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

The night before our real “due date”: 39 weeks and 6 days : The Schedule

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 .. 💖

 

http://www.eurekaselect.com/115921/article

Day 72: 39 weeks old

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 .