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 .

Day 70: 10 weeks old

There will be a time for everyone when you will go through some type of trauma… some life event where your whole world is torn upside down. We are human .. it is inevitable. For me.. it is happening now… it has been a combination of joy and sorrow.. beauty and pain. The rollercoaster … Having Peter home and experiencing the gift of him with us has been such a blessing, yet at the same time reminds me how much I miss my Maurice. Leaving him in the NICU, alone without his brother, without me .. it is heartbreaking. My baby boy is in a new hospital. I don’t know the doctors or nurses very well. His blood pressure is high.. we are working him up for pulmonary hypertension. Tomorrow we check his kidneys and the pressures inside his heart. The doctors are trying to figure out why he is breathing so fast.. it is interfering with his eating because he can aspirate. Most of his food is still through a feeding tube. Im so happy they are checking everything but I am still so afraid. I’m trying my absolute best to be there for him and my other three babies at home. I cannot be all I have to be for anyone right now… including myself… it is impossible to be the perfect mother, wife, friend, daughter or anything at this moment.

The pieces of me are held together by those who continue to hold space for me. It’s a concept we use often when practicing yoga. It is something I did when working in psychiatry and I do with those I love. It is just being present. It is not “bothering” someone you love when you tell them you are there.. just there to offer space.. offer your love or attention. It is those who walk along side me.. those who continue to offer unconditional love and support without trying to fix or change the outcome of my problems. People who have gone through situations far worse and yet still take the time to comfort me.. they are my angels.. It is those who make me feel safe and comfortable in my decisions.. and allow me to trust my intuition. It is the people who have been there for months .. who lend me courage and strength by creating a safe environment and allowing me to feel whatever it is that comes up at that moment in time.

For months, my father has come to hospital with me. It started with my ultrasound appointments. I could not drive.. my mom would watch the girls .. and my husband would have to go to work. My dad will sit with me.. he listens when I cry.. he offers reassurance but truly allows me to feel whatever I have to .. if it is happy or sad.. he is just there for me… and when it gets to be too much .. he will wait outside for a few minutes. He will not let me see how hard it is for him…it is overwhelming .. he has seem me hurt so much .. and although I know it destroys him.. how difficult it must be to see his grandchildren or his daughter suffer.. he would never show it or make it about him. He has been a constant strength for me.. an example on how a parent should be for their child. It makes me better for my babies.. he would even visit the boys for me on days I couldn’t be there. I truly adore him and admire so much the man that he is.

There is never a “right thing” to say when someone you love or care about is suffering.. so many times you get caught up in these words … words that have no real meaning.. People will always tell me I don’t know what to say.. and that is ok! …true comfort comes from simply holding space. The practice of letting someone know you are present requires humility and you must be genuine. It means letting go of all your ego and understanding it’s not about you. Offering your attention.. not interrupting or working on your comment and response.. not asking a hundred questions… it is just listening… it is a very hard skill to master. It takes practice. The ego tries to sneak back in and find opportunities to subtly make things about you and not the other person. You have to be willing to allow the other person to feel why they want to feel. It is not your job to be a cheerleader or to somehow make all the pain go away. If you are holding space you need to practice acceptance…. not try to immediately change things. Your opinions are irrelevant when you are being present. Unless you have gone through the exact same situation .. you can never truly understand the feelings. Just being present is enough. Be compassionate. When someone listens .. without judgement or ego.. with full presence .. it is an act of compassion in itself. You don’t have to even say the words .. ” what can I do ..”. You are already doing it. An attentive loving presence in itself can relieve so much pain.

We are human.. we will all suffer at one time or another. It is so difficult to witness the ones you love hurt. You want to fix it.. you relate it to something you can understand.. you try anything to make the other person feel better using all your learned phrases “it will be ok”. ” “be positive”…. it’s not about empathy or trying to understand the situation .. you don’t have to put yourself in their shoes.. it’s just about presence and awareness. Pain is lonely. It is isolating. When someone holds space for you.. even though no real problem may be solved .. you still feel better.. you feel less alone.. you feel loved.. it is a spiritual connection for both people.. it is very safe.. very beautiful and it is an act of pure love.

It is a skill like any other. Most people get so caught up in “not knowing what to say” so they say nothing. .. so wrapped up in ego… Healers practice this daily.. others only understand it when they are suffering and need it. I have seen the best and worst in people .. from doctors to friends and strangers..

It’s not easy to know how to behave around someone who is going through a loss or true emotional distress. I know that I am the person who wants to fix everything for everyone. I have such a hard time seeing people I love hurt. But when someone you love is grieving .. I can assure you the best thing to do is not to try to fix it.. the best thing you could do is be present…even if just for a moment.. allowing someone to feel and to offer a safe nonjudgemental space free of your ego.. it offers pure love and healing. To the many angels I have had do this for me .. to those who have given me this gift.. it is something you can feel…. please know you are my glue.. the glue that holds me together each day as I try so hard to make it through in one piece… the natural healers that give me so much strength. I love you.

Day 61, 62 and 63: Bottle Feeding for Maurice

Maurice had 3 episodes since he has been at his new hospital. They happen around the same time each night.. not related to feeding … his heart rate and breathing decrease and he requires “stim” or stimulation to come back. It lasts for about 30 seconds. Here, at our new NICU, an episode is defined as any significant change from his baseline heart rate or respiratory rate requiring some type of stimulation. It is apnea ( breathing issue) and bradycardia ( heart rate issue). This seems like a loose description but again every baby is different.. for example Maurice’s heart rate is usually around 150s so if he drops to 100’s this may be considered an episode. Another baby might have a lower heart rate and a drop like that would be normal. We were told at our old hospital he did not have any episodes. It seems that the only one they have documented is the one he had when he was in my arms that I altered the nurse to. I am thankful that he is here and watched so closely.

In the last 24 house he has been episode free. They started “nippling” him which means offering him a bottle or breast. Some hospitals will not allow this until the baby is off of “high flow ” respiratory support. Here, however they explained, they have had significant success doing so. Also they assured me that the doctors and nurses are standing close by in case of any emergency. The first time we did it together we had about 4 different practitioners near us. I felt safe. It is not easy for a preemie. He took 2 full bottles since we started this process. His nurse was kind enough to call me and let me know he drank a full bottle last night because we were not able to be there. She was proud of him and excited about this moment and wanted to share it with us. They moved his feeding tube to his nose so he can get a better suction around the bottles. This is a very big deal. He has only been receiving food and nutrients through a feeding tube directly to his stomach. Although the intestines are formed at around 20 weeks gestation.. the important functions such as peristalsis (or the contractions of the intestines to move food through them.. ) and also very important digestive enzymes that help them break down food are not formed until about 28- 30 weeks. Having nutrients in your digestive tract will help it grow and mature faster. It is important for neurological development as well. Most facilities will practice cue based feeding and will only offer a bottle if your baby appears awake and alert and is showing signs such as sticking out his or her tongue. They also must have stable vital signs. If he is breathing too fast .. the baby can aspirate. I’m happy to say Maurice has been doing very well with this.

He also has moved to an open crib!! As soon as he came here they worked on getting him out of the isolette. He tolerated it fine with no issues and was able to maintain his body temperature. He is two months old. In the isolette his world was contained to a plastic box. He was in a private room alone. His only interaction with people other than me was when it was time to feed him and change his diaper. His nurse was very busy and had 4 other babies. He even developed diaper rash. He is now with other babies all around. His nurse put a mobile in his crib. She plays music for them. This stimulation is essential for growth and development at this stage. It used to make me sick leaving Peter and Maurice in an empty room filled with the sounds of beeps and machines staring at a ceiling alone. I feel much more comfortable knowing there are people around.

His NICU now offers primary nursing so I am looking forward to getting to know his main nurse. There are also only about 6 attending and they meet weekly to discuss each baby and come up with a cohesive plan. This is the biggest change and what I am most happy about!! Some continuity of care!

They were concerned about the episodes and were considering putting him back on caffeine but because he has done so well over the past 24 hours we are just watching him. His chest X-ray was “not impressive” which is a common term doctors use to describe things when they are not too bad. They said the lung volume looked ok but he had signs of mild lung disease which is to be expected. His blood work came back good except for high sodium which is easily balanced with some extra fluids. He met with cardiology and his ventricle septal defect “hole in his heart” is almost closed which is incredible. Physical therapy also evaluated him and is a little concerned about neck stiffness on the right and they are working with him to correct it so he doesn’t develop something called torticollis. He seems more alert and continues to gain weight. They decreased him to high flow one liter today. He is almost 5 pounds and he and his brother are starting to look so much alike.

My Peter is also doing amazing and is eating about double of what he was when he first came home. My girls are sick .. strept and pink eye .. and we have Peter on isolation at my moms .. ( thank god for nana )and are staying away from the NICU for a few days.. luckily everyone seems to be getting better.  I’m so scared with people who are sick being around us and Peter.  The nurses recommend no one holds Peter or Maurice until their immune systems are stronger.  I love having people visit but please understand when it comes to holding them we have to be very cautious.  The NiCU allows me to call as much as I want and I can even view Maurice on a monitor using an app on my phone.. it’s pretty amazing.

Slowly we are getting there!! I’m happy with where we are right now at this moment. It’s hard not to perseverate over the past. I know my babies have the best of what I can possibly offer them at this moment and so many times as a mom .. even though it is not ideal or “perfect”.. you have to find peace knowing you are doing your very best. I am .. but how I wish I could do more.. how I wish I could have done more in the past…what happens when your best wasn’t good enough…  I love you my sweet babies .. I promise I will stay here in the present and continue to do All I can for you. You have always done your best for me

Know your NICU

Know your NICU…

When you have a high risk pregnancy .. it’s all consuming.  You have appointments at least once or twice a week and many times you wish you could just be hooked up to a monitor 24 hours a day.   You don’t mind the multiple doctors visits.. you actually look forward to them.. because that is the only time you know for sure your baby is still alive. Those few brief minutes, when you can see your baby inside you and hear a heart beat.. those are the only moments you can breathe.. that’s when you could “enjoy” your pregnancy.

You stop caring about getting a good picture during a sonogram appointment.  Gender doesn’t matter.  The first question I would always ask is “can you find a heart beat”…   Fetal movement is always a good indicator of life later on in pregnancy.  You know your babies are ok because you can feel them moving.  When you have twins.. or any multiple pregnancy that goes out the window.  “Do you feel them moving?”.. the doctor would always ask me .. honestly,  I never knew what I felt.  Maurice was in a sack with no fluid .. he never even measured on a growth chart.. he was always so small.  My belly was shifted all to one side because of fluid overload in Peter’s amniotic sack due to Twin to Twin transfusion syndrome.  I couldn’t inflate my lungs because of all the pressure.  I felt kicks always by my ribs on the right, but was it one baby .. two babies.. a foot ? an arm? … I couldn’t differentiate any of it.  I only knew they were still alive when I had that probe on my belly and a beating heart was on the screen.  This would happen twice a week.  The rest of the hours in each day I would only pray.  For many other high risk mothers .. this is what pregnancy feels like.

You are so focused on your doctors who are taking care of you at that moment.  I had to fly out of state multiple times.  You have to do anything you can to try to ensure their safety. Instead of a baby shower or planning a cute outfit to come in you are reaching out desperately to physicians and other mothers.. literally anyone who can give you information about your condition.  I found tremendous support in Facebook groups and from friends who went through similar situations.  It’s terrifying… you need people who understand.  You know NICU life will be part of your journey …but during pregnancy all your energy is focused on delivering babies who can survive.  You pray so hard for miracles.

Many moms and doctors will tell you to “take a tour” of your NICU.  Meet the NICU doctors and nurses.. see the facility.  That’s all well and good, but how many people actually know what to expect or what questions to ask.  I know I didn’t.

I’m a PA and even after training and being familiar with medicine and hospitals .. I still didn’t know.  I knew there were different levels and assumed all NICUs of the same level are basically created equal.  I was wrong. I started this blog to help other parents going through similar situations.  I was ( and at many times still am) lost but everyday I’m learning more.

If there is one core message from our journey, it would be to be your own advocate.  In order to do this you must learn all you can about your condition, your doctors and your NICU.  It’s not fair.  You should be able to sit back and just enjoy this life growing inside you but you must be strong for your baby. They are fighting so hard for you. It’s challenging to navigate through it all but please consider this as a basic guide based on my experience and if anyone has any questions I’m always here to help in any way I can.

You might already be overwhelmed .. but do not leave out this important step.  You are doing everything to keep your miracle babies alive and then you have to leave them … every day and every night in the hands of the caregivers at the NICU.  This could be a blessing or a night mare.  You should know as much about your babies doctors (neonatologists) as you do your own.  The only thing that keeps you sane during this process is trust.  To me.. trust comes from knowledge and building relationships.

Schedule a tour.. but even more importantly know what to ask and look for during your tour.  Do not assume they will tell you everything you need to know.  Even NICUs of the same level can be very different.  Here is a list of important things to ask your hospital.

1.  Do you have one?  Don’t just assume your hospital has an experienced neonatal intensive care unit for at-risk deliveries.  Even babies born from healthy pregnancies may need NICU time.  Know what is available to you before it is too late.

2.  What level NICU:  they are graded based on what capabilities they have

Level 1: This is a well baby newborn nursery.  Basically babies born on their due dates with no issues.  They can provide standard medical care ( “late preterm babies” 35 weeks and later).

Level 2: This is a special care nursery which can handle “moderate preterm babies” 32 weeks or greater.

Level 2 is broken up into a and b :

Level 2a cannot provide respiratory assistance

Level 2b can provide respiratory assistance ( such as Cpap)

Level 3: A neonatal intensive care unit (NICU) can support “very premature babies” born 27 to 30 weeks and above.  They can provide respiratory support and delivery IV hydration

Level 4: regional NICU : (highest level of care) A level 4 NICU can provide care to “micro preemies.”  This is a term given to babies born at 22 to 26 weeks weighing less than 1 pound 13 oz ( Maurice was 1.7lbs) The biggest difference between a level 3 and 4 is the ability to provide ECMO (  extracorporeal mechanical oxygenation).  It is an advanced form of life support for patients with significant heart and/or lung problems.  A level 4 NICU also offers sub speciality surgeries such a heart surgery for congenital disease and may offer neurosurgery for brain issues.

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3.  What specialisties do they have:  Neurology? Cardiology? Physical therapy? Occupational Therapy?  Opthomology? Pulmonary ? If your baby is born early they will require a number of specialists. My boys had eye and ear exams, physical therapy, cardiology, pulmonary, nephrology .. even a genetic specialist was consulted. If you baby is born with a congenital heart defect that needs repair, is the a cardiac surgeon available at the hospital or would you have to be transported to another hospital? There are some defects that are not picked up during pregnancy and you want to make sure if it happens you have a plan. Sick premature babies require a team.  You want to know who will be a part of yours.

4. Outcomes and Statistics:  How do their statics compare to the national average. What is the survival rates of babies born at 30 weeks etc.

5.   How many beds do you have?  And what is the nurse to patient ratio:  There are 5 levels of acuity in the AAP/ ACOG guidelines. Guidelines suggest babies with more issues be cared for by more experienced nurses or those with special training . Like with any job, Registered nurses in the NICU can differ in their experience, and speciality training.  Ask is there is any level of speciality training for NICU nurses treating babies who are very small or who have more significant issues.  Also what is their procedures when the babies are more stable. Will they be on a 4 to 1 assignment? Meaning will the nurse caring for them also have 4 other babies to care for? In the beginning premature babies need a lot of attention. Anything more than 2 to 1 seems risky in my opinion. After they are more “stable” maybe 3 to 1? Ask! Bigger doesn’t always equal better ! Some NICS hold 60 babies .. it is going to be very different than one that has 20. Size may change the amount of attention you and your babies have.

6.  How many attending do they have? Do they have a fellowship/ residentance program and how often do they rotate? Do they make independent decisions? If there is a resident working with you .. will they consult the neonatologist before making a plan? In order to be a neonatologist you must first complete medical school. Then doctors do a three year Residency in pediatric medicine. After that there is a 3 year neonatology fellowship. If you have a resident or fellow know what year they are .. a first year resident is right out of medical school. This is very different than a third year fellow. You have the right to know what level of education your practitioner has and what degree of decision making they will have. Also if there are a lot of attending you will likely not have the same doctor treating your baby during your stay. Some attending rotate every few weeks and then new ones are there on the weekends. It is very important for you to get to know you babies doctors and it is almost impossible to do when they change constantly. The more they have the more change you can expect.

7.Are there nurse practitioners or physician assistants in the team? I am a PA and I can tell you our training and experience varies dramatically. A new grad PA has likely only had a few months experience in the nicu. A PA who has been there for years will likely function almost as well as the doctor. Mid level practitioners are a wonderful thing. Just be aware of who is in your team.

8. When new equipment is received what is the training procedure:  new technology is an incredible thing.  There is a laser device now that can help nurses find veins.  They are constantly upgrading monitors and machines.  I can view Maurice on an angel monitor from home and see him in the hospital by logging into an app. Just think about your cell phone and how much that has changed.  If you are a busy nurse or doctor and new equipment arrives .. you must be trained properly. This is not my opinion but rather standard of care.  Typically, the staff is trained prior and must “sign off” proving they have been educated on using it.  In my practice we even had a decreased patient load until we were all comfortable with any new equipment. This is very important.  Machines are great but become useless and dangerous when no one knows how to use them.

9. How often do they do “rounds” and are you allowed to join in .  Rounds are a time of review. Your team.. ideally everyone taking care of your child.. from nutrition, to the nurse and doctors all gather together and discuss results and progress and prepare a plan for the day.  Some hospitals do this once in the morning and again at night.  Some also allow parents to be a part of it.  For me this is essential.  I am the type of person that does well with all the information.  For some, this may also be very overwhelming.  I would encourage you .. no matter how difficult.. to participate in this.  It all sucks …every last part of it.. but do what you can to learn and make your presence known. Try your best .. even if it is just to meet the team members. Many facilities encourage this involvement and will be patient explaining things to you. (I will add a post explaining some of the common things discussed in rounds as a guide if you think might be helpful)

10. Visiting, security and hand washing.  Do you have visiting hours.  Who can visit and how many at a time.  If sibliglings can visit are there precautions to make sure they are not sick ? Do you check their temperature before entering.  Does security make sure everyone washed their hands before entering?

11.Private rooms.. this is something I never thought about. Private rooms are very very attractive. When I first saw it.. I loved it. But what makes more sense … to have your babies alone in rooms down a long hallway or to have all the beds close by so there is always someone near in case of emergency. After experiencing an emergency.. holding my baby alone in a room and watching him turn blue in my arms.. I can assure you having babies and nurses close by makes much more sense. Also in NICU Medicine .. nurses and doctors and always talking about “knowing your baby” .. not looking at the monitors and seeing them .. how they act. If everyone is close by all the nurses pass the babies often and get a sense of who they are. If you have a baby in a private room and the nurse taking care your child also has 4 other babies all in other rooms.. there in no way for the nurse to get to know your baby. There are significant limitations. If there are no private rooms ask about protocol if a baby is sick or in isolation.

12. Do they offer classes? Some NICUs offer free Cpr classes. Do they have Support groups? Is their anything for siblings? A child life specialist? Do they offer Pictures? As silly as it may seem .. pictures were very very important to me.. exactly how they were at that moment .. the tubes.. the wires .. it honored them. Some NICUs provide this service. I was blessed to have a dear friend offer it to me and she came in and photographed us. I know it may be one of the last things on your mind. I didn’t know how many days they would be with me after they were born. For weeks.. at any moment we could have lost them. Having these photographers and being able to look at them when I was away from them.. is something I will forever cherish.

13 Breast feeding support. Is there a Lactation consult? Do they offer donor milk to mothers who cannot produce enough breast milk on their own? Can you rent a machine from the hospital? Do they provide supplies for pumping … containers for storage etc ?

14 kangaroo care: do they encourage you to hold your baby. What do they have to help. One NICU had a model doll so you can practice lifting your baby out of the isolette. Another NiCU gave out shirts to help you hold them. I love my kangaroo shirt and it changed my kangaroo experience ! I will be offering them in my store soon!

15 Continuity of care: this I would highlight and Star a million times. Will you see the same doctor, or have a main nurse… who will “know your baby??” I know you will know your child well.. the way they cry when they are wet or the way the like to lay in the isolette.. even the color of their skin or if they are “puffy” another word used often to describe swelling or edema. I cannot tell you how many times I heard .. well, “your baby is new to me so I can’t tell if he’s “puffy”… or “I can’t judge if he’s sleepy”.. he just seems tired … how could you??  How could a nurse know your baby ..Or a doctor know if they keep changing .. week after week.. day after day.. meeting new people.. them “just watching”.. It is obvously impossible for the same doctor to treat you 24 hours a day.  What is done to ensure all doctors are “ on the sameness page”? Do they meet to discuss the babies each week?  My hospital now has all attendings meet once a week to discuss each child to ensure some continuity.  There are a few different ways to get from a to b and you want to make sure everyone who will be treating your baby is aware of the plan and agrees.  You never want to hear “I don’t know why that doctor would do that” or even worse no one knowing what a doctor because “ the doctor is on vacation and it is not documented correctly.”  Documentation is essential.  Also when caregivers keep changing .. all issues must be clearly defined. For example , if your child is having episodes which means they stop breathing.. it must be defined as “it is this many seconds and heart rate and breathing did this..”. Words like a little or a lot.. up and down…or seems to be ok…  these are opinions and have no place in medicine especially when there is no continuity. Make sure whoever is treating your baby knows your child and uses clearly defined numbers and medical terms when describing their behavior.  If you are in rounds and you hear these words.. ask for numbers… “Watching NICU babies” is another common theme and again make sure it is defined. You also want to ensure all practitioners follow the same guildlines. Policies and procedures within an institution should not differ and all physicians are mandated to follow them. For example if your baby received a blood transfusion.. what protocol is followed ..Do you full feed , trophic feed, no feed… many topics in medicine are very debatable and you want to ensure your facility is up on the latest research and that the doctors follow the protocols in place.

13 Mistakes: no one is perfect. This is true for nurses, doctors, Mother’s all of us.. things happen.. if something does not seem right.. question it!!!! It is again difficult to navigate through all the people.. but you can always ask to speak to a charge nurse.. or doctor or the director of the nicu if needed. Find out how they will handle it. It is very unfortunate .. but you must be your child’s advocate. In medicine there is a standard of care that MUST be followed. Issues such as documentation, following hospital protocols and competency of staff in using equipment as well as responding to emergencies are necessities. You have rights as a patient and if you are not satisfied with the level of care you are receiving.. you can leave!!

I know I am likely leaving out some things but please please comment if there is anything special about your NICU or any advice you could give other mothers. I can only pray our experience helps someone else. Us mamas have to stick together!

Day 60: Maurice’s First Ride

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

Hard to believe you have spent the first two months of your life inside a little plastic box. Mommy will always be here making sure you are safe and receiving the very best care possible. Stay strong my little miracle.