NICU Experience Series: 7th Guest

NICU Experience


Our NICU Story

At 27 weeks pregnant, my husband and I hopped on a plane to visit my family outside of Atlanta, Georgia. It was 4th of July weekend, and I remember sitting in a lawn chair, watching fireworks and feeling my little boy kick enthusiastically during the first few loud booms. The next day was my baby shower.  Guests arrived. It was summer in Georgia so we drank a lot of lemonade, and I was pregnant so it wasn’t so strange when I had to run to the bathroom not once but twice.  But something wasn’t right.  It was too much to be urine. My aunt is a nurse. She told us to go to the hospital.  Test were run. My water had broken.  More tests.  An ambulance ride to a bigger hospital with the nicest EMT. Maybe we would be ok. One night, two nights, three nights. On the fourth night it became clear that I was in labor. At the same time we discovered that the stress of four days in the high risk maternity ward had led to a tiny shingles outbreak on my neck. My son was born and whisked away, and because I was contagious, I was quarantined far away from the NICU. I was discharged two days later not knowing when I would be allowed to return. After 8 long days, I received medical clearance and was able to see and hold my son for the first time. What was supposed to be a weekend away ended up being a three month stay, commuting 45 minutes every day from my parents’ home to the large hospital outside of Atlanta where my son was staying. Days turned into weeks, summer gave way to fall, and after what felt like an eternity, my tiny not-quite-yet 6 pound son was allowed to come home, although getting him there would be a challenge. We spent the first two weeks after his discharge at my parents’ house getting settled and adjusting to caring for our son without the guidance and supervision of a full medical staff.  After the sterility of the hospital, the flight home was nerve wracking and we disinfected every surface we came into contact with.  We had planned to move into a new home in late July and had thought we would have plenty of time to get settled; instead, my husband had flown home alone and in one long, feverish weekend he had packed up our entire apartment and moved everything to our new house.  He hadn’t had time to unpack however, so we returned home to a house that I’d never lived in, littered with haphazardly packed boxes and strewn with furniture. It was hardly the homecoming we had imagined months earlier, but we were too relieved to care.  Our family of three was finally home.

boy holds umbrella in the snow in Natick Massachusetts during family photo session
Mom kisses son holding umbrella in the snow during family photo session in Natick Massachusetts for NICU blog

What I wish I had known about the NICU

While my son was still in the hospital, I wondered how we would ever move past this experience.  I wanted to put it all behind me, but it seemed hard to imagine ever actually leaving the NICU, not just physically but also in a deeper, emotional sense.  As my son has grown, the NICU experience has seemed to just drift farther and farther away on its own.  This is in part because as my son has grown, he has added to aspects of his identity.  He’s not just a former-28 week preemie anymore.  Now he’s a gymnast, a preschooler, a Forest Gnome, a brother, a grandson, a nephew, a best friend, a neighbor, a musician, a helper, a builder, and so much more.  He knows about his birth story.  He knows he needed tubes and doctors when he was little.  He knows of quite a few friends who also needed those things when they were born, but he also knows his sister, who was full term, didn’t.  So I think, even though he doesn’t remember the NICU, and even as it gets to be a tinier and tinier part of our lives, his premature birth will continue to be a part of his life story.  And it’s a part he can be proud of and feel good about.  When my son was a young toddler, I would take him to parks or to the library, and I was always a bit startled to find that he was perfectly comfortable asking a stranger for a boost up the ladder or for a book on a high shelf.  He was certainly very social, but what struck me was his confidence that everyone he encountered was there to help him.  Maybe it’s not so surprising, though.  After all, he spent the first two months of his life surrounded by a never-ending parade of strangers who cared for him day and night! When he turned two, the medical opinion seemed to be unanimous that he was “all caught up,” but I always disliked this attitude. There will never be a day when we can say he should have been born in July instead of October. There will never be a day when all of our struggles and all of the pain of the NICU will simply vanish. He will always be a preemie and as his mother, I will continue to see that, not as the whole of who he is, but as one tiny and beautiful part of what comprises him.

Family smiles at each other for photographer during family photos in the snow in Natick Massachusetts
Father and daughter smile together for family photographer for NICU blog

Words of Encouragement and Advice for NICU parents

I am the kind of person who finds comfort in knowledge.  Knowing the facts or statistics makes me feel empowered when I am in a situation that is totally out of my control.  In the NICU, that’s not always a healthy coping strategy.  The internet is full of scary stories and it’s easy to be led down a bread crumb trail of symptoms and diagnosis. In the end, the most significant and most comforting fact did not come from the internet, but from a teaching methodologies class I had taken years before my son was born. My professor had told us that human learning was best described not as a straight line, but as a spiral.  You learn something, you forget half of it, you go back and relearn it while also gaining some new knowledge, and so on to create a spiral of learning that forges ahead while also looping back to retrieve what’s been forgotten along the way. When my son was born, the NICU nurses had told us countless times to be prepared for the ups and downs of neonatal intensive care. At some point, after days of seeing my son’s CPAP pressures go down and then back up, down a little more and then right back up, I realized what I was seeing: the spiral! The ups and downs on his CPAP levels were as natural as the ups and downs of learning the past tense in a new language. More importantly, a spiral meant that my child was in fact learning. I was able to see those “bad” days as just the back end of a spiral; all I had to do was watch and wait for the spiral to come back around. And since spirals are structurally much stronger than straight lines, the “bad” days were actually signs that my child was getting stronger and stronger every day.

As my child has grown, the spiral has continued to be such a comfort to me as a parent.  I have seen it in sleep training, in introducing solids, in learning to talk, in potty training, in overcoming fears and separation anxiety, and in pretty much any aspect of learning or development.  It can be so frustrating as parents when our child suddenly refuses or is unable to do something that they were easily able to do the day before.  We want them to grow and meet milestones, and we worry that any setback could be a sign of serious trouble down the road. When I start to feel this way, I think of one of my favorite quotes by Henry David Thoreau: “The more slowly trees grow at first, the sounder they are at the core. And I think the same is true of human beings.”

Preemies are proof that Thoreau was right. The tiniest humans have proven to be some of the strongest I have ever met.

Mom standing in the snow smiles at her children during family photo session in Natick Massachusetts for NICU blog
father smiles with kids during winter photo session in Natick Massachusetts

Alaina is is running a fundraiser to provide books NICU families.  Usborne Books & More will give a 50% match for all donations.

See more NICU experience stories here

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