Honoring the Micro Preemie Journey

July 1, 2019

I remember the text. The terrifying message my friend on the other side of the country sent about a helicopter ride to a Level III NICU with her just-born, in-critical-condition micro preemie. I knew I wanted to be a support who “got it” and could provide tangible empathy, but I’d had no experience doing so and only my own birth experience and the aftermath to go on. Ironically, her son was born just shy of my micro preemies’ third birthday – – and I was at an Early Intervention conference when I heard the news.

When my micro preemies were born, I hadn’t known anyone with super-preemie babies. I hadn’t even known anyone who’d been on hospitalized bedrest. None of my friends who’d become parents recently had children with any special needs, medical or otherwise… at least that I was aware of.  I was incredibly terrified and felt alone in many ways. I had lots of strange sympathy and cautious support, but no one who could empathize.

I wanted to be that person who could empathize, who sincerely knew what she was going through, even as every situation is uniquely its own.

I didn’t know what was best. I concentrated on listening and tried to remember all the things I had felt were different about having a micro preemie.

I congratulated her on her son’s birth and welcomed him to the world. Few had done that for us.

She said she’d been wanting to talk with me because she thought I could understand the overwhelm. I listened and answered any questions I could. I certainly had wanted to talk with someone who got the sheer magnitude of the situation.

She sent a picture and I gushed – and also commented on the feeding tube and how feisty my daughter had been, always pulling it out. I mentioned how I had noticed he wasn’t on any breathing support days after his very early arrival. She wrote back saying her son was feisty too. Such a NICU descriptor!

I acknowledged Mother’s Day – five days after her super-fragile son was born.

One week in I sent a NICU package of things I would have wanted: snacks, a preemie outfit all his own for when clothes were allowed, a preemie reference book for deciphering all the NICU jargon and acronyms, and a hand-held mirror. The mirror was amazing, she wrote, now I can see him when we do skin-to-skin!

I checked in every few days with a short message – and didn’t leave the burden to her about reaching out or sending updates

I used preemie language. He’s 30 weeks today – and 1 week old!

We talked about weight gain and extra calories and pumping and reflux and As and Bs.

We talked about the day he might get out of the isolet or be feeding on demand.

We talked about how this whole thing was starting to get “normal.”

We talked about frustrations living out of a suitcase and far from home to be at the NICU – and far from her older son. Of this, I had no experience. I listened.

Breathing setbacks.

Car seat tests.

Consistent feedings.

Watching other babies go home.

Wanting to go home more than anything.

Being extremely nervous about going home. At home there are no 24-hour clinicians and machine output assurances, or warnings.

Being giddy over “no alarms recently.”

Feeding tube out. On demand feeding!

Finally she wrote, I am supposedly going home tomorrow. And, finally, she did.

Our conversations continued. Worries over breathing and eating and growing. Early Intervention visits. Uncertainty about his needs being met. Different health system approaches at the NICU and home. The joy of watching him do “normal” baby things.

And then his first birthday arrived and we talked about Gotcha Day and the “normalcy” of parenting former micro preemies.

I hadn’t had a friend who shared my micro preemie experience. I hoped that being a friend who’d shared that experience made it just a bit little less lonely and terrifying for her.

Are you a former NICU parent who wants to help families in need of emotional support? Sign up to become a volunteer peer mentor today!

In our award-winning Peer Mentor program, we match NICU graduate parents with families in need of emotional support before, during, and after a NICU stay or the loss of a baby. Mentors are given the tools and training they need to be confident to support families in their journey.