To the Moms in the NICU: Find Your People

I was admitted to the “high risk” pregnancy unit and spent two weeks there before my son was born by crash C-section. I was on pretty strict bed-rest, and although I took that seriously, doctors encouraged me to leave my room and shuffle through the halls when I was feeling listless. I considered it, but every time I pep-talked myself into almost walking out that door, I found a good excuse not to.

Looking back, I realize I was depressed and doing a really good job of isolating myself. I remember hearing other moms-to-be in the hall introducing themselves, sharing details about how they ended up there, and giving each other updates about other mothers and babies who had recently had pre-term births. I was scared, and after 30+ years of trying to micromanage every detail of my life, I was thrust into a situation that was completely out of my control.

I found myself in the same spot when my son arrived, just in a different unit, on a different floor. I’d sit helplessly at his bedside while I listened quietly to other mothers share their stories with each other and confide in each other about new milestones and stressful setbacks. We spent 127 days in the NICU, and the first 60 I spent completely isolated, finding new excuses about why I wasn’t ready to venture beyond the four walls of my son’s hospital room. In my defense, he was listed “critical” for the first two months of his life — which left me feeling like every second I had was better spent with him than anywhere else.

Eventually, the fog slowly started to lift. After two months, he was growing more regularly, he’d come off the vent, and his spells had started to decrease. There are no guarantees in the NICU, but for the first time, I let myself believe he might make it out alive.

I left my son’s room — and guess what happened? I found my people; the ones who “get it.” I found the ones who I know now will be life-long friends. The ones who understand the fragility of life inside that unit.

I found parents who understood things like: apneic spells, CO2 requirements, code pinks, bradycardias and tachycardias. I met families that understood why comments like “relax, it’s good for his immune system” make my skin crawl to this day.

Today, three years later, they are my rock, my people, my home slices. They are the ones who understand my shock and awe when I hold full-term babies for the first time and talk about how gigantic they are. They’re the ones who tell me I’m not being irrational when three years after discharge, I’m still barking at house guests to wash their hands when they walk into my home. They are the ones who talk me through keeping it together every time my son gets a fever or respiratory infection. They were the first ones to share in the early milestones of my son’s life, and today they’re the first ones I run to when it all seems too hard.

Growing up, my dad used to tell me to choose my friends based who I’d take to war. It was a powerful metaphor that has stuck with me through the years. The NICU reverse engineered that advice. Now, they are my friends because we’ve already been to “war” and there is nobody in the world who understands the NICU battle better than the ones who have stood next to their warriors and fought it bravely.

Find them. That’s what I’m saying. Find your people or your person. If you can’t bring yourself to find them while you’re in the NICU (I feel you), find them later. There are so many incredible support groups online for parents of premature and medically complex children, and they, too, are filled with your people — the ones who are fighting the same battles.