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 💙

#worldprematurityday #tttssurvivor #micropreemie

 

 

 

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 gonenot 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 ❤️

Must Have Twin List

I thought I knew everything I needed to know about having a new baby… Peter and Maurice are my numbers 3 and 4. The best this or that… But it all goes out the window when you have preemie twins. Especially after spending so much time in the NICU. Their needs and wants are very different. I have found some amazing products with the help of friends that have been life savers for me and many other moms!

1. Bottle feeding. We tried every bottle.. and I mean every bottle. The como, the tommee tipe, life factory, joovy, advent , dr Browns .. Maurice would not take any of them. Amazon prime comes in very very handy! I resorted to ordering the same nipples he was using in the NICU. They are from similac and disposable and $1.00 each which can get very expensive.. ( and for some crazy reason only sold through amazon. ) Finally a friend told me about MAM. The nipple is flat.. shaped a little different. It is the only one he is able to use. If your baby is struggling with bottle feeding I strongly recommend trying these! They are also anti colic which is a big plus. My advice is to avoid buying bottles in bulk until you know what your baby will like. Buy a few and then once you know stock up. With prime they are delivered to you within 24 hours so there is no need to stock up until you are sure. In my experience many of the big brands are very similar.. advent .. dr Browns etc are not much different. MAM bottles have a very unique shape.

Buy MAM bottles here

2. Hands free feeding. This is a big one. You have two hands and two babies. It is very challenging to feed them both at the same time. I have tried a few different products and this one is by far my favorite. You can use a different nipple than the one supplied ( we are using a preemie one from life factory). Maurice is not able to use this yet but Peter is a champ.

Buy hands free feeding system here

3. Twin Z pillow. Double boppy. We live in this! I feed the twins using this pillow and also use it for tummy time. The pillow case is super soft and comfy and it comes in very handy

Buy double boppy here

4. Table for Two. This looks incredible but the boys right now are too small to sit up in it correctly. The weigh about 11 and 7 pounds. I think the boppy right now is better until they get a little bigger

Buy Table for Two here

5. Double pack and play. The famous pack and play .. but doubled. The boys would nap in here during the day when they first came home. They no longer will sleep laying flat due to reflux and are usually in the rock and play. I would try to find one with a little basket attached so you can store diapers etc for changes.

Buy double pack and play here

6. The Weego Twin Baby Carrier. Twin carrier that can be used for preemie babies starting at 4lbs. Easy to use. A favorite around twin moms

Buy the Weego here

7. Double halo. I love my halo. Twins should never sleep in the same crib or bassinet together because it can increase the risk of SIDS.  The twin halo has a separation in the middle making it safe for twins.

Buy Halo Twin Sleeper here

8. Owlette: This genius little sock monitors your babies oxygen level and heart rate. There is an app you can log into at any time and see the readings. The base station light s green when all is good and alarms if there is a problem. This has been one of the most important things I have for my boys. Please contact me if you need more information or if you are not able to afford the device as I may be able to help!

Buy owlet here Use code NICUMOM for discount

There are a few more and I will continue to update this post as I find things that help us 🙂

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.

 

Day 90: Off of feeding tube and oxygen .. Surgery for Maurice

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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 .

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 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 79: Our Due Date

I 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