Prematurity: An Unscripted Beginning

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For this month’s issue of Plano Profile, I wrote about the 77 days my daughter spent in the hospital as a preemie. Of course, I could probably write a book on the subject (Chapter 2: That Time I Got Hit By a Car, Like, As a Pedestrian) (Chapter 8: That Time Our Hospital Issued a Code Gray and Our Nursery Had to Take Weather Precautions) (Chapter 11: That Time We Thought We Were Going Home But Didn’t), but until that book happens, you can read this article instead:

http://virtualonlineeditions.com/publication/?i=285686&p=30

Preemies as Props

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Parents of preemies definitely feel guilty about what may have happened to cause the birth to be so early. But what they tend to do when they visit the NICU day after day is rally around that little peanut in the incubator. There isn’t much time to feel guilty when they’re there, because the nurses encourage parents to feed, change, and hold their children as much as possible, except in the case of the most sickly kids.

I loved, loved this essay (“Preemies are not Props“) posted to Slate, written by Joel Keller. In it, Keller blasts the anti-smoking ad in which a mother attributes smoking as the cause for her infant’s preterm birth.

He’s a bit hard on the mother (she was young when she filmed the ad, after all), but I think he’s spot on about a couple of things, namely, a) that the anti-smoking ad campaign desensitizes viewers about the long-term effects of smoking by using shock-tactics b) that the ad itself risks desensitizing viewers to the particular challenges of preemies, and c) that while smoking is a risky behavior during pregnancy, there are a variety of reason why a baby is born prematurely–and many times, there’s no reason at all. In fact, “I did everything right,” tends to be a common refrain whenever parents tell their stories about their child’s journey.

On that note, I sometimes wonder about the discussion regarding prenatal care and prematurity. While I think access to proper, affordable prenatal care is essential in bringing down the preterm birth rate, I don’t think it’s going to magic away prematurity entirely. My concern is that mothers can be unfairly villianized when prematurity is discussed in such stark terms as cause-and-effect. Believe me, whether or not they have a reason, many mothers feel guilty enough as is, especially in the first few days after the birth, without an anti-smoking campaign or anyone else further adding to the pile.

Don’t Trust “Big Medicine”? That’s Quackers!

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The internet was an invaluable resource to our family when we found ourselves smack dab in the middle of a medical crisis. The best information helped clarify the finer points of diagnostic codes and treatment plans, which in turned helped us ask our doctors better questions.

Of course, there was some bad information out there too–and a lot of bad information, once my daughter was discharged from the hospital. When I say “bad,” I don’t necessarily mean “deliberately malfeasant” (because I’m assuming many blogs are published in good faith), but rather “bad” as in “ideologically myopic and totally self-serving.”

I was reminded of how rotten bad information can be while I was researching RSV for my previous post. So, now that my daughter is back in school, I wanted to briefly write about ideology. Or more specifically, three common phrases which are frequently used by people who distort information to fit into a narrow worldview: Continue reading

RSV: The PSA

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There were signs about RSV posted at the main doors into our NICU unit–“It’s RSV Season!!!”–with special RSV visiting hours listed. A month later, new summer hours were posted, and siblings were allowed to visit the unit for a few hours each day–“RSV Season is Over!!!”

Fliers about RSV were posted on every bulletin board, near every sanitizing foam pump on the wall. We received an RSV brochure in our go-home packet from our unit’s social worker. Then, after discharge, as the summer drew to a close, our pede had a long conversation with us about RSV. ECI gave us information about it, as did our developmental pediatrician’s office.

All of which begged the questions: what the heck is RSV, and is it the fourth horseman of the apocalypse?

What is RSV?

It is not the fourth horseman of the apocalypse. It is, however, thought to be the leading cause of hospitalization in children under the age of 1. And for those who began their journey in a NICU, the thought of being re-admitted into a PICU can be a preemie parent’s worst nightmare.

Continue reading

Adjusted Age: Strangers at the Mall

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For about a year after my daughter came home, whenever a stranger asked me how old she was, I tended to quote her adjusted age. Since DC was still rather small, using her adjusted age made visual sense to most people. Using her actual age, on the other hand, tended to invite more questions, which pretty much led me to mom-splain our back-story all over these polite, but not really interested, old ladies and passerbys.

There were a few times when the old lady or passerby would say, “yes, but what’s her real age?” One was a former NICU nurse, the others were grandparents of preemies.

At four months, my daughter may have been smaller than a typical newborn, but her eyes were wide open and she had this worldly-wise look about her. At one year, she had closed the developmental gap for cognitive and motor skills, but her height and weight were still tacking more closely to her adjusted age (she was still fitting comfortably into 6 month clothing). In other words, she was an impossibly small, physical dynamo…and I worried that she’d one day be conscripted into her middle school’s cheer-leading squad as a flier. Continue reading

If I Could Keep You Little

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Marianne Richmond’s If I Could Keep You Little is a sad-sweet little read and a wonderful gift for new and expectant parents. The rhyme scheme can be a bit clunky in a few places, but that hardly diminishes the book’s overall charm–like so many Pixar movies, If I Could Keep You Little is a gentle meditation on the passage of time as well as a mindful celebration of everyday moments.

And, I’ve got to say, it was a totally different book when I first picked it up about a year ago. Continue reading

Bigger Than a Minute

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A couple of minutes after I walked into the NICU and discovered my daughter wearing clothes (clothes!) for the first time, I sent out an email update to our friends and family list and attached a few pics of her in her super-cute pajamas (which, though p-sized, were still way too big).

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A few hours after that, my grandmother called me, trying to hide the alarm in her voice. (My grandparents had dial-up internet; it had taken her all that time to download the pictures). Continue reading

Maternity Leave. Prematurely.

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You have definitely got everyone’s bullshit ‘what-I-did-over-the-weekend’ story beat. Oh, Really Carol? Skydiving, that’s interesting. I dropped a baby from my innards, and I was forced to leave it right there in the hospital for financial reasons, but go ahead, tell me what you had for brunch the next day. You had waffles? You’re incredible Carol, that’s a great fucking story.

In this clip on the week before last’s Last Week Tonight with John Oliver, profiled mom Selena Allen describes how she had to return to work just days after the birth of her premature infant in order to delay using her maternity leave until he came home from the hospital.

*Sigh*

I’ve been wanting to write about how ugly maternity leave can be when it comes to prematurity–because it’s a total disaster. And it’s hard to explain exactly why it’s so terrible without getting too technical, too boring, or too personal. But at the risk of never writing about it at all… Continue reading

Working and Pumping

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Here in Texas, the legislature is considering a bill which, if passed, would allow public school teachers to take small breaks throughout the day to pump breast milk. Unfortunately, it’s being met by a lot of opposition (and most surprisingly, by women legislators, one who believes that if she could make it work, others can too).

Here’s the thing, though: while making small accommodations for breast-feeding mothers is a very basic ask, for working mothers of preterm infants, these small accommodations are supremely vital to the health and well-being of their child.

Maternity Leave

I can write pages and pages about how maternity leave, FMLA, and short-term disability are pretty effing lousy as benefits and public policy whenever they intersect with prematurity. But for now, let me just say this: pumping at work is not so much a hypothetical for preterm mothers as it is an actuality. Continue reading

Not Judgmental (Totally Judgmental)

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I don’t remember when or why, but at some point after my daughter was born, I had decided to adopt a non-judgmental opinion of other mothers (though in reality, it wasn’t so much non-judgmental, as it was “whatever”).

I think it began in the NICU. Continue reading