The Mighty Logo

4 Reasons I'm Glad We Braved the NICU Reunion

The most helpful emails in health
Browse our free newsletters

Not long after our son was discharged from the hospital after his short NICU stay, I received a little card in the mail inviting us to attend an annual NICU reunion. I didn’t give it too much thought in the middle of our busy life and quickly scribbled off a yes and slipped the RSVP back in the mail. I jotted a note on my calendar and didn’t think about it again.

Then over the course of the next few months, life with our son changed a little bit. We had reached a new point, and I felt like we had gotten past all of those “preemie problems.”

Except apparently we hadn’t. Feeding became a big issue, we started seeing some specialists we hadn’t even needed in the NICU, and it became apparent that a more medically involved path was going to be our reality. I felt like we were going backwards and the rest of the world was moving in an entirely different dimension than I was. Rare diseases and lifelong struggles were brandished around, discussed, discounted, and returned to.

We still don’t really know, but the point is the NICU reunion went from a fun way to show off what a perfect big boy my son has gotten to be to one more reason to visit the hospital. One more appointment. One more thing that reminded me our baby experience was anything other than “normal.”

The day arrived, and I literally crawled in my bed fully dressed almost in tears not knowing what to do. I had this feeling like I needed to go, like it was somehow an important thing to do, but I didn’t want to be in a big crowd of people. I didn’t want to spend more time at the hospital. We had been running for weeks, and I just wanted a break.

And then we went anyway, and I could not be more grateful we did. Here are four reasons I’m glad we braved the NICU reunion:

1. Validation. Sometimes I can hardly even believe the rough start my son had in life, how much he has gone through and how hard we have all worked to get where we are. As I walked down the table and picked up each of the beads that my son earned during his NICU stay, I felt a strange awareness of it. This was real, and we survived it. I need to hear that, particularly when I’m wondering at times if we will survive the new challenges we face.

2. Camaraderie. In 13 years of parenting, I have never had as many dirty looks and comments about feeding my babies as I have in the time since I started bottle feeding my son. It seems everyone has an opinion or answer to solve our breastfeeding failures. And yet, I have come to see our breastfeeding story as one of success. We made it a long time battling some really complicated stuff. When people give me looks or make comments about my cart full of expensive hypoallergenic formula I am reminded our story is not deemed successful by traditional standards. But at the NICU reunion? No one cared. Babies were breastfed, babies were bottle fed, babies were tube fed, babies had central lines. Conversations continued around the feeding of babies in a variety of ways. We discussed follow up appointments, developmental milestones, and favorite specialists. No comparing, no judging. No one asked about his size or if he was (talking, walking, etc.) yet. Just understanding.

3. Memories. We did an art project, played with instruments, and more. It was kind of like a baby and me class  he’d never been able to go to before. Sometimes it is easy to leave out the fun stuff in the midst of all the hectic, but making good memories is important even during challenging times.

4. Hope. According to the first invitation we received, we will continue to receive a new invitation for each of the next five years. Looking around, I found myself humbled to be surrounded by a courtyard full of kids who had hard starts like my son. They were laughing, playing children just like any other. Even those who clearly have continued to have struggles. I needed to see that. I needed to know we are going to figure all of this out and that our son’s future is bright.

Originally published: September 2, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home