The Mighty Logo

5 Things I Would Do Differently as a NICU Mom

The most helpful emails in health
Browse our free newsletters

It’s been over three years since my twins were discharged from their six-week stay in the NICU. I’m no longer recovering from pregnancy and the subsequent surgery. My babies are no longer an hour away from my house. My feet no longer look like water balloons. I’ve had time to reflect on my experience.

So, for what it’s worth, if I could do it all again, here are five things I would do differently:

1. I would fight to hold them more.

It seemed like a daunting task, holding those babies. There were so many wires. There wasn’t a lot of space. The three recliners they had for the entire room were already being used. Some days it seemed like it wasn’t worth the trouble to get them out of their cozy little boxes. Of course I did everything I could to hold them, but if I had the chance to go back in time, I would fight harder to make sure the process was easier. I would set up a plan with a patient advocate. I would let them know I need a recliner every time I visit. I would let them know I expect to hold them for as long as possible while I rest, and encourage them to assign a nurse who was “on-board” with that plan. Oh… If I could do it again!

2. I would find a Facebook support group before I had those babies.

I found an amazing group for mothers of multiples after I left the NICU. If I could do it all again, I would find that group while I was pregnant. How helpful it would be to ask a question about my preemie babies and have 60 responses from moms who have already been in my shoes!


3. I would take more pictures.

It seemed wrong to snap shots of my babies while they looked so sick, so pitiful. I remember thinking, “I never want to see this again. It’s too painful.” Fast-forward three years, and all I have are a handful of shots I took while I was holding them. Luckily, my mother took a few while I wasn’t looking. (Thanks, Mom!) I wish I could look back on how far they’ve come now that the sting of the NICU has worn off.

4. I would keep a journal.

No… not a long, deep, thoughtful journal. Just a few notes about what happened each day. I would write down important diagnoses, decisions or struggles, who I met with, or my favorite nurse’s name. It’s hard to remember those things after the whirlwind is over.

5. I would have a better plan in place for my older kids.

That seems simple enough, but I wasn’t expecting those babies to come so early. My pregnancy was relatively easy, no major issues except for the fact there were two babies. Who knew I would be spending the next six weeks traveling back and forth to the NICU over an hour away?

If I could go back in time, I would have made a plan. The world didn’t stop just because my babies were sick. My other kids still had to go to school and practices. They still had to eat, take baths and get dressed. Of course my husband did his best, and our family helped out. But six weeks is a long time.

*I’m revising number five to say I would have cloned myself.

NICU life isn’t easy, but I am thankful every day my babies made it through.

Follow this Journey at Not an Autism Mom

We want to hear your story. Become a Mighty contributor here.

Originally published: August 1, 2017
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