Monday, May 7, 2012

Ichthyosis Awareness Month- Week Two: My NICU Experience

I’m sure every mother of a NICU infant will say it was a very INTENSE experience. I definitely had my concerns only being 30 weeks pregnant as I was admitted for pre-term labor of my first child. Being at Yale set my mind at ease a bit, knowing I was in good hands. Since we had suspicious ultrasounds, I wasn’t completely surprised this was happening.

When I arrived at the hospital the doctors said they wanted to ‘keep me pregnant’ until I was at 34 weeks. ‘Say what????? 34 weeks?????’ I didn’t think I would ever make it that long. The first night in the hospital was not fun. Not only did we receive a possible diagnosis of Harlequin Ichthyosis, but I had a ‘medical episode’ due to the magnesium sulfate I was being pumped with. For the next few days I was cut off from food and water due to steady contractions. A cesarean delivery was the only possible birth plan for our baby since he was breech the entire time I was at Yale.

On our third day at Yale, a meeting was being organized to talk about the diagnosis and possible premature birth of our baby. The meeting was arranged for 5:00pm and both of our parents were coming to the hospital to attend this meeting with us. Well, Evan decided to ‘join’ that meeting and was born at 4:56pm. His birth was not expected at that moment but since the doctors and nurses knew about his possible diagnosis, they had the proper care waiting for him once he was delivered.

Now, this meeting was focussed on what to expect for our baby’s future. I honestly cant remember hearing anyone say, ‘death’ or ‘might die’. I only remember hearing, “We have to make sure he DOES NOT get an infection.” I may have tuned out those frightening words or maybe not, since we had expert dermatologists there from the moment of his birth. I still did not understand what his skin condition was all about. The only question I thought of asking his dermatologist was “What about a cat and a dog?” I’m sure the meds from surgery were not helping me focus never mind the shock of just delivering my baby premature.

A few hours later we went down to Evan’s private NICU room. They rolled my bed right next to his Isolette and all I could see was his tummy going up and down because there were wires and tubes everywhere. His mouth was not visible due to the breathing tube and pads to protect his skin but I could see glimpses of his enflamed puffy lips. I could not see his eyes since they were covered with a moist cloth. I remember seeing a lot of bloody red cracks by his diaper area and at all of his joints. It felt like a dream and was hard to believe that my 30 week 5 day old baby was not in my belly.

The 10th floor is where I was in recovery, Evan was on the 4th. It was a strange feeling when people would say "Congratulations" to us. The nurses on the Postpartum floor did not know about Evan's situation though they knew he was in the 'New Born Special Care Unit'. I felt guilty for not being happy about having my first child and was somewhat offended when I heard "Congrats". Unfortunately, it was not the happy joyous occasion that most mothers experience with the birth of their first child. I did not get to hold my baby, feed or even touch my little boy. It was hard for me to to walk into the nursery on our floor (while storing my breast milk in the fridge) to see all of these healthy babies whose parents could come snatch them up to cuddle and care for them. It was really upsetting to look through the 'new mom' packets and seeing brochures for family photos that could be taken at the hospital. I really wanted to cry at that moment but wouldn't let myself because I wanted to stay strong. My husband was having a hard time so I knew one of us had to hold it together.

The morning after. They made me STAND UP less than 24 hrs after surgery. AHHHH

The next day, someone from the hospital came into our room with the birth certificate information. Evan's name was not planned since we had another name in mind. When this woman asked what his name was my husband and I looked at each other and realized we never thought about what to name him at that time. That night I researched some names and wanted to find something powerful because I knew he would survive. When I found Evan, it read "Young Warrior". I looked up at my husband and said, 'Evan'. And that was it. When my mother told my grandfather what we had chosen for a name he responded with, "Evan for Evalyn." Who was my grandmother and is my middle name. That instantly made me realize that my grandmother was already an angel protecting him and made his name even more powerful.

I was in the hospital for a week and we went down to Evan’s room every morning. The nurses and doctors were so wonderful, warm and friendly and kept my husband and I in the loop about EVERYTHING. We quickly became familiar with the medical lingo and were already helping with Evan’s skin care treatments and diaper changes. It was incredibly scary trying to avoid his umbilical lines (pretty much his lifeline) while doing these tasks since they had to replace them often due to the slippery Aquaphor.

A few days after Evan was born, the doctors were concerned with the very tight skin on his fingers. It was cutting off the circulation of his middle and ring finger on his right hand. The neonatologist and plastic surgeon mentioned an amputation might be the only solution. Fortunately Evan's dermatologists performed an 'experimental' procedure where they cut slits at each joint, in those fingers, to relieve the pressure and thankfully it worked.

It was a very sad day for us to leave the hospital without our boy. Again, I did not cry and remained strong but it was hard to see other mothers leaving with their brand new babies. Unfortunately we lived about 1 ½ hours away from Yale. It was hard to be so far away at night from our baby. Evan’s phone was ringing off the hook at night since I had to make sure things were going well. I couldn’t drive for the first month so friends and family would drive me down each morning. My husband would meet me there after work, stay for a few hours and then we would drive home. It became ‘normal’ for us to go see Evan in the NICU. I had a pretty habitual routine getting to Yale at around 9am each morning and running straight to the breast feeding room to pump (and every 3 hours). It’s weird to say this, but I enjoyed being there caring for Evan and 'hanging out' with his nurses.

Evan was extubated when he was a week old (probably thanks to those gigantic steroid shots they stuck into each of my legs). He progressed well and was shedding the thick plates of skin very quickly. He was put on an oral retinoid the first week of his life but it made him very sick and was immediately taken off of it. He was tube fed up until close to his discharge date. We introduced breast feeding to him when he was only 2 1/2  weeks old (33 week gestational age). He was tube fed at the same time as breast feeding and bottle feeding until he actually started to ‘take to them’.

Evan's first bath 3 weeks old

Evan 5 weeks old

My husband and I performed all of Evan’s skin care treatments and baths while we visited him in the NICU. His nurse wanted to make sure we were ‘properly trained’ and comfortable caring for his needs. Every day Evan was making huge gains in regards to his skin. It was comforting to know we had expert dermatologists who were monitoring his skin daily. We were also blessed with a nurse who cared for a colldian baby 18 years prior to Evan’s birth. She answered many of our questions regarding skin and premature babies.

We were on a roll and the word discharge was brought up when he was 6 weeks old. I was soooooooo excited we were even talking about Evan coming home. There was never a time where we got a negative or concerning report form the doctors until the day before Evan’s discharge meeting. I received that dreaded phone call as I was entering New Haven. Evan’s attending doctor said, “We have a few concerns that I need to talk to you about when you get here.”

Of course the next 4 miles I had to go seemed like 1,000. Evan had stopped eating from the bottle the night before and was put back on a feeding tube. He was also vomiting everything that was put into his belly and he seemed to be in a lot of pain. Evan’s Neonatologist said they were doing blood work to check for infection and getting ultrasounds to check his gut.  All day long we were waiting on the results. Luckily he did not have an infection but unfortunately had an incarcerated hernia and needed an emergency surgery to correct it.

Evan after his surgery 7 weeks old

This set Evan back about a week and a half. He quickly healed from surgery (due to his super fast growing skin) and stayed infection free. He was not allowed to bathe for a few days and missed about 4 baths. This is when I realized how fast the scale grew back. Places that looked great prior to surgery, were starting to look dark and thickened. Before his discharge, I stayed in the hospital for 3 days to exclusively breast feed Evan. We needed to be sure he would get enough calories, fluids and could maintain his sodium levels. Unfortunately breast feeding alone was not enough so I was told that I could only nurse him once a day. I was disappointed but the thought of Evan being home made everything better.

August 7th was a joyous day for our family. Finally we were bringing our baby boy home. I was impressed that with everything he went though he still came home 5 days before his actual due date. Since Evan was our first child we were anxious to spend some one-on-one time with him at home without any guests. We wanted to spoil ourselves for a few days and I’m so glad we did.

Finally home with his Mommy and Daddy

P.S. Don't worry I am human and cried about 5 times while writing and editing this :-p



  1. DeDe,
    You do a great job on this blog. Our jar is overflowing with change! It's exciting!
    Give Evan a squeeze.
    His Clay,

  2. I'm italian girl,i and my children have Vohwinkel syndrome with Ichthyosis .you are extraordinary and your little children it's very very warrior (warriors?)
    Sorry but i don't english very well.....:D
    Kiss Federica:D

  3. You're amazing and I really feel that your blog humanizes ichthyosis. Your boy is super cute and you're lucky to have each other. He's a gift from God.


  4. Loved reading your story. Amazing

  5. What an amazing jurney cried so meny times though reading this i think u are so strong and amazing as well as ur little man well done little worrier lots of hugs xxxxxxxxxxx

  6. I was only vaguely familiar with this disease prior to reading this blog. I am currently expecting and was googling pregnancy at my stage when I came across this. What an amazing story! So many people would choose to not parent, and instead would have terminated, with a disease such as this one. You did not, and I commend you!! As a mother of a child with a disability and a rare disease(Duchenne's Dystrophy) I know just how hard that decision can be. They want to do an amniocentesis if this one is a boy, but since I will not terminate either way, I have refused the procedure. I am currently undergoing carrier testing to see if another son is even at risk. This story has touched me in so many ways. Evan is beautiful, a God send and a blessing, and he has touched my life. Thank you so much!

  7. This was so touching to read and I am so proud and happy for you that you were able to make this journey with him and finally bring him home :) Evan looks a beautiful baby boy and I know this post was made a couple of years ago now, all I can say is I hope everything since then has been nothing but amazing for you with your gorgeous son and wish you all the best xx

  8. I just ran across your blog and I hope your baby is now doing well. He is so adorable =)