Written by Jennifer Scardino

Our NICU Experience

Our NICU journey started when I awoke one morning with a significant hemorrhage. Startled and terrified, I was rushed to the hospital at 28 weeks pregnant unsure if my husband would be able to join me due to Covid restrictions. While there, the doctors assured me that the baby was currently fine but that we would need to be transferred to a different hospital in order to receive appropriate care if our 28-week old son was to be born. My husband joined me in the second ambulance ride. Thankful he was able to do so and to be by my side at the hospital, especially as things took a turn for the worse and it was clear I would need an emergency c section. I so vividly remember the neonatologist that day explaining all of the possible things our son might be up against after birth. I was scared. Scared of the unknown. Scared to even see my tiny baby. Just hoping for the best but understanding that we were going to be embarking on a very long, unpredictable and emotional journey. Moments after our conversation with the neonatologist, our son Theodore “Theo” was born weighing 2lbs. 13oz. I was so happy to hear his cry as I saw him for just a few seconds. Thankful for the memory as the next few hours I was physically unable to see him. Finally after starting to feel better and getting some strength back the next morning, I saw my son. As I put my hand in his isolette he held out his hand and held my finger. Such a wave of emotions. Grateful that he was alive, as I fully understood that it was a gift, but sad to see my baby that I had envisioned carrying to term so small and fragile. The next 77 days were an amazing rollercoaster of emotions. They say you ride the NICU rollercoaster and it’s so true. From having to leave him when I got discharged to our first time being able to hold Theo to his weaning off of oxygen and CPAP to his first bottle. Every day being a high or low on his road to coming home. While in the nicu, Theo faced many challenges regarding his prematurity, he needed breathing support, would have many spells, and his GI system was compromised which led to some stressful days. Eventually around two and a half months old he became stable with his breathing, spelling episodes and started to consistently gain weight so he could come home. I am forever grateful to the amazing nurses and doctors who cared for Theo. The nurses on his team truly became special friends to us. I never envisioned what a huge impact they would have on our entire experience and really our lives. They were always reassuring and caring for Theo but also for us as parents. They knew when the days were hard and we needed extra reassurance and they celebrated his victories with us like his first bath and bottle.

What I wish I had known

Nothing quite prepares you seeing your child in such a fragile state. One of the nurses in the postpartum unit told me that everything was going to be ok. That it would be a journey but that babies are strong. I was too overwhelmed after delivery to find reassurance in that message but what ended up reassuring me the most was asking many questions of the nurses and doctors each day to better understand Theo. I was worried that I wouldn’t be able to bond and understand Theo like I did my first but we truly did develop a bond. A somewhat different experience than with our first child, but our rollercoaster journey led us to create a very special bond. I also now see that in the moments of fragility, there was so much strength and resilience.

Advice to NICU parents

The hardest part in our NICU journey was having to leave Theo each day, especially on days where he was sick and fragile, but knowing he was in such great hands and of those who really cared for him made all the difference. We did get into a routine which was so helpful as we had our then eleven month old at home. She was a wonderful distraction amidst the beeping of NICU alarms that I would so frequently still hear in my head after spending the day with Theo.  We also had tremendous support from family and friends. We truly wouldn’t have been able to spend as much time with both of our children if it were not for all the help we had. For any future NICU parents I would say to feel comfortable to talk to the nurses and doctors, ask any questions and find reassurance in their knowledge and support, especially in the first days of your baby’s life. Lean on the support from family and friends. It may be tough given the current pandemic but even in conversations you may have with a friend or neighbor. And, celebrate the small victories. For many, the NICU life is not something that is planned but I think it’s helpful that in the long days and weeks to just try to be present, soaking up the snuggles and recognizing that each day will bring its challenges and/or joys.
Looking forward to seeing all the images!!
Best,
Jen

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