Written by Amanda and Steve Owens

Our NICU story

At 20 weeks we realized our journey to parenthood was going to look even more different than we had already planned for due to the global pandemic. During a routine ultrasound, the tech noted that our baby was very small. The doctor outlined the list of possible causes, all of which would mean additional possible complications. By week 23, after a barrage of tests, we got a diagnosis of IUGR.

While many pregnancies have a handful of ultrasounds across 9 months, that week we went to ultrasounds 3 times a week. In week 25, that then went up to 5 times. That Friday, on our way home from the 5th ultrasound that week and 11th ultrasound in 3 weeks, we got a call to turn back toward Boston. At week 26 Amanda was admitted to BIDMC’s ante-partum unit.

Over the next 4 weeks, Amanda was monitored throughout the day while working remotely from her hospital room and Steve would work remotely from our apartment then visit the hospital at night as we waited to see when we’d meet the baby. During that time we also met with NICU nurses to get an idea of what the NICU would be like, as everyone prepared for a baby that could decide to come at any time.

We knew there was no way to be fully prepared for the NICU, but we did our best to learn as much as we could. What would happen when he was born, what suggestions did they have, what was it going to be like?

At 30 weeks plus 1 day, the determination was made that it was time for Jack to come out. He weighed under 2 pounds (750 grams exactly) and was a little over 12 inches long, but came out with his eyes open and looking around at the whole production.

After a brief pause for a photo, Jack was whisked up to the NICU with Steve in tow.

We hadn’t had time to take baby classes before Jack was in the NICU, and we were first time parents who had never changed a diaper. We did not feel prepared, to say the least. The NICU nurses taught us everything. As stressful as the NICU was, having a team of skilled professionals by your side as you get through your first “he’s crying and I don’t know why” moment helps a lot.

We made sure we understood everything, asked questions, and soaked up any and all support the NICU had to offer. At first, we were afraid he wouldn’t know us. We couldn’t be there for him as much as we wanted to be. We kept showing up, and as we got more confident that feeling started to go away. We knew that him getting the care he needed came first.

When we first started having the conversations about the dangers Jack could have faced, it was very scary, but every day in the NICU, every small step of progress, things felt better. We could see this very tiny human getting bigger. He was still very much a preemie (did you know diapers have three sizes smaller than “newborn”?), but he was active and engaged.

By age 1 month (or minus-1), the Covid restrictions changed so he could meet some of his adoring fans, and his grandparents and aunts got a chance to briefly meet him.

As Jack learned to eat from a bottle, we started to look at getting him home. Amanda prepared to go back to work, and Steve prepared to take time off when Jack came home. The countdown to his homecoming was hard: trying to find the balance between us wanting him to come home and wanting to make sure he was ready.

Right after the 4th of July, Jack came home.

Being home with him was exciting and scary. We could finally really start our journey with him, but after months of him being regularly monitored by a team it was just on the two of us. Slowly, we all adjusted to being together.

Jack has been thriving and now that he’s crawling it’s easy to forget how small he was to start. Even longer NICU stays can feel like a whirlwind after the fact and once he came home the sprint ended and the marathon began.

Advice for parents experiencing the NICU

Be Kind to Yourself: this is long journey, and it stretches past the time they are actually in the NICU. Know that you are doing the best you can with the information and resources you have. They have a team looking after them, but there is no team for you, so make sure to take care of yourself.

Ask Questions/Take Notes: You have a team of professionals and they are to support you and your child-ask questions. If there is anything you want to know, they can help you. You can be your child’s best advocate and asking questions and taking notes can be your a great tool. They are an amazing resource, and information is power (even if it is sometimes scary).

Share Things You Love: they want to hear your voice and they don’t care what you’re saying, so tell them things you love. Tell them about their family, about their home, or about a park you love. At one point we were just reading wikipedia plot summaries of 90’s action movies to him and he loved it. And while it’ll be a while before he gets to watch some of those movies, our voices were some of the first ways we could bond with him.

Read more NICU experience stories here