When Friends & Family Just Don’t Get the NICU

December 16, 2013

preemie powerI still tense up when someone who’s pregnant says, “Oh, I hope I go early. I can’t stand to be pregnant one more day.”

It’s hard to attend baby showers. I dread the inevitable “sharing your birth story.”

When a friend freaks out because her child is getting ear tubes, I want to shout: try brain surgery.

Then there’s the link on Facebook that shows off all-the-rage chevron print gowns. I mean, as if I was thinking about what I was wearing during our preemie’s delivery.

And then I remember: I wouldn’t wish a NICU stay on my worst enemy.

It’s just, perspective. We’ve lived a thousand lives since September 18, 2009. And, there were times during our 44-day NICU stay that I really wanted to shout out, “DON’T YOU GET IT?’ to friends and family.

The thing was, they didn’t.

For our son’s first two weeks of life, I never left the hospital. I “roomed in” in the antepartum and NICU parent rooms. I was either a short elevator ride or a quick twenty-three steps away from his bedside. The day he was extubated, I got kicked out of my room and told I needed to sleep in my own bed at home. Because my husband was shuttling our four other children to various activities, I called on my brother and his wife to pick me up and take me home.

Looking back, I should’ve found other driving arrangements. A few minutes before my brother arrived, he informed me that they had two friends along. All four of them had just left a birthing class at the hospital. That’s right, I would be spending the next 30 minutes with two very pregnant women and their husbands – all of whom were ecstatic to be carrying their first child. My fragile emotional state was nearly tipped to the crazy side when they arrived. I begged the nurses to tell my family that they were starting an IV so I didn’t have to bring anyone back to our son’s bedside. I just couldn’t put on the happy face. They were enjoying everything we wanted to experience and I was living a nightmare. Those were two worlds that did not need to collide.

Or, there was the baby shower that my mom wanted me to attend while our son, Luke, was still in the NICU. Instead, I went to my daughter’s soccer game and talked to no one. I just watched her play, then cried as I drove back to the NICU to sit at Luke’s bedside.

It was this surreal out-of-body experience every day we were hospitalized, both during the initial NICU stay and subsequent nine hospital stays later. The world hummed along outside. People went to work. Complained about trivial things on Facebook. Changed the oil in their car. Had dinner with their families. And, from 11pm-8am, I lived in that world. But, during the day, my world was wrapped up in NICU lingo.

Neonatologist rounds.

Consults with specialists.


PICC lines.

Constant monitor watching.

None of those things were understood by people on the outside.

I was expected to be present at both places, to be a mom to all my children, to make lunches, bathe cute bottoms and shuttle them off to school, all while we prayed as our son fought for his life in the neonatal intensive care unit.

It was exhausting. And I found little reprieve by talking to family and friends, except those who had been in the NICU before. But, that crowd was amazingly small. Then, I discovered Hand to Hold, the parent non-profit who makes PreemieBabies101 possible. When I talked to my mentor I told her more in 30 minutes than I had told my family in weeks. It was liberating and empowering and healing. I discovered the many resources, got connected with other preemie parents (both in real life and online) and finally found my voice. As we have navigated therapy and specialists in our “life after the NICU” I have found that the advice garnered from this community to be invaluable.

We have a local preemie moms group in my area that gathers once a month and we all chuckle about birthing gowns, ear tubes, our growing lists of specialists and baby showers. Nobody has to apologize because we all get it. I hope that PreemieBabies101 can become your resource for parents who get it. After all, if there’s one lesson I’ve learned because of our son’s prematurity, it is the importance of community.

Let us be yours.