When Your NICU Story Isn't About the 'Incredible' Accomplishments or Challenges

Sharing your NICU story can be a tricky one. I could go for the easiest description:

My pregnancy had lots of bleeding. I went into labour at 27 weeks and 6 days, and I gave birth at 29 weeks. He was in NICU for 9 weeks and then came home. He’s been amazing since he’s been home.

That’s probably the most commonly shared story you hear of, right? That or the media story of “She’s been on oxygen since she came home after being born at 23 weeks.” The reality is that there is a hazy middle ground of this all. You can’t really share every last detail of the NICU journey — which includes the lead up and being at home after. For me, that journey included surgeries to get pregnant, infertility, questioning if I’d ever be a mom, and eventually, seeing that positive double line. You can’t share every moment of pregnancy. That included hemorrhages, leaking waters at 17 weeks. Thinking I’d lost him, time and time again.

Going into labour — or the birth or near birth experience for some — can be nothing like labour at term. It’s filled with anxiety, panic and somehow — for me — the tension and struggle between anger at God and still trusting him.

It’s not remembering anything other than trying to hold a gown over your boobs as you peered over the edge of the bed awkwardly to see your ventilated son for the first time. I only remember the gown and boobs bit — the rest is just filled in with photos. It’s counting nappy weights and grams and oxygen percentages coming through CPAP. It’s knowing you have control over none of that. There is a doctor, a nurse, a milk assistant controlling all these things, and you have to work out how to be Mom. It’s stopping cuddling him at 4 weeks old because he kept stopping breathing when you cuddled him. It’s the hormones of a new mom and the drama of having your number one love attached to wires, tubes and IV’s in an intensive care unit. And yet, it’s having it become normal. 

Then a time later, they get home. And then come the waves of not knowing what to do, the same as getting home with a term baby. But things are medicalized. Your first thought when he’s screaming probably isn’t, “He has a sore tummy.” It might be, “Is his hernia strangulated?” When he’s not rolling at so many months old, you may start to assess the rest of his development to ensure it is on track, because you were told they don’t know how his development will go because of the brain damage he has. And it’s not being told about that until a discharge meeting at 7 weeks old. It’s when he’s 2, and you’ll be going to a weekly program to help his development for about 10 weeks to catch him up. And it’s when he’s 4 and a half, still in that weekly program, getting the suggestion that you hold off school for a bit so they can work with him longer. It’s all those things. They take time for your head to comprehend, and to accept.

This is the stuff that is left for a NICU family. It’s the stuff in the middle. Not the stuff so “incredible” that it demands media attention. It’s not the accomplishments shared so readily on Facebook. It’s not even the heart-stopping challenges that require talking with a professional. It’s the day by day differences. The stuff in the middle.

A version of this post first appeared on Nipenda — Life + Love.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.