The Preemie Lifestyle


There is a myth that when you bring your baby home you put the NICU journey behind you.It’s what we all want to believe when we’re struggling through the emotions of having a hospitalized baby. We keep focused on that beautiful day when we’ll peel out of the hospital parking lot for the very last time with the baby in tow. And it’s a good thing that we have a goal as we trudge in and out of days in the NICU.

But, the crashing of fantasy and reality can be brutal.

After a couple of months of struggling through sleepless nights, a punishing pumping/breastfeeding schedule, and what I call the Two-Month Screaming, I began to fall into a depression. We were under our winter quarantine, I felt isolated, and the days were long and taxing.

I’ll admit that I wondered to myself, “What have I done?”

Parenting is rarely what you imagine, envision, or daydream. It is both better and worse. But, when you start out with a baby in the NICU, you drain so much of your emotional reserves in those early days. I found that I had little left for the journey after the NICU.

I came to a realization when J was six months old and he was evaluated for therapy. A social worker had mentioned all the services available for preemies as we were leaving the NICU, but I had no idea the kind of delays J would have. He wasn’t even rolling over at six months old. In fact, he didn’t roll over until he was closer to 9 months old and had spent three months in physical therapy.

It began to dawn on me that leaving the NICU wasn’t the destination or the endpoint. Having a preemie was a lifestyle. It involved Synagis shots and physical therapy and teachers who specialized in developmental delays. I wiped down surfaces with the zeal of a woman who feared one illness might kill her baby. Our entire family was vaccinated. My career disappeared into the background indefinitely. Getting J healthy was my singular focus. I felt that I owed it to him to give him as good of a start as I could, especially because I had evicted him from my body at 26 weeks.

Once I had M early too, this way of life really did become normal. I talk regularly with other preemie parents. I blog about preemie issues. I strategize on ways to help M catch up with her peers. Not a day goes by that I don’t think about where we’ve been. Raising preemies is a lifestyle, at least while they’re small children and maybe forever. The jury is out on where this journey goes, but for now it is all-consuming.

For a long time, I lived from one developmental goal to the next. I always focused on where we were going. But, sometimes we just need to slow down and appreciate where we are.

These children are hilarious and bright and energetic and enthusiastic. And so resilient. They could be poster children for all that is possible.

Would I see them this way if I hadn’t witnessed their beginning? Holding your baby in the palm of your hand changes you. Watching your two-pound baby breathe all on her own challenges everything you’ve ever believed. I’ve written before about the magic of having preemies, and it is so true. For all the difficulties, some of our moments in the NICU could take your breath away with their beauty.

Victories are sweeter, because they are so hard-fought. Walking isn’t just putting a few wobbly steps together; it’s the pinnacle of an uphill climb that began at birth, it’s the achievement built upon months and months of therapy. So what if everything takes longer, if it all seems so challenging, if sometimes I am so exhausted at trying to be a great mother? They are worth it all.

I didn’t choose the Preemie Lifestyle; it chose me. And I wouldn’t trade it.

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