Five Things I Wish I Would’ve Known About Post-NICU Motherhood

May 7, 2014
My preemie gives his sibling-to-be a kiss.

My preemie gives his sibling-to-be a kiss.

I’m the mom of six—teenager to newborn. No, I’m not certifiably crazy, but there are days I wonder.

Two of my children were born premature. One skated home two days after delivery with zero problems, the other? Well, a 44-day NICU stay, seven surgeries, countless therapists and specialists and a very scary touch-and-go surgical case of necrotizing enterocolitis later, I’m a different mom.

I often measure my motherhood years as pre-NICU and post-NICU. I’ve finally learned the one universal truth of NICU moms: we’re all just faking it.

Some Facebook statuses should not be read. You know the one where your girlfriend whines because her kid has to get ear tubes or your best friend shows off her fancy labor and delivery gown? Yeah, those sting. I wanted to yell, “try brain surgery” or, “if only my biggest worry was what I was wearing during labor and delivery.” And then I remember the living hell we endured. The monitors, the specialist visits, the late night calls from the NICU, the 4am pumping sessions and the scars on my sweet boy’s hands from all the PICC lines. I don’t wish that on any mom. So, while I yearn for others to have perspective, I recognize that mine was hard fought. In short? We all have a cross to bear. There’s no competition for worst birthing story.

Never pay the first medical bill you receive from a doctor or hospital. After spending a half hour or more on the phone, I shudder to think how many times I’ve heard, “Oh, that was a billing error. Just disregard the bill.” Lessons learned? Let the insurance claims sort themselves out. Don’t be scared when a billing office says they’re sending you to collections if you fail to pay within 30 days (it’s often a scare tactic to get you to fork over money). Never talk to the first billing person that answers the phone, you’ll just end up repeating yourself to the supervisor. And, by all means ask for a discount if you pay in full!

Let other kids be your inspiration, not your comparison. We spend our days trying to get our kids to achieve developmental milestones as quickly as possible. Is this therapist, or that one, better? This toy, this activity, this outing will all make my child “normal.” And, when our kids struggle, we find ourselves in a dark corner with a Kleenex. Never pretty. In the early days, I obsessed over the growth chart, searched Dr. Google for answers, stalked Facebook support groups and found myself in awe of other preemie moms I knew who seemed to have it all together (all while their NICU baby met milestone after milestone). I’ve learned to play up, to surround myself with strong preemie moms who get it. In my darkest days as a mom, the best thing I can do is call a NICU mom and get practical advice, not wallow in self-pity about my failures and my child’s struggles.

You have a life. And it doesn’t always include your kid. Before I entered the NICU, I loved designing, decorating and making things pretty. When our youngest was born premature, it was my God moment. Life was automatically reprioritized and I finally realized I could jump on the train or cry at the station. I chose the adventure. I’m learning to cultivate my own gifts and in doing so, it’s helped me see the beauty of motherhood and weather her challenges. If all you do is live life for your child, you forget about the beauty of your own. Go on that girls’ night out, see a movie with your spouse, go get yourself a pedicure, join that fitness class. Life should be about living, not waiting for the next shoe to drop.

You’re doing enough. As much as I love my son’s specialists—all 12 of them—I sometimes leave their offices feeling dejected. I worry that if we don’t do this therapy, enroll in this outpatient clinic or run this test, I will have failed my child. And you know what? I’ve learned to trust my instinct. To lean on my love. I’ve learned to tune out the extraneous and hone in on the things that matter. My protective momma bear instinct has never failed me. I’ve pushed, asked and questioned when needed and I’ve ignored, nodded and moved on when necessary. In the end, it’s how much we choose to love, despite the odds, that makes all the difference.

Happy Mother’s Day!