. The increase in fluid changes the compliance in the lungs making it harder for them to “squeeze” the air out. Babies born at less than 1000 grams are at risk the most. Maurice was born at 780 grams. Respiratory distress syndrome is a very common problem in preemies and almost half of the babies born this small will developed it. It is called BPD when they continue to require oxygen and show signs of respiratory problems after 28 days of age or 36 weeks post conceptional age. Maurice is now 39 weeks and he is still having difficulty controlling his respiratory rate and keeping up his oxygen levels on his own.
BPD is one of the problems that come with with being a preemie. It happens to about 40% of extremely low birth weight preemies. People will always ask me if it is just a “regular preemie thing” and as far as RDS and BPD it typically is. But Maurice also has a number of other issues because of twin to twin transfusion syndrome. It is not only the “regular preemie things.”
There are other factors that contribute to the disruption of lung development .. particularly alveolar growth. Having growth restriction and a lack of nutrition can cause it. He had selective interuterine growth restriction or SIUGR which in itself is a two fold risk of developing BPD. He was also the donor twin giving all the nutrition to his brother through connecting vessels in the placenta. His umbilical cord also only had 2 vessels ( it should have 3 ) and was hanging off the placenta ..he wasn’t getting all the nutrients he needed.
My son also has lung disease secondary to having no fluid in utero. Pulmonary hypoplasia is a condition that develops in babies who have severe oligohydramnios ( low amniotic fluid). This condition affects donor babies in twin to twin transfusion syndrome. While in utero connecting blood vessels causes the donor twin to give all the blood and fluid to the recipient. In doing this the kidneys become so stressed that they are not able to work and no longer produce urine ( which makes up the majority of amniotic fluid.). The decreased fluid causes the pressures inside to be much less than normal. These babies also have increased spinal flexion causing compression of the abdominal contents .. elevation of the diaphragm and lung compression. Everything is squished together and the lungs cannot expand like they should. They can’t grow properly.
Basically his lungs didn’t develop properly because of twin to twin transfusion.. he had no fluid and was squished.. there was so space for them to grow.. also he didn’t get the nutrition he needed because he was giving everything to his brother. This led to pulmonary hypoplasia (hypoplasia is poor growth ). Add to it the scarring and inflammation from all the pressure and mechanical ventilation pushing oxygen into his tiny sensitive lungs … The cells grow abnormally and he developed bronchopulmonary dysplasia. ( dysplasia is abnormal growth)
So what does all this mean.. you have a tiny baby who breathes at a rate of about double what he should.. just trying to push air through weak damaged aveoli. His lungs have poor compliance or elasticity. The chronic inflammation leads to excess fluid build up making it even harder. The doctor explained it to me like having a sponge .. it’s much harder to squeeze out a sponge soaked with water. It is easier to squeeze it when it has only a little dampness to it.’ Right now the inflammatory process is making his lungs like a heavily soaked sponge.
We will try to fix it with diuretics. Diuretics help the body get rid of excess fluid. He is on medication now three times a day.. spironolactone and hydrochlorothiazide. Studies show it helps to improve lung function in babies with chronic lung disease. I didn’t understand why we needed a continuous regime and couldn’t just give a single dose of lasix but after the doctor explained the disease process and the issue of inflammation it makes sense. This condition is chronic and a single dose of lasix although would likely help for a few hours will do nothing long term. I’m still concerned about his blood pressure and by decreasing the volume it should get better. It will take about 72 hours to see the full effect of the medication. He will likely be on this for some time. We are also anticipating he will need to go home on oxygen. I’m praying the medications make him more comfortable so he is able to eat and doesn’t need to go home a feeding tube too.
In addition to some pulmonary issues he has an inguinal hernia but the surgeon and his team saw him today and said they didn’t think it requires surgery right now. Thank god.
It is almost time to feed him again.. he has had 2 full bottles in 24 hours which is a huge improvement. I don’t want to push him because his blood pressure is still High. He will get better hopefully with these medications and good nutrition. Everyone always stressed that growing is the main thing that will help him. He is 2550 grams today and has made such incredible progress.
Today I realized something… there really is no “fixing” this.. we are past the point where a dose of a miracle pill will make him all better.. there is no single thing that will cure this. It’s chronic meaning it will always be there. We can help it but not make it go away. I hope one day stem cells will be the cure. Hopefully by the time you read this my Maurice there will be more.. but for now.. we just try to give you support. I write these posts in detail to try to explain what is going on to my family and friends. It is also helps me understand it myself. I hope if there is a mom going through something similar it can help her understand. It’s so hard to navigate through all the medicine when you are heartbroken and scared. His lung disease will never be cured. He will have some element of asthma and we don’t know for sure how long he will require oxygen.
But he is perfect. He is as perfect as perfect could ever be. You will be able to do it all my love .. this will never define you.. any of this.. you are so strong .. you are so brave and you will overcome it all as you have since day one. You inspire me … you make me better .. and I love you .

39 weeks and 6 days

Tonight I am not sleeping .. it’s not just because we are excited about the first day of school for Mia and Juliet. Tomorrow morning Jules goes to school for the first time and Mia has her first real day .. I am thrilled for them and cant help but tear up thinking of how big they are getting. But it’s not just excitement keeping me awake… I’m also scared. I’m scared because Peter and Maurice had to start their vaccines and had his first round of shots. There is no question that preterm infants are at a higher risk of death and sickness from vaccine preventable diseases. As a practitioner I know this and can understand the importance. The current guidelines recommend to vaccinate according to chronological age, regardless of current weight or birth weight. They do not take into account gestational age. What this means is that although the boys were born about 3 months early, weighed 3 pounds combined and technically should not even be here yet.. the guidelines say vaccinate them the same way you would a healthy term newborn baby. I am having so much trouble wrapping my head around it. The doctors enforce it and I get it but I’m scared. I’m terrified because premature babies especially those born at a very low birth weight >1000 grams have episodes of apnea after them. Up to 30% of babies have cardiopulmonary events well documented in studies after receiving these immunizations. That means about 3 out of every 10 premature stable babies will have an episode where they stop breathing within 72 hours of getting the vaccines. The two month schedule recommended for Peter and Maurice and all babies regardless of size or age consists of : Hepatitis B ( which is usually given at birth and then again at 2 months of age) DTa P : Diphtheria ( a serious throat infection that can block the airway) , tetanus ( a nerve disease that caused by a toxin producing bacteria contaminating a wound) and acellular pertussis (whooping cough) Hib : Haemophilus influenzae type B ( this bacteria was the leading cause of meningitis in children under 5 before the vaccine ) the Hib vaccine also protects from pneumonia and pericarditis which is an infection around the heart IPV: inactivated polio virus ( polio is a viral infection that can cause permanent paralysis) PCV: Pneumococcal conjugate ( protects against pneumonia, blood infections and bacterial meningitis ) RV: Rotavirus ( a gastrointestinal virus that causes diarrhea and can lead to dehydration) And just when you think you had it all get ready because at 4 months it’s time to do most of these all over again There has been a huge effort to keep premature infants on the “schedule” and have their vaccines completed at the same time as a healthy term baby. It is understandable as many of these diseases cause significant illness in premature babies and can even lead to death. They are at a much greater risk, however there issues that arise. These issues are not my opinions but rather ones present in the current studies. 1. The hepatitis B vaccine is recommended at birth and then again at 2 months of age. Many studies are now showing that in premature babies who have low birth weight also have immature immune systems and are not able to mount an appropriate immune response. It is suggested that as long as the mother does not have hep b virus in her blood you can delay it for babies who weigh less than 2000 grams at birth ( 4 lbs 7 oz) Hep B is transmitted through blood , semen or other bodily fluids. It can transmitted by IV drug use. If you are at risk make sure you are tested to ensure you will not pass it to your baby. If your baby is less than 2000 grams you may want to talk to your doctor about delaying the immunization of Hepatitis B until you are out of the NICU. Studies support that choice. 2. Pediatrix is the brand name of a popular vaccine made by GlaxoSmithKline. It is a convenient 5 in one vaccine and seems to be a fan favorite with the NICUs and pediatricians. It consists of DTaP- polio- and Hib: sounds so great ” save your baby the extra stick” we can do them all at once they say.. well this does not seem to be very well studied in babies with very low birth weight or those who are very premature. Surprisingly, this is the only way to vaccinate pertussis in the two NICUs we have been to…In combination with 4 other vaccines all at the same time. We “don’t separate them” and “we usually do all the two month vaccines over 1-2 days” At 2 months Maurice was still having episodes but even still I was told you should do it.. you have to do it .. to “keep the schedule.” It’s ok if they “have an episode” don’t want to eat or get a fever because … it’s “normal.” There is nothing normal about a 4 pound baby becoming apenic or not breathing. According to the latest study “13-30% of medically stable premature infants develop apnea” after .. the GSKs combination vaccine of HIB, polio and DTP. The conclusion is that it has a “clinically accepted safety profile when used in infants with prematurity. It’s nice to know that a rate of up to a 30% of babies that stop breathing after given one dose is clinically accepted. It also continues to say that “additional studies are needed in very premature and very low birth weight infants.” That is what Maurice is or any baby less than 1000 grams and Peter was not too far behind at 1170. You can read more about it in the 2018 study here ->https://www.ncbi.nlm.nih.gov/m/pubmed/29336924/?i=4&from=vaccine%20schedule%20premature Straight from GSK safety page on Pediatrix they state that “in clinical trials was associated with higher rates of fever relative to separate administered vaccines” and “apnea following intramuscular injection has been observed in some infants born prematurely.” Again right from the package insert there ” were 5 deaths among 8,088 recipients and 1 death reported among 2,287 recipients in comparator vaccines .. cause of death was 2 cases of SIDS or sudden infant death syndrome, convulsive disorder, sepsis and neuroblastoma. There was one episode of SIDS in comparable vaccine. ” they continue to say that “by chance alone some cases of SIDS can be expected to follow recipient of pertussis – containing vaccines. There is also a nice added bonus “pediatrix has not been evaluated for carcinogenic or mutational potential or for impairment on fertility.” There is more data in the handout comparing the rate of seizure in dtap alone vs pediatrix and it is similar. It’s made with formadehylde and aluminum but have no fear because it also says it’s free of preservatives. Read and enjoy. https://www.gsksource.com/pharma/content/dam/GlaxoSmithKline/US/en/Prescribing_Information/Pediarix/pdf/PEDIARIX.PDF The National Vaccine Injury Compensation Program (NVICP) .. yes such a thing exists .. a program dedicated to awarding compensation to people after injury from vaccines .. has awarded many people compensation after the pertussis vaccine. Claims asserted that pertussis vaccine causes 333 seizures and 189 were awarded compensation .. anaphylaxis 7 claims 6 awards.. hypotonic/hypo responsive injuries leading to early death 107 reported and 73 awarded and long term neurological disease 51 claims 18 awards https://www.ncbi.nlm.nih.gov/m/pubmed/9635377/?i=31&from=pertussis%20vaccine%20and%20sids Pertussis can be very dangerous for babies born prematurely. It is a disease that is still prevalent and presents a real risk. My babies are so small .. their lungs and immune system still not developed. I know I have to immunize them .. I want to protect them in any way I can. .. but I also want keep them safe from the dangerous side effects of these vaccines.. especially given the medical data that clearly states the combination Pediatrix is not yet well studies in premature babies . Right now this is the best I have … this is the only way I can give my baby protection against pertussis. We already passed the 2 month mark so we are on a delayed schedule but I had to wait until Maurice was no longer having episodes. I couldn’t bring myself to start vaccines on a 4 pound baby who would stop breathing at night. I saw him today.. he looks so much better so much stronger.. we are almost “term.” I know it is safer for him to get these while he is in the hospital .. being monitored closely .. I put off as much as I could but now he is doing a little better and to me the safest option I have to is start his immunizations in the NICU I did the same for Peter today. I won’t take my eyes off him. The owlette sock is wrapped tight around his ankle. I have lying on my chest. He is having a very bad night ..I’m worried about my Maurice and wish I could be with him but at least he has care if he needs it. It is so much safer for him. I know people have very strong opinions on vaccinations. When you add to it a baby born three months too soon you have a whole new set of issues. Not only in the safety profile of the available vaccines but also in the efficacy of them. Talk to your doctor. Base your opinions on facts and not just what you hear celebrities say. Try to find a doctor that will listen to you, respect you and educate you. Respect them as well. Today my doctor said “it’s like a Chinese menu” when you start doing that. “One from a and one from b.” I laughed because it really is.. you start to bargain. Know what vaccines your baby is getting. Know what your options are and what you are comfortable with .. delayed schedule or separating vaccines.. but do it based on facts and consider an order of “importance.” The NICU nightmare continues but thank god my baby boy is doing better and will hopefully be home soon. He was taking a few bottles and I am hoping the vaccines don’t set him back. He is growing so strong and weighs 5.11lbs and Peter is now 7.9 pounds. We have so many schedules to stick too and it is so not my strongest skill. I’m happy the girls will be out and socializing .. making new friends and learning new things.. but nervous about this added responsibility of getting to places “on time” when I have one baby home and one baby still in the hospital. I have been blessed with a wonderful support system and incredible family and friends who have all offered so much help. I’m trying to keep focusing on the now and keep going day by day.. these beautiful faces make it so much easier to do!! Wishing all the babies out there a wonderful new school year and lots of love xoxo and to all the mommies .. packing lunches and doing homework .. the days go by so slow but the years so very fast .. enjoy the craziness and take the time to appreciate your perfect healthy babies.. try to take in these precious moments .. its easy to loose site of what is important when you are running always so fast ..

Day 79 our due date

am a very spiritual person. I am always looking for answers .. the how’s and why’s of our life’s circumstances. I have read a few books that explore the theory of a pre-birth plan. They say before you are born on earth, you and your angels or spirit guides select the life experience you will have here. You select your parents, your relationships, the goals you wish to achieve and even the challenges you have to overcome. Where you are born and the financial status of your family.. your siblings and your close friends.. it’s all part of this plan. When you meet someone and feel so comfortable right away it’s because they were meant to be there. Everyone and everything is predetermined to some extent to teach you something. But there is also free will. You may choose to learn selflessness or compassion and be born in a situation that may be very hard but will teach you these virtues. Our life here is temporary and your goal is always growth.
To justify sadness or the suffering that comes with so many challenges, for any human, is difficult for me to accept. People always say “God gives you what you can handle” or “It’s meant to be”.. I cannot believe some tragedies are ever just meant to be. No innocent person ever deserves to hurt so badly. But I remembered reading this after becoming pregnant with the boys. I consciously planned so much of my life..or at least I thought I did. And then came my boys, the gift I never knew I needed.
I had two beautiful pregnancies and deliveries. I am very lucky .. very very luck I was ever able to experience that. After going through the past few months I appreciate it even more. For Mia.. I wanted so desperately to get pregnant. I dreamed of her.. Something just changed in me and I knew it was time for me to be a mother. I really didn’t care about anything else.. call it whatever you want.. my maternal instinct .. my biological clock.. it turned on like a switch and it became all I could think about. It took me a while to be ready .. I never really played with dolls or envisioned the white picked fence…. I was a “late bloomer” in terms of my motherly instincts but when it kicked in .. it was all consuming. We were living in a beautiful high rise with a view of manhattan in Jersey City. We would eat dinner at Sushi Samba a few times a week just because. I worked on Park Ave practicing Anti Aging medicine. We were making good money .. spending good money .. traveling and partying. It was fun.. very fun. But I started to feel a deep emptiness. I wanted a baby.
We quit our jobs… both of us. My husband was diagnosed with Multiple Sclerosis a year after we started dating and his job at the time was too much stress on him. We moved in with his mother, I found a new Physician Assistant gig and he began the process of starting a new career as a financial advisor. We were planning for a baby. I got pregnant very quickly… Had an easy pregnancy and blissful delivery. I pushed once and there she was. Healthy .. beautiful .. and so incredibly prefect. I held her in my arms and immediately fell in love. She didn’t leave my side in the hospital. I had our matching outfits all ready. My bag packed with headbands and all her little outfits. I was able to get up and walk around .. I was uncomfortable .. I couldn’t even describe it as real pain. And within a days, I felt almost back to normal. It was the greatest experience of my life. I moved in with my mother right after. My grandmother lived downstairs at the time and was with us everyday. She would just sit and hold Mia for hours. My mother and father catered to me like a princess. We found our dream house across the street from my sister and after Mia was about 2 months old we moved in.
My plan was to have two babies before I turned 35. I wanted Mia to have a sister and always wanted them to be fairly close in age .. like my sister and I. She is my best friend, my heart and I knew it would be the greatest gift I could give Mia. We started trying again, in line with our “plan.” Luckily this time was also fairly easy and we quickly found out it was another baby girl. My heart was so full. Things went well until she turned breech halfway through the pregnancy. I was determined not to have a C-section. I did everything possible to have her move back into position.. I stood on my head .. literally ..to make it happen. I practiced my yoga and saw a chiropractor Dr. Jennifer Falcone who performed the Webster technique a few times a week. The doctors didn’t think it would work but it did. C-section canceled!! I felt like superwoman. I went into labor and anticipated a nice easy delivery. Right before we started pushing the doctor checked and she turned again.. she was coming out shoulder first. She was in danger. The doctor told me we would need to go into the operating room immediately to get her out safely. I cried and she held me and looked in my eyes .. she promised me she would be ok. I believed her. It was the first time I ever felt real fear. The thought of something happening was crippling. I was rushed into the operating room. They started cutting me .. I just prayed and held James’s hand as hard as I could… pressure tons of pressure.. and they couldn’t get her out. The doctor had to do a classical c section .. a vertical cut that allows a larger space for the baby to be delivered. It is reserved for cases of extreme emergencies. I just laid behind the curtain waiting and then finally I heard her cry. It was the most beautiful sound I ever heard. I was able to look at her and kiss her .. zoning in and out of it from all the drugs. They took her away from me before I could hold her. It took a few hours until I would have her in my arms and then she never left. She was where she needed to be … where I needed her to be. My perfect beautiful baby girl.
It was all what I dreamed of … what I had prayed for. It all happened just as I planned. My two precious baby girls, 2 years apart.. and right before I turned 35. I had Juliet in February and turned 35 two months later in April. We found a beautiful home right across the street from my sister. My daughters are healthy, my pregnancies were relatively easy and my deliveries, although very scary with Juliet, now seem like a breeze. It was our plan .. which we were blessed to have come to life. We choose them .. the timing .. all of it.
And then the boys … The boys are very different. They choose us. I know they did. I knew it from the moment I saw the two tiny little dots on the sonogram machine. My heart felt complete. I didn’t know how much I needed them. There was no plan.. no counting ovulation days… I couldn’t understand people having more than two kids. You seem so out numbered. I am always in awe of my family and friends with three, four, five or even six kids!! I can’t count the number of times I asked my sister what it was like when she had her third Leo. She makes it look so easy .. so seamless. But I was good. I was really ok. We were getting to the point where I no longer needed my diaper bag. I could throw a juice box and diaper in a bag and go. The classical c section took almost a year to recover from. I felt like myself again.. I even lost the baby weight.
We found out we were pregnant with twin boys right before my father in law past away. He was very sick with a rare form of Non-Hodgkins lymphoma that he fought very hard. I can still remember one of the last conversations my husband had with him. He, like everyone else, was in absolute shock that we were having twins. James and I with four kids, it was as crazy as hearing we hit the lottery. “Twins James .. really?! My father in law Peter said with a very perplexed look on his face. “It’s the best thing that could ever have happened to us” my husband said. I couldn’t believe it. I couldn’t believe how happy James was. We never talked about more kids.. he never really cared if he had a boy or girl.. he was just happy we had healthy babies. I was so scared but James never was. He was so excited. Our due date was September 6. My sister in law also found out she was pregnant with a boy and due September 11 on My father in laws birthday. He sadly died only a few weeks after we both found out we were having babies. I believe the three boys coming into our family around his birthday was a gift he left us. Maybe part of some “plan” to help take away a little of the pain of such a great loss. Maybe a little distraction to help distract from the grief.
And then to hear my boys might not make it .. that we might lose them again and again in utero… I refused to believe it. So early on we were told to terminate and I refused.. they were starting to make me believe the boys were sick .. I could not accept that these boys were given to us only to be taken away. Now, when I think of what we have been through and how far we have come.. how much they have changed me .. changed my soul.. the suffering the pain the love and beauty.. it has made me so much better. It has given me, not only the gifts of my boys, but the incredible gift of love and the ability to see so much beauty. Love that I can feel so deeply, an appreciation for the littlest of things.. a love and respect for my family that is indescribable. The growth my soul has had during this incredible ride is tremendous.
The broken will always be able to love harder than most…
Once you’ve been in the dark
You appreciate everything that shines.
Is it all part of some predetermined destiny…. I don’t know.. it’s a lot for even me to take in… but I know my heart has never shined so bright. I know my babies, all four of them, were meant to be mine… I know my family is so strong.. my mom and dad.. my sister ..they teach me more everyday.. about what the word family really means. My husband .. I have never loved him more.. I appreciate him in ways that I would have never appreciated him for before.. I believe he saved my life the night after the laser surgery .. when I was in pulmonary edema and couldn’t breathe. He supported every decision I made when it came to saving our boys .. he is my soul mate and support during this .. even after he had suffered such a great loss himself, the passing of his dad, made me love him even more. It’s an appreciation for everything. The dark we saw was so so dark.. there was really no hope .. and now when I think of that date.. our due date.. to know we have already had 80 days with our strong incredible baby boys.. to remember the angels we had along the way especially Dr Ruben Quintero (the man who proved to us our babies were healthy and saved them with the laser and surgery he created.. the man who treated me with love and compassion.. the doctor who is an angel for so many mothers), the stranger that sent me his cell number on a Sunday night when I pleaded for help, my strong beautiful friend, who despite her tragic loss of her son to TTTS still took the time everyday to educate and comfort me, Dr Alverez Perez and Dr Al Khan for helping me bring them into this world safely, and so many others.. even the random ICU doctor who sat next to us on our terrifying plane ride home from Florida after my stay in the intensive care unit.. so many “coincidences ” … we have had so many angels looking out for us along this journey. I want to thank everyone who has helped us.. in any way.. even just a message or text.. with all our heart thank you.. the words don’t seem great enough anymore. I pray that maybe knowing about my boys and of me may one day be needed in someone else’s plan and I will be there to help them. My boys are miracles and it is me who is so very blessed to be their mommy. My shape of my heart is molded now in ways words could never describe. I have been in the dark and I will forever appreciate everything that shines.
Mia Juliet Peter and Maurice 💙 God knew my heart needed you 💖 I love you

Day 82 bottle feeding with auntie

After a few days of struggling with bottle feeding again , my little man finished a whole bottle tonight! He weighs 6.1 lbs and even has a few rolls. We have had some things come up on this last blood test.. his white cell count dropped and hemoglobin is down again too from 27 to 26.) His Retic count also decreased from 3 to 2. The organic amino acid urine test is still abnormal. The doctor just wants to watch all of this and doesn’t think it is a reason to be too concerned right now. Decreasing white blood cells can be a sign of infection and if the hematocrit continues to decrease he may need another blood transfusion. I’m concerned..but the doctor is reassuring. He continues to be intermittently tachypnic. The physical therapist also noted some increased tone in his lower extremities and recommend PT or therapy twice a day. There are some very scary neurological issues that can cause increased tone but they are saying it could also be just prematurity so I’m trying to focus on that. We have a lot to follow up on. I just keep praying.
I love being with him at night.. cleaning him.. changing his sheets .. tucking him in ….. and I get to spend the day with my other babies.. but the problem is when I come so late I don’t get to see the doctors. They called me to update but I like to meet them face to face to discuss my concerns. But tonight was special .. my sister was with me and my boy stayed awake longer than he has in a few days. I’m just so proud of him. I’ll make sure I’m there to get more information in the morning

Day 83 your temporary home

It’s a strange feeling .. being in the NICU ..there is something so beautiful about it.. so peaceful and healing.. I hold my son .. skin to skin. It’s just us alone.. I play soft music to him to try and drain out the sounds of the endless beeps and alarms. I can feel his tiny chest rise and fall against mine… he can feel my heart beat. You look around and see so much love. You see other mothers… broken in the same places.. doing the same thing. After hours of torture apart.. you are together again.
When your baby weighs 790 grams or 1 lb 7 oz and is a “micro preemie” as they call it.. it’s much easier. Everything in the NICU is essential for their survival. They live in a temperature controlled box .. covered in more wired and tubes than you can count. Things in and out everywhere.. you know you cannot take care of that baby. You love your baby.. but you are scared to even touch him. It’s a justified fear.. if you pick up a baby with an arterial line in their belly button there is a chance it can fall out and they will need to be sedated to get it back in .. or , if you move them too fast with Cpap on the water in the tubes can rush to their lungs and they can choke. One of the scariest is the earliest touch .. babies born too soon have underdeveloped nervous systems and too much stimulation can cause brain bleeds or strokes. The only touch they know is the pain from endless procedures and needle sticks.. they begin to associate all touch with pain.. it’s terrifying. It took James almost 14 days to touch Maurice and I didn’t hold them until they were about a week old and had the umbilical lines out. Yes you are sad .. you are so so unbelievably sad.. but you know there is no where else they can be. For me this was also such a important time of action. I didn’t even know what I was feeling because there was so much to learn and understand. The NICU is critical for their survival. I was so scared of their heart and kidney failure .. my missing them was secondary. I just prayed so hard that they would live. Each day I saw them I thanked god they were still breathing.
Things have changed. My precious baby boy does not live in a box. He is in a crib. He does not need the strict temperature control of the isolette .. He just needs to wrapped in a warm blanket. He wears clothes that I bring home and wash and then bring back to dress him in. I come at night so I can give him a bath.. I pick him up myself .. clean him.. he opens his eyes and watches me. He smiles. He knows when I am with him. I know he loves when I hold him because I can see the change in his vital signs on the monitor. His breathing improves. His damaged lungs work better just by being on my chest. How can I not hold him all the time.. he is having trouble eating .. He needs his mother to be the one feeding him. How can I leave my perfect beautiful baby boy alone in a crib .. staring at the ceiling .. a camera above him so I can log in at home and watch him lying there .. ( I thought I would love that camera but I can’t watch it.. not even for a second)… To see him in the hospital alone without his brother or sisters .. It’s becoming too much.
Last night it was way too much .. I cried .. I cried because he is still sick .. his white count dropped and now we are watching for infection.. his retic count isn’t going up as much as we would like which could be a sign his body can’t make the cells it needs to.. his tone is increased which could be a sign of some really bad things I can’t even bring myself to think about.. his breathing is still fast and his little lungs still working too hard.. the state test for his urine amino acids is still abnormal… his eye exam today showed his eyes still aren’t where they need to be ( preemies are at great risk for something called retinopathy of prematurity and can become blind from it.. exposure to high oxygen levels is a risk too) but again no one is too worried .. all of this is “let’s just watch” and recheck it. Any intervention would have risks too. Even the oxygen he is getting can cause toxicity to his eyes and lungs. I’m becoming impatient. I cried because I miss him.. I cried because he is alone .. In a crib with strangers taking care of him. Being with Peter is a constant reminder.. I thank God I have him with me but at the same time still feel so incomplete. I know Peter needs him too. I want my boy home with me so bad.. so very bad my heart hurts.
His feeding is the most important thing right now. He was doing so well and then the vaccination put him back. I’m holding the other vaccines until he can take his bottles. Pertussis was what I was most afraid of and he had that so for now we will just work on getting out of this hospital. He took all his bottles last night but this morning and afternoon nothing. If he doesn’t wake up to eat his food, it is just pushed through a tube from his nose to his stomach. He needs to eat to be able to come home. He’s on my chest now and it’s time to eat but he’s not “cueing” or showing any signs that he wants to eat. His is fast asleep breathing a little too fast. We will just push the food through the tube .. but I will hold him during it. Just rest my sweet boy.
Our time here does have an eerie tranquility to it. Our moments alone like this will be few and far between. I have 4 kids now ( 4 omg??!! ) and at home so many different responsibilities. There’s cleaning and laundry and more laundry.. There will not be hours a day where we could just cuddle. But I promise my sweet Maurice .. when you come home to me I will keep you tucked in to my shirt and close to my heart every single day. You will has so much love… we will make up for every second we spent apart.
I’m sure it’s different for everyone. It’s a rollercoaster .. everyone warns you about the ups and downs.. the good days and bad days.. for me this is by far the hardest of the hard. Many can’t understand it .. until you have lived it. I know so many have had it so much worse.. and my god how my heart breaks for them.. I know we “are getting closer to the finish line ” as my husband says.. I know it’s only a little while longer and no one knows more than me how very incredibly lucky I am to even have him on this earth. I am so very grateful to the bottom of my soul. But how a little piece of my heart breaks every time I have to leave you, there are only a select few who can understand that. Remember this is your temporary home ..’it’s not where you belong 🎶 I will be strong for you as you have always been for me. I will be strong because it is the only choice I have. I love you my Maurice.

Day 90 maurice off of feeding tube and scheduled surgery

When you look at something everyday .. eventually you stop “seeing” it. Mia started school last week. Being in a new place with her ..watching her sit at her desk for the very first time .. really reminded me of this. Think about your first day in a new classroom. You take every bit of it in .. each picture on the wall .. the colors the sounds.. you can’t help your eyes from roaming around each and every corner. Your senses are heightened. But as time goes on, the space is just there. It is what it is.. the colors don’t look so bright and sounds ( like the bell signaling you to change classes) no longer sound as loud. The strong smells from the lunch room and gymnasium are barely even noticeable.
You get comfortable. You become less aware. The same thing happens when you sing your favorite song.. or say your prayers .. do you even hear the words anymore .. what they mean .. it becomes a reflex. When our senses are exposed to the same thing over and over again.. even the taste of your favorite food … you start to get desensitized.
This progression is something that happens unconsciously. It is human nature. After months in the NICU, you develop this strange comfort. Each day hardens you a little more than the last. The pain is still there.. for me the pain gets worse .. but the place itself changes. In the beginning it’s just terrifying and overwhelming. You can’t help but memorize each wire.. trace them from your babies body to their corresponding machine. .. the loud vibrations of water through the Cpap machine and the drone of endless beeps .. it is all deafening. Everything smells like hand sanitizer. You are always cold… a chilling cold to your bones. You are “mommy.” At least that’s what everyone calls you. But you don’t feel anything like a mother. You are there to be with your baby. A baby you can barely see or touch. I was wheelchair bound the first few days and could barely stand up long enough to look inside the holes of the isolette. I would reach up and hold their tiny hands as long as I could. I would always try to time it and make sure I spend the same amount with each of my boys when they were in separate rooms. I knew both rooms inside and out.. even how many steps it took to get to them.
But time goes by .. you stop “seeing” it all. Staring at the walls and monitors when you are alone in a room for hours at a time becomes the norm. You no longer feel the same paralyzing fear when you see their translucent skin hanging on their small bony body… The nurses would tell me, when I would ask to hold them, “one day you will be able to just reach in and pick them up yourself. ” It sounded so foreign and impossible.. but sure enough ..days turned into weeks and I was able to do it. I would monotonously detach the tubes, leads and wires.. pick up my baby .. put him on my chest .. and then begin quickly reattaching everything while he was lying on me. I can reach in and change their diapers. I can give them baths. I can pick out their outfits and dress them.
The fear started to fade.. the environment the same ..but my perception evolving.
It has been 90 days. My son Maurice has been in the NICU for an entire season .. summer came and went.. we are still here. The room isn’t as cold. The machines a little less scary and many times I don’t even look at the monitors. The tubes on his face …almost a part of him.. I never saw him without them.
I walked in a few days ago .. as I have literally done a hundred times before ..and peeked at him quickly before rounds. My sweet nurse asked me if I noticed anything different. I didn’t… I had to go back and look again. I stopped “seeing” what was in front of me. My boy .. my strong precious baby boy didn’t have his oxygen in. We were anticipating him going home with it. The doctor decided to give him a trial off “just to see what he does.” He has been on two different medications three times a day and I can see a change in him. Well, he did it! I am not surprised at my Superman! It has been almost 4 days now without any respiratory support. My boy is still breathing fast but he was doing that even with the oxygen on. His doctor explained to me that because of his chronic lung disease he has difficulty getting co2 out and having supplemental oxygen won’t change that. His lungs just need time to grow. There is scar tissue built up that will never go away. We don’t know what the future holds but at this moment .. my strong Maurice is breathing on his own.
About 48 hours after that, his feeding tube was taken out too. He is eating and breathing. When you have a baby .. do you ever think about that baby not being able to eat or breathe ? Forget the torment of not having them with you .. not being able to hold them each night… but to think your baby might not be able to do the basic things needed for survival .. to watch him struggle for months ..how I prayed for you my angel. How proud of you I am .. you are my warrior.
We would have been going home. On Saturday the doctor and I discussed his progress.. and our plan was to go home today. She then got up to examine him. I saw the look on her face and knew it wasn’t good. His hernia is much larger than we thought. He is having surgery tomorrow. The past 72 hours have been filled with so many emotions. To know my baby is now ok.. he is no longer the one pound preemie requiring countless measures for survival. He doesn’t sleep in a temperature controlled box.. he doesn’t need a machine to breathe.. he doesn’t need a tube to eat.. my boy ..his face free of all the apparatus.. you belong with me now. How seeing you here .. leaving you here has become so much more than I can bare.
I stopped “seeing” so many things around me for a while now. I almost can’t remember what it felt like to hold your bony one pound body… how many hands would shake. I’m so sad that I can’t be with you .. I’m so so sad and I almost am not able to celebrate your progress because of it. I’m sorry my love. It will pass.. I’m afraid of surgery. I’m so tired of always being so afraid.
In the midst of this.. my dear talented friend Maegan sent me pictures. Pictures she took on my wedding anniversary July 4. The boys were about 3 weeks old. It was just about the time when I started to get some of that comfort. But this day was also very special because it was the very first time James ever held them. I have taken thousands and thousands of pictures. But there is something about these.. I can feel every emotion looking at them. They are a reminder of where we were and allow me to celebrate a little today. When she sent them she said, I hope there’s some reason why today is meant to be the day I send these to you. It was the day I was told he could come home and then minutes later told we need to have surgery. It was a one of my hardest days. These pictures remind me of what I stopped seeing. When I feel like I can’t do anymore .. it reminds me of how strong I really am. It reminds me of the miracle I have been blessed to live. I’m so grateful for them.. so grateful for my sons.
Please keep Maurice a little closer in your prayers for the next few days .

3 months old

My dad used to run marathons.. he would always say, “Never forget it’s 26.2 miles.” That the 0.2 miles at the end are the hardest. The closer the end gets.. the more challenging it is. It’s almost like you can see the finish line right in front of you, but you can never get there. It takes every ounce of strength to get through that point when your body is so fatigued it can barely keep moving. This is our 0.2. I have nothing left. Yesterday our boys turned 3 months old. I celebrated Peter’s birthday with an evaluation from the Early Intervention Program. The REIC or Regional Early Intervention Collaboration is a program that provides home services, such as physical therapy and speech therapy, to children with delayed milestones up to three years old. Click here for more information Early Intervention. In other states, such a New York, babies born under 1500 grams automatically qualify ( Peter was 1170 and Maurice 790 grams ) but in New Jersey you have to be evaluated to “qualify.” They look at motor, sensory, cognitive , social and communication skills. They also evaluate your child’s ability to self help. Although Maurice and Peter are 3 months old , their due date was Sept 6 and their adjusted age is that of a newborn. There will likely be delays because of this and early intervention is truly the key. I was almost “happy” I was able to get him in. You do not need to be referred to this program from your pediatrician. Our amazing physical therapist in the NICU told us about it. You can refer your child yourself by calling 1-888-653-4463 in the state of New Jersey. The evaluation is free and nothing goes on their “record.” You will receive a report that you can submit to your pediatrician if you so choose. The program is also voluntary and you can discontinue services at any time. I cannot stress enough how many studies have shown the benefits of early intervention and how much I recommend it to any parent concerned of their child’s development. Maurice’s birthday yesterday was yet another month in the hospital. He had his surgery two days ago. The hernia was larger than we had thought and he had to have general anesthesia. It was a very scary time but I’m so happy to say he did incredible. He came out and woke up right away.. he didn’t require any additional respiratory support and was able to eat. Everyone is so proud of him. Last night Maurice had an MRI of his brain to evaluate what tormented me in utero. Very early in my pregnancy, I was told by Columbia, Maurice likely had a devastating neurological disease. I remember the day like yesterday. After the hour long ultrasound, they brought us into the conference room and said he was missing part of his cerebellum. I begged the doctor to tell me what she thought it was. Her response, without any delay, was Dandy Walker. She suggested I meet with the neurologist so I could learn about how devastating this disease would most likely be. In their report the called the cerebellum “banana shaped” which is also associated with horrendous disease. They recommended termination due to this along with his small size ( he was measuring <1% and Peter >90% ) and abnormal umbilical cord. They told me he would “likely not make it and if something happened to him it would harm Peter. ” As the weeks and visits progressed the reports became more grim.. they said there was a malformation in Peters jaw.. a problem with peters heart .. a dilated aorta.. the list was devastating. They doctor went on to say that most people at this point would ..”scrap the pregnancy and start fresh..” I was not even in my second trimester. I was heartbroken and I couldn’t do it. I found a maternal fetal medicine specialist .. a doctor who is revolutionary in his field ..our angel Dr. Ruben Quintero. After two separate MRIs on Maurice’s brain (while he was still inside my stomach) it was determined that he had a benign cyst known as a Blakes pouch which would have no effect on his neurological status. We repeated the MRI now that he is bigger to see if the cyst is still there. We just received the results and his brain is normal. This has haunted me for almost a year. To know my son’s brain is normal.. confirmed now once again on an MRI .. is a miracle. Dr Quintero also educated me on SIUGR (selective intrauterine growth restriction) or having a “small baby.” He said, as long as we stayed in stage one ( good flow in umbilical artery) the likelihood of his demise is very small. He continued to recommend we were monitored closely. Although the boys did have a large discordance in size (ranging from 60-90%) throughout the pregnancy we remained in stage one SIGUR and Peter was not in significant danger. It was Dr. Quintero who gave us hope. He spoke to me numerous times before I was even his patient. He treated me like a person.. like family. I knew he cared about my babies. He and his colleagues spent countless hours educating me and comforting me. His advice was based on strong medical data and numerous studies. He is a pioneer in his field and the true definition of a physician. I have never met anyone like him. When I think back to the moment my life changed.. it was not just when we became pregnant. I was told so many times we would lose the boys during our first few weeks at Columbia. This was all based solely on early ultrasounds. The nature of ultrasound is so very subjective. Each technician can do the same test 10 times and come up with a different number. You are looking through skin.. fluid.. amniotic sac .. at a baby the size of a penny. I decided to leave Columbia when my symptoms of TTTS became severe. They no longer brought us in the conference room to discuss the results. When I asked about surgery for TTTS I was told very directly… “we do that surgery to save healthy babies.. and you don’t have healthy babies..” I was 17 weeks pregnant at the time. That weekend was Palm Sunday and I broke down both mentally and physically. The picture that was painted made sense.. twin pregnancies are at a much higher risk for genetic problems.. Maurice was so so small not even measuring on a growth chart.. their hearts abnormal .. brain issues.. and now even Peter’s face. My advanced maternal age also puts me at higher risk of complications…how could they be wrong about so many things? Was it even necessary to do more tests.. I was sick so very sick from twin to twin transfusion syndrome.. how much more could I put my body through.. my family through .. for “unhealthy babies.” I belonged to every Facebook support group I could find. I would ask take advice from anyone who had knowledge on the subject. Early on I called Mary Salman the founder of the Twin to Twin Transfusion Syndrome Foundation. She also provided priceless education in regards to the disease and treatment of TTTS. I asked her who she thought would be best to manage my case. She told me she would have to say Dr. Ruben Quintero. She said, “…if there is any problem during surgery or something unexpected.. he will be the one to know how to fix it.” It made sense. He developed the instruments to operate on an anterior placenta ( which I had) and is a pioneer to many other surgical techniques in utero. I was in touch with his office very early in as a “just in case” but at this point didn’t see how he could help us. I just knew I needed to do everything and anything possible to save the boys. I posted desperately in one of my groups that weekend.. I begged someone to help .. if anyone had any advice. An angel private messaged me with Dr Quinteros cell phone number. I called him.. 10:00 pm Palm Sunday night.. and he answered. He explained facts about SIUGR .. educated me on discrepancies in ultrasound technique ( particularly with the ductus venosis) and said come to Florida. He said ..” I cannot promise you everything will be ok .. but I will do every test needed and statistically speaking you have healthy babies..” It was not false hope. It was a promise to do real medical studies such as a MRI and Echo and base his recommendations on what he finds. It was that phone call and trip that changed our life. It was that angel of a man who saved my sons. We did end up needed surgery for twin to twin transfusion syndrome. And we did have problems. At 27 weeks my boys were in grave danger. Peter had heart failure from fluid overload. Maurice was in kidney failure and had no fluid left in his sac. I had contractions and was going into labor. The excess fluid expanded my uterus and made my body think I was ready to deliver. The cut off for surgery for TTTS is 26 weeks. I would have been left with no other choice but to deliver my very very sick small babies. But we were prepared. We already had a relationship with Dr. Quintero. They were able to stop some of my contractions with medication and stabilize us just enough to get on the plane to Florida. He agreed to operate. Every day the boys stayed inside helped them survive. It bought us enough time to get steroid shots to help their lungs and magnesium sulfate to help their brain. He performed the surgery the next morning. Their connecting blood vessels were very large. They were about 5 times the “normal” size. They were not only taking blood and nutrients from one another but they were also dependent on each other for survival. If Dr. Quintero would have performed the traditional surgery where the blood flow between the babies is completely separated .. I would have lost both of my sons. He had to perform a variation of the surgical technique he had originally described. A rare procedure necessary for about 5% of cases known as Supra selective laser surgery. This technique is not yet published or in any literature. It involves balancing the blood flow between the boys rather than separating it. There is no other physician who performs it at this time. There is also no way to know if you need it .. you cannot see the size of the connecting blood vessels until you are having the surgery. For us, Mary’s advice was lifesaving. If we had not gone to Dr Quintero, our boys would not have survived. I pray someone in need one day will remember our story and it can do the same for them. It is a very humbling experience. To be able to look into the eyes of someone who has saved your children. To know that because of this man’s “job” your babies are still alive. It is the definition of gratitude and love. He is not only a genius Physician, but also becomes a friend to every parent of every child he has treated. I will one day return with my boys so they too can meet the man who has saved their life and thank him. They will always know. When we left the hospital in Florida he said to us, “..take my cell number and call me if you ever need anything .. always.” I know he meant it. We are still in contact today and I am dedicated to helping him raise TTTS awareness and obtain funding to publish his work .. especially the data he has on the procedure he performed on Peter and Maurice. TTTS is well known to the mothers affected by it. If something can harm your child, you learn.. you learn because your child’s life depends on it. However, there continues to be a need for further education in the medical community. Not all TTTS centers and treating physicians are trained in all surgical techniques. It is a very rare condition. It can happen suddenly. Within this rare condition there are some variations. Ask your doctor about their statistics. How many surgeries have you performed? What is your success rate? What is your success rate with an anterior placenta? Have you ever encountered a situation where the vessels were very large? What is your treatment if a complication arises? The membrane is very fragile. One rare complication during surgery it that it can rupture. There is a procedure that Dr Ruben Quintero has been doing for a number of years know as an amino patch. It can save babies after a ruptured membrane ( membrane rupture could happen after other things as well such as an amniocentesis). It is a relatively easy procedure however not all hospitals or physicians can do this. Some facilities will not even present it to you as an option. Know your doctor. For us, there really was no decision to make. It was not easy to travel back and forth to Florida. It was an expense. I have two other children at home that needed me. But, for so many reasons, Dr Ruben Quintero is my only recommendation for patients who have twin to twin transfusion syndrome and need laser surgery. If you need help or assistance know there are organizations that can help. Contact Mary Salman from the TTTS foundation .. reach out to other mothers. Your child’s life may depend on it. I’m am sitting in our room waiting for them to return my son. He just left for his circumcision. This is the last procedure we need to do before he can come home. I can barely believe the words as I type them. The tears haven’t stopped today. The happiest of happy tears. My son will be home and family and heart again whole. It is surreal. This final stretch has been the longest. I do not remember what life was like before the NICU. Having to leave my babies .. juggle them .. watching my children suffer. Watching my sons grow outside my womb. The medicine that gave them life. It has remolded my heart in ways that have forever changed it. I will never be able to find the words to express my gratitude. To my husband for our children and his support, to my father for coming with me to every ultrasound appointment and then sitting beside me everyday in the NICU while James was at work.. my mom who moved in my home to ensure I would be able to spend as much time at the NICU as I needed .. who made sure my other children were always happy .. My parents are angels.. I pray to be like you for my babies… the most selfless people.. who live and breathe for us.. .. my sister what would I ever do without you.. my best friend and second mother to my girls… I have been blessed.. I will make sure my son’s always know what you did for us… our family and friends .. every call and message …the strangers that I have come to love like family … the practitioners and life saving medicine that gave my boys the ability to survive being born months too soon.. I have never believed more in a higher power and the strength of prayer. I know with all my heart that all the positive thoughts and energy given to them aided in their success. Thank you for following us in this rollercoaster of a ride. This is my heart…My attempt to document the pain and beauty… our journey .. our story ..so it may one day help someone else and so that my boys always remember how incredible they truly are. So they never forget how much they are loved. But mostly today I am thankful for my sons Peter and Maurice. You have grown my heart larger than I could have ever imagined. You taught me about love and strength. You have taught me what it truly means to be a mother. God knew my heart needed you. My sons this is just the beginning .. the beginning of the beautiful life we will spend together. Counting the seconds until we are all together as one. Your family cannot wait to meet you and shower you with love endless love. As your papa Maurice says .. you will always be held in someone’s arms and never alone again. Please take a moment today to send prayers and blessings to those who have not been so lucky.. to those who have suffered and lost .. espically to my dear friend who lost her son to TTTS and who has been my strength and light throughout our journey. I love you and will forever admire you. Thank you.

Happiness

Happiness is just outside my window. Would it crash blowing 80 miles an hour. Or is happiness a little more like knocking On your door and you just let it in… Happiness feels a lot like sorrow. Let it be you can’t make it come or go. But you are gone – not for good but for now. Gone for now feels a lot like gone for good Happiness is a firecracker sitting on my headboard. Happiness was never mine to hold. Careful child light the fuse and get away. Cause happiness throws a shower of sparks Happiness damn near destroys you. Breaks your faith to pieces on the floor. So tell yourself that’s enough for now. Happiness has a violent roar Happiness is like the old man told me. Look for it but you’ll never find it all. Let it go live your life and leave it. Then one day wake up and she’ll be home Home, home, home Happiness by the Fray.. my NICU anthem The song I held my babies to everyday Through the endless ups and downs Through the happy days and the sorrow Praying they would keep breathing … Praying their heart would keep beating .. Praying to get the home. To the NICU mom .. so so happy for the birth of her new baby and yet so broken at the same time. “Happiness feels a lot like sorrow.. let it be you can’t make it come or go..you are gone for now .. NOT for good but for now..” Never lose faith. You are not alone. Believe in miracles. They do come true. Thank you God for choosing me. My sons born at 28 weeks 5 days Laser surgery by our angel Dr. Ruben Quintero for TTTS at 27 weeks Peter James 1170 grams 51 days in the NICU Maurice Jace 790 grams 93 days in the NICU We are finally home

World prematurity day

I know today there is a woman who just became a mother.
It is nothing like she had planned.
She is being wheeled out of surgery on a cold hard stretcher passed a small dark box… everything inside her is yearning for her newborn.  To have your baby immediately taken from you after delivery and sent to a team of doctors and nurses, without you even getting a glimpse of them, goes against all the instincts you have.  She uses every ounce of strength to lift her head up just enough to see her sweet child born too soon inside.. but instead, all she can see is a black mask and wires.. so so many wires…  Her newborn baby is lying in an incubator .. fighting so hard for survival.. for each breath.. every heart beat ..  She reaches out to touch him… almost for proof that he is really there.
It is pure happiness but it feels so much like sorrow.  She is filled with gratitude… from the depths of her soul so very thankful her child is alive.. but the fear of losing him is all consuming.  It is not just a fear but a reality .. she will be told again and again.. “survival is not day by day,  but hour to hour… ”   It is the beginning of the roller coaster ride.
She is standing in the same room I stood.. leaning over the same box I watched for 93 days.. begging whoever her God is to keep her baby alive. She will get a course in medicine she never wanted to have.  She will shed more tears than she even knew her body could produce.  She will gain a deeper appreciation for the word family and learn so much about people.  Angels will be there to help and carry her through.  She may have known she was having a preemie and did everything humanly possible to prepare for this moment.. but you never really can.  Days turn into months as her baby grows outside her womb barely alive.
She starts her firsts..  one week birthday means a head ultrasound to rule out brain bleeds.  She waits each of those seven days knowing its coming and there is a chance her child’s brain is hemorrhaging.  The thought is so horrifying she is afraid her touch could hurt him.  Preemie’s neurological systems are not fully developed and they suffer through endless painful procedures each day.  They say these babies start to associate every touch with pain.  His kidneys are failed.. heart maybe not working.  He is only breathing because a machine is doing the work for him.  The endless drone of beeping and alarms is deafening.  The doctors are all “cautiously optimistic,” another fun NICU phrase, that is said often when you hear good news.  There is always that reminder that at any moment it could all change.  The firsts continue to surgeries.. blood transfusions..episodes of apnea or not breathing..  and there that new mother is .. toting her NICU bag .. singing songs.. reading baby books… decorating her isolette, pumping breast milk… praying .. so much praying.. trying to figure out how to be a mother and how to care for this precious fragile baby no bigger than a ruler weighing not much more than a pound.
She is in that room with time standing still.. “hurry up and wait..” but life continues.. she has other children she must care for at home.  She has to leave her baby alone each night and go about her other life with her family.  It takes everything not to break down.  When the day is quiet she usually cries herself to sleep.  She is broken in half.. leaving behind a piece of her heart everyday.
And as she is trying so hard to figure it all out.. minutes turn into hours..hours into days.. days into weeks…you never really figure it out.. it doesn’t get much easier but it becomes your new “normal.”  She stops jumping so high every time an alarm goes off.. she learns the lingo and routine.. the people and machines become familar.. and  You watch this miracle grow… then you begin to grow too.
Your firsts will eventually change.. the first time you feel your baby skin to skin.. the first time you see your babies face without a mask on it… the first time he can regulate his own temperature and sleep without being inside a box.. the first breath of air he can take on his own.. his first day in clothes.. first bottle.. first time you see his body without tubes and wires in it.
And then by the grace of God…her dream will come true.. the first time you can kiss all your babies goodnight and wake up together as a family.. together under one roof… her heart will start to mend.
I wish I could tell her this…
It’s not what you planned but you will be able to find beauty in it one day.. that space the bond you will form with your child will be like no other .. look at your baby .. really look at them… past the tubes and wires.  watch how strong he is … how incredible this miracle is in front of you..  . you will find your strength in him.  Success is not just what you have achieved but it is also what you have overcome.  They don’t give up so either can you.  Find love and support.  You will need to live two separate lives… you will have a NICU life that few really understand and then you will have to continue with “regular” daily life.  To switch back and forth.. to try to ‘have fun”  knowing your child is barely alive is one of the hardest things I have ever had to do.  You will need to be surrounded by genuine love.  There is something about human nature that makes us take so much for granted…  but the minute you think it could be taken away from you everything changes..you will gain a new appreciation of the “little things” in life.  Watching your baby breathe and eat become so very special.   There are very few people who know what it is like to watch their child suffer… day after day after day…  surround yourself with people who can comfort you.. join support groups.. talk to someone who has gone through it.. message them.. email them.. you will be surprised how many angels you will meet along the way if you just open up and look for them. I am so thankful to have had so many.  Most importantly have faith.  Believe your baby or babies will be home with you.  Believe it with your entire soul.  I even did a nursery .. I had to picture them here in my house.  Find something to help you pass the time… and as hard as it is, take pictures and try to keep records.  You may be afraid to look at them now but one day they will deserve to see them.  I started to write.. I am far from a writer but I needed something to help me understand what I was feeling.. to help me remember where we were and how far we have come.. I want Peter and Maurice’s journey to comfort someone in need.. the final stage of healing is using what happens to you to help other people.. that’s healing in itself.
To that mom standing in our old room in the NICU right now… It is not what you planned… it not not because of anything you did… you and your babies don’t deserve this … I am praying for you.  To the mom that did not get to take her baby home.. my heart is with you and your angels are in my prayers.  I am so very deeply sorry.
Today, November 17, on World prematurity day, a day observed to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide, I celebrate my son’s miraculous journey.   I am so incredibly lucky to have been chosen to be their mother.
Where there is hope ..there is faith…    where there is faith miracles happen.
In loving memory of Thomas Peter 💙

Happy new year

Surrender to what is
✨Let go of what was
✨Have FAITH in what will be
Breathe and believe in the powers from above
so many things in this crazy beautiful life are beyond our control
2019 goals
My Surrender experiment ✨
practicing the balance of when to push and when to let go ..
to live fully the life I have been given And surrender the illusions of control ..
Having to give up always trying to understand and accept not knowing .. to find peace in it all ..
Peace resulting from retraining my mind to process life as it is rather than what I think it should be ..
accepting myself as I am .. feeding my soul and not ego and surrounding myself with those who choose the same ✨
Never in my wildest dreams would I have planned this … and yet somehow it all seems so right.. every step led me to you… made us become us ..
“god knew my heart needed you..”
your heart cannot help but change after you witness miracles ❤️

Nicu awareness month Sept 6 was our real due date

I dreamed of you growing .. you were so so small And dreamed of you breathing .. without endless tubes plugged into a wall From there …I prayed Your heart would keep beating Our moments together in the NICU always felt so fleeting Finally you came home … our life was so complete Your beautiful sweet sisters and cousins here for you to officially meet And I began to dream again…. Of the wonderful things you would do Would you be able to walk, stand or crawl .. no one could tell us still .. I dreamed even more … prayed.. And sometimes just wished That the day would come When you could walk over to me and just simply give me a kiss My incredible darling sweet boys I can see it now You are crawling and standing and it’s all a miracle how .. How I always saw you in dreams … It is all coming true There are no words Just WOW to all that you do I believe in miracles.. I have no doubt that they are true I believe in angels I know they sent us the wonder and beauty of you To our angels that saved our life especially Dr Quintero To our hero’s that supported us along our fight I know miracles are true my boys because I have you ❤️ To all the mamas in the NICU NEVER LOSE HOPE and to my precious boys I love you more than you could ever know

Meeting our hero

THIS IS OUR HAPPY ENDING
AND BEAUTIFUL NEW BEGINNING
ALL IN ONE !!
I’ve been dreaming of this moment since I first heard this incredible man’s voice at 15 weeks pregnant.
Before him.. there was no hope. We were told Maurice had a devastating brain disease and that Peter had a severe heart condition in additional to facial abnormalities. They told us my sons had “multiple congenital anomalies” and we were told from a very well know maternal fetal medicine specialist at one of the best hospitals in NYC “ at this point most people just SCRAP the pregnancy and start fresh.” On top of all this the umbilical cord was missing a vessel and Maurice was 75% smaller than Peter and hanging off the placenta. We were in the very early stages of twin to twin transfusion syndrome and I had an anterior placenta ( this can make the surgery more complicated) Each visit , 3 different maternal fetal medicine specialists at the number one hospital in Manhattan continued to give a more horrid prognosis. When I asked about my developing twin to twin transfusion syndrome I was told bluntly “ we do not operate on unhealthy babies…” As the doctor walked out of the room. That was when I broke. All of this was only diagnosed through very early ultrasound. These conclusions they made were without a fetal echo or brain MRI.. yet they continued week after week to stress that my babies were suffering from “some genetic abnormality being expressed differently between them” and It is highly unlikely I will even have one healthy baby. It was made very very clear that at the very least I should “selectively reduce “ aka abort Maurice my baby B in order to “ save baby a”… after a few more weeks even that was seen as a poor option because of the heart condition they “saw” in Peter.
We were given no hope ..I desperately pleaded to other mothers who had similar complicated twin pregnancies in a social media group. I called the TTTS foundation and spoke with the founder Mary. I was given Dr Ruben Quintero’s cell phone number. An angel messaged me late Palm Sunday night and said “ if anyone can help you .. it is him.” I called and he answered. He spent over 2 hours talking to me that night… he said “ I cannot promise you your babies are ok.. but I will do everything possible.” There was no false hope … he gave me facts and educated me about the disease .. there was kindness and such humanity .. such love… how much his work meant to him… how much his babies meant to him. It was the first time anyone told me that they may be ok… it was the first time I was able to image holding my sons in my arms.
I almost didn’t believe it and called back the next day so my husband could hear … James knew as well .. we had no other choice but to go to Miami and meet Dr Ruben Quintero. We were on a plane that night and saw him first thing in the morning.
That choice will forever be the moment that changes our lives. Our sons are here because of him.. because of his incredible team…
He is genius a Yale graduate known for creating the field of operative fetoscopy. He develops surgeries that can be performed in utero. He has invented serval surgical procedures including the amniopatch and SLPVC ..the surgery that saved my boys when they suffered from twin to twin transfusion syndrome. His latest is a fetoscopic repair spina bifida. His inventions and new surgical techniques gives hope to people who have none. He saves babies. Because of him they are given a chance … and women given a chance to become a mother. It is his passion … and his is a genuine healer and we are blessed to have found him.
There is not a day that goes by that I don’t thank God for him and for my miracle babies. He is not only their doctor but also a friend. He has true joy seeing his babies grow.
This is the moment when we all met our superhero. This is the moment I have dreamed of for so so long. The amount of gratitude we have for him can never be put into words. We are planning a reunion for all the mothers and babies he has saved.
Thank you Dr Ruben Quintero and Dr Eftichia Kontopoulos for you devotion to medicine and to our babies. We are so blessed.