Written by Kristina Williams

My NICU Story

As I sit here writing this post, I am watching my daughter on the camera drift off to sleep. She is currently 13 months old. She just learned to stand a few weeks ago; as well as walk along the edge of the couch so now that’s all she wants to do. She is about 20 lbs. and loves to eat, she’s intrigued by everything around her, and she is as my husband and I say an “easy baby”. She also is our miracle baby. She was born at 24 weeks and 2 days and spent 115 days in the Beth Israel NICU. Oh, what a difference a year makes. Last year at this time we were about a month and half into her stay, and still had a long road ahead of us. This year she is surpassing expectations both in her health, and in her development. She is absolutely amazing.

My husband and I got married in September 2018 and we wanted to start a family right away. Lucky for us I got pregnant very quickly. The first trimester flew by and I was having a “normal pregnancy”. Everything seemed fine. My second trimester started, and I was breezing along. I felt great, and my bump was starting to show. I went in for my halfway ultrasound at 20 weeks and “Baby W” was measuring nicely. My husband and I had decided we had wanted to be surprised about the gender of our baby. Ultrasound went great, right up until the last five minutes. I was told my cervix looked a little short; and that I should come back in the next week to have another ultrasound just in case this was an inaccurate reading. Now I was completely ignorant and had no idea how important a cervix length is, turns out it’s pretty important! A week later, at 21 weeks I show up for another ultrasound and everything drastically changed. What started out as a normal pregnancy turned into a high-risk pregnancy, where baby could come at any time. I was told to go to the hospital for emergency surgery to have a cerclage put in which basically is a stitch for your cervix. 21 weeks, and they could see my baby’s head. The cerclage was able to keep my baby in for 3 weeks. Unfortunately, during my surgery, some of the membrane had descended so it was only a matter of time. My water ultimately broke on a Monday at 23 weeks and 6 days. My baby was able to stay in until Friday. After a long week of labor, physical and emotional stress, worries and prayers, my daughter was born.

Kathryn Reagan was born on April 19^th, 2019 (Good Friday) at 10:22 pm.  She weighed 1 lb. 7 oz and she was 12.2 inches long. When I delivered her, there were about 15 people in the delivery room. My husband compared the NICU team to the “Nascar Pit Crew” where each person had a unique job. One job someone even had was to squeeze the breathing apparatus for my daughter. In and out. In and out. Kathryn was wrapped in plastic and covered in about 5 hospital blankets to keep her warm. I was able to hold my daughter for about 1 minute, just long enough for a few pictures. Then she was whisked away. And from there our NICU journey began.

Two days later, on Easter Sunday I was able to do skin to skin (or kangaroo care) with Kathryn for the first time. In order for this to happen, we needed 2 nurses, and a respiratory therapist present to handle the transferring of Kathryn out of her incubator into my arms. I was allowed to hold her for 30 minutes and then she had to be put back. I am forever grateful for those 30 minutes. Those 30 minutes led into 60 minutes, and then 90 minutes, and then 3 hours as the days went on. Holding Kathryn during skin to skin was the best part of my day.

The NICU is amazing, and the people that work in a NICU are angels on earth. Kathryn needed to grow, and in order to do that she needed to sleep. So, for the first couple of months, Kathryn could only come out during her “care times”. These care times were every 3 hours and my husband and I were encouraged to participate, which we gladly and eagerly wanted to do. We learned to change her diaper as she was in the incubator all the while not to destruct any of the wires that were attached to Kathryn. We took her temperature. We inserted my milk that I had pumped through her feeding tube. And as she progressed and grew, we were able to clothe her (big deal in the NICU!) and feed her with a bottle.  Eventually she moved out of the incubator and into a crib. Care times meant the world to us. When you can’t be with your baby full time, you relish any moment you can get. It was so hard leaving her every night, but we could call the NICU any time we wanted. Shout out to the nurses who answered my calls at 3am during my pumping sessions…or again at 4am when I couldn’t sleep!

Overall, Kathryn was fairly healthy during her NICU stay. One nurse even nicknamed her the “Rockstar of the NICU” because of how well she progressed. She was on a breathing tube for 56 days and as a result has chronic lung disease.  She also had heart surgery when she was 1 month old (or 28 weeks gestational). We were told she may take a while to recover and to expect things to get worse before they got better. She amazed everyone with a fast recovery with no complications! Because of her chronic lung disease, when we brought Kathryn home, she needed to be on oxygen 24 hours. She also needed to be on a feeding tube because she had been silently aspirating causing fluid to go into her lungs. We brought her home 5 days after her due date on August 12, and just about 10 months later, Kathryn is free of all tubes! Even though she was pretty healthy, those 115 days were long days. Long days of seeing your child hooked up to so many wires. Long days of watching her struggle to breathe at times and need interference from a doctor, nurse or respiratory therapist. Long days of just waiting.  Long days of commuting back and forth to the city, about an hour each way. But those long days are what kept us going. My husband and I made a pact we would always be happy and cheerful when we were around Kathryn because I am a strong believer that she picked up on our feelings. There were times where we felt lonely, depressed, scared and anxious but we saved those feelings for outside of the hospital.

Kathryn’s stay in the NICU has forever changed both myself and my husband. We were still newlyweds during this experience, but we grew closer as a couple.  We learned to never take anything for granted, to appreciate life, and to be grateful. Our miracle baby taught us so much in the 13 months she has been here.

Is there anything I wish I had known prior to our NICU experience?

In my case, the significance of a cervix size 

But in all seriousness, honestly, I don’t think I would change what I knew then vs what I know now. People can tell you what the NICU will be like and what to expect, but until you are actually living through it, you can never truly understand what will happen. And every child’s journey is different. There is no “cookie cutter” guide to a NICU stay.

My advice to anyone who has to endure a NICU/Special Care stay (or even a hospital stay):

Take care of yourself, physically, mentally and emotionally.  Mom and Dad need to be healthy not only for their child, but for themselves! Advocate for your child. Ask questions, the doctors and nurses can’t read your mind so speak up if you are feeling any uncertainty about anything. Take one hour, not day, but hour at a time. Try to engage with other parents, they are going through the same thing as you and it may help to find others who are enduring similar experiences.  And never blame yourself. It is far too easy to go down that road. Embrace the unknown, hope for the best, and know you are never alone if you have to go through this experience