World Prematurity Day

Das Big Boy. November 17, 2010.

Das Big Boy. November 17, 2010.

Today is World Prematurity Day. Obviously, I’m acutely aware of prematurity, and chances are, if you follow this blog at all, you’re aware of prematurity, too.

I have to be honest. I always have a bit of a squeamish reaction to prematurity awareness. That’s because one of the main goals of the day is to reduce prematurity. Now obviously, I’m all for reducing, nay, eliminating, prematurity! But to suggest that it can be done feels like suggesting that Das Big Boy’s premature birth was somehow preventable if I had done something differently. Prematurity prevention often talks about getting mothers prenatal care, and of stopping pregnant women from smoking and/or using cocaine. I’m here to tell you that I had topflight prenatal care, and that I didn’t have so much as an Advil before I was admitted to the hospital with PPROM. I took my bedrest extremely seriously, both at home and in the hospital. I only ate pasteurized cheese. I didn’t touch soft serve or smoothies. Or penne a la vodka. I didn’t clean a litterbox between 2010 and 2014. I was ridiculously, overly careful. And I still had a preemie and a baby who I managed to get to 36 weeks and 3 days which felt like an elephantine effort for not only me, Herr Husband, and Das Big Boy, but also my parents and Nanny Sunshine, not to mention a cadre of talented medical personnel. So preventing prematurity isn’t always possible, no matter how hard we try. And sometimes suggesting that it is fires up that tiny voice that wonders if I could have done something differently.

Das Big Boy. November 17, 2014.  And no, I didn't position him to resemble the photo from four years ago. I guess he still falls asleep the same way.

Das Big Boy. November 17, 2014.
And no, I didn’t position him to resemble the photo from four years ago. I guess he still falls asleep the same way.

That isn’t to say you shouldn’t love the March of Dimes and give them money in Das Big Boy’s honor. Please feel free! They’re the ones who helped get the surfactant developed which enabled him to breathe. They conducted the research into the betamethasone that grew him the paltry lungs he had at birth so he could survive. And they fund research into PPROM’s causes, and many other issues associated with prematurity that could have helped me, Das Big Boy, and our many preemie pals.

But rather than talking about preventing prematurity, I want to think about how we can respond to it. The doctors and the organizations like MoD have the medical research and stuff covered. So we can think about the personal responses. And this is really my advice for how to support anyone going though a stressful situation: preemie, sick kid, sick parent, illness, what-have-you:

Be present. Give presents.

Call to check in even if you think the person wants some space. Send texts. Emails. Leave voicemails. Don’t expect to hear back, but be there. If you talk to the person, listen. Offer empathy. Hope, but not false hope. Support. Tell the person how awesome they’re doing (but don’t say you don’t know how they do it. They don’t have a choice. They just do), and ask what you can do. We loved when people visited the NICU (as long as they were healthy!). Our people treated Das Big Boy like a person who mattered to them, which helped him feel like part of our lives even when he was stuck in the hospital. Finally, don’t hide from even the scariest or saddest situations. I know my friends who’ve lost children love the opportunity to talk about those children, to be reminded that they existed for everyone, not just for their families.

In the outfit our friends sent while I was on hospital bedrest. Look at how big that preemie outfit is on him!

In the outfit our friends sent while I was on hospital bedrest. Look at how big that preemie outfit is on him!

And send something, if you can. I’ve written about this before, but people sent us stuff for Das Big Boy even before we knew if he would survive until birth. That meant more than I can express to this day. That people believed in him enough to send him a little outfit (Thank you still, A and M!) still brings tears to my eyes. When something is so uncertain, tiny tangible things mean so much. It’s why we took multiple photos of him every day that he was in the NICU. It was, I think, our way of proving that he was there, that he existed.

Friends also sent stuff to support us and keep our spirits up. Cupcakes delivered to the NICU. Gift cards for grocery delivery. A couples massage. Having our team care for us enabled us to care for our little dude. And it reminded us that we were part of a larger world that loved us.

Prematurity isn’t all tragedy. We loved Das Big Boy more than we thought possible. We celebrated his milestones (His first ccs of breastmilk! The first time we held him! His attempts at nursing! When we had to change his incubator because he had such an explosive poop!). We held him, cuddled him, read to him, and sang to him for up to fourteen hours a day. We befriended our nurses, doctors, and staffers, and of course the other families (and we celebrated their babies’ milestones, too!). The NICU became our community. Our home.

And during our 114 days in the NICU, Herr Husband and I also had a lot of laughs. We wrote songs like “Could be Gas, Could be Sepsis” (ok, it was a whole musical called NICU, the Musical), perfected our imitations of some of the NICUs characters and acted out scenes with them, and played a weird version of “chuck, fuck, marry,” in which we had to select a staff member to hurl from the window, one to bring to Boston, and one to leave at CHONY. We imagined setting up nurses with our friends and decided whom we would want to go for a drink with or invite to a party. Even when you’re miserable, misery doesn’t define you. You be you.

The last thing I think we can all do for World Prematurity Day is something to thank the best humans on the planet, NICU nurses. If you’re a NICU parent, you can do something to thank those nurses. Send them a treat. Donate something to the NICU that they can share with their patients. Write them a letter with a picture of your kid. And if you’re not a NICU alum, and you want to do something, you can still donate something to your local NICU. Or to the next best people: teachers or therapists or doctors who work with NICU alums. Looking for a new charity? You can give money to the Center for Healthy Infant Lung Development (CHILD) Clinic, or the Home Oxygen Parent Exchange (HOPE) program, both at Children’s Hospital Boston. These are the places in which Dr. Larry Rhein works his magic, helping preemies learn to breathe, and even more sweetly, to play. The HOPE Program is Larry’s passion project, where babies who are on germ isolation can take a music class safely without worrying about the common colds that could send them to the hospital. And where their parents can make pals with other folks who’ve had this strange introduction to parenting: (blue babies, plugged in babies, boob-to-pump-to-pump-to-belly, etc.)

So Happy World Prematurity Day, or something like that. Thanks, as always, for following our journey. Prematurity doesn’t define it anymore, but I do appreciate the opportunity to remember and reflect. Thank you for giving me the opportunity to do so.

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