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World Prematurity Day . . . and turning thirteen

On the 18th of November, I officially become the mother of a teenager.

Which seems weird because I’m only 25.

And it’s doubly weird because in some bizarre harmonic convergence, the 17th of November is officially “World Prematurity Day,” a day devoted to heightening awareness about premature birth and to help support the various institutions that work with the families and babies dealing with the difficulties that arise when a baby comes too soon.

In another odd harmonic convergence, the uncertainty and anxiety surrounding Liam’s birth mapped onto the American “hanging chad” debacle that will live in infamy. I missed most of the details of that process because I was busy being put on bedrest, then hospitalized, and then delivered of a child who came almost two months early and weighed less than two pounds.  Being delivered of a baby slightly smaller than a loaf of bread will make a gal forget about politics for a while.

Those were scary days, those early days in November, when my blissfully uncomplicated pregnancy, which had been filled with compliments about how thin I was despite being pregnant (note to lady movie stars who never really look pregnant and then regain their bodies two minutes after giving birth: you’re killing us out here in real-people land) suddenly became something that didn’t look like my life at all. Turns out that when you’re six months pregnant, you’re not supposed to be thin.

Here’s what happens when the ob-gyn does an ultrasound and announces at the end of it, “you have a crappy placenta” and puts you on bedrest:

You will be terrified; you will think to yourself that you did everything right: you ate right and you exercised right and you didn’t have coffee and you didn’t have booze except omigod that night before you knew you were pregnant you had three martinis was it the martinis omigod it was the martinis.  You will make bargains with whatever god might be listening and when people say they’re going to pray for you, you say thank you please pray, and you hope that people are slaughtering goats and chickens on your behalf because any magic, you’ll take any magic anyone wants to send your way if only everything will be okay.

You will go to bed for ten days while the country tries to figure out who will be the next President and then, when you’re admitted to the hospital after what was supposed to be a routine check on what was supposed to be all the weight gained by this little shrimp in your belly, you will lie in the hospital bed and cry.

And you will cry and cry, but because you are mostly flat on your back, the tears will pool down the sides of your face, drip into your ears and your hair. You won’t even mind the steroids they’re shooting into you, with needles that look like they were borrowed from an elephant hospital because anything, anything to make the baby be okay.  The steroids, some well-meaning but socially awkward medical resident will tell you, are for the baby’s lungs, which are “just little smears of pink jelly right now so if he was born he would probably not be able to breathe.”  And then you will cry some more because holy crap pink smears of jelly?

My tiny ferocious child, the entire 1lb, 10oz bundle, came into the world by emergency c-section, just after dawn on 18 November. The United States still didn’t have a president but I didn’t much care because the bundle was crying—weakly, it’s true, but crying. Which meant that the smears of jelly were functioning like lungs were supposed to function.

Preemies—preemies as small as Liam was—don’t really look like babies. They don’t look particularly cute or jolly or huggable. They look fragile and terrifyingly old: wizened, their skin hanging in folds around flesh that has yet to appear.

SMP-2011--00000567

Instead of being wrapped in soft blankets, they are wrapped in wires and tubes, surrounded by monitors; they are whisked away from you and tucked into an isolette (the plastic shoebox, we called it) that’s basically a small warming tank that keeps the bundle the exact temperature it would be if it were still the proverbial bun in the proverbial oven.

SMP-2011--00000558there’s a baby in there somewhere

I don’t know how we functioned, really, in the days and weeks and months of Liam being in the hospital: we lived downtown on West 4th street, and “Babies Hospital,” as it was called, is on 168th street. Sometimes it took us more than an hour each way on the subway — not that much fun, especially with sore lady bits. But we trekked back and forth every day for our sessions of “kangaroo care:” holding our bundle against our skin so he could feel our hearts beating. I hoped always that the steady sounds of our hearts would drown out the noisy pinging and whirring and beeping that defined life in the NICU.

Liam_Mom_Kanga_week2

The bundle became Liam, became a “feeder and grower” rather than anything more dire, although the NICU was filled with other babies who weren’t so lucky.  I never knew what to say on those days when I would come in and one or another isolette would be empty.  Having a preemie, I realized, is a bit like having a miscarriage: initially you think you’re the only one ever to suffer such a loss and then you realize, sadly, how many people share a version of your feelings.

And now the bundle will be thirteen. I’ve wondered if his formidable character – confident, tenacious, focused – was shaped by spending his earliest months in such inhospitable circumstances.  Or maybe character is a fluke, just like what happened to him was a fluke. No doctor could ever explain why Liam was IUGR (intra-uterine growth restriction, which I think is medical-speak for “the baby didn’t grow”) or why none of the dire predictions came true (no oxygen tanks, no developmental delays, no blindness, no physical impediments…the list went on and on).

Who really can say: maybe all the prayers and burning sage and chanting and whatever else people were doing on Liam’s behalf while he was in the hospital worked; I have no way of knowing.

What I do know? I know that my son is creative and athletic; he loves math and he loves writing; he is funny and beautiful and aggravating, all in equal measure. Liam’s preemie story ends happily; we were lucky in our doctors, our hospital, and in the baby who came into the world so tiny and so strong.

Happy birthday, teenager. The last thirteen years have been amazing; I can’t wait to see what happens next.

liam_minionThis summer Liam decided he’d learn to make stuffed toys: so he made minions. No pattern, just made ’em.

IMG_0552standing on the dividing mark between the Mara, in Kenya, and the Serengeti, in Tanzania

liam_birth_feet-thumb-450x326his feet at birth: actual size

 

Continue Reading · on November 17, 2013 in aging, birth, family, HGH, Kids, NaBloPoMo, Parenting, preemies

Big Pharma

Another post from the archives (I’ve got biiig archives…wanna come over and see them sometime?).  This post is from 2010, when we first started Liam on HGH. He’s been doing these shots now for three years, more or less, and still hates them.  But he’s growing. The doctor told us, back in April of 2010 “that if we lived in Peru” Liam’s height wouldn’t matter that much because men are much shorter there. Having no immediate plans to move to South America, however, we opted to live in the world of Big Pharma instead.

 

We’ve entered the world of Big Pharma.  At the beginning of this past summer, Liam announced that he was ready for “those shots that make you grow” –and in a sign of how long it takes to get approved for this medicine, we only started the shots last week.

First step? A lovely four-hour blood test, administered while Liam sat in a hospital room, starving hungry because he couldn’t eat until the test was over. That was in June and he’s still angry about it.

Second step? Forms, forms, forms.  Our endocrinologist says that insurance companies make the application process for this drug ridiculously complicated—and in fact there is someone from Pfizer (which makes Genotropin) who comes into endocrinologist’s office once a week “just to help” with the Human Growth Hormone application forms. It seems a little incestuous, don’t you think? Having a rep from Big Pharma in the office, making it easier for you to prescribe HGH to your patients?

Although, of course, as beneficiaries of the nice lady in the doctor’s office, we went through all the various hoops pretty easily. We talked to people at Pfizer, where there is an entire department devoted to Genotropin, including doctors, nurse liaisons, patient care consultants…I talked to about five different departments–probably I could’ve found someone to consult on a new color scheme for the kitchen if I’d asked around.

We talked to the pharmacy reps who order the drug and to the reps who talk to the insurance company–but we couldn’t talk to the insurance company. Liam’s entire case has been handled, more or less, by people sitting in cubicles in anonymous office buildings somewhere in New Jersey–and none of them have ever laid eyes on Liam. After the blood test last summer and a few phone conversations in August, we never heard from our actual endocrinologist.  She’s regularly on those “best doctors in New York” lists—but trying to get her to return a phone call? You’d have better luck mapping a genome with your iPhone GPS (hmm… new app?)

All these nice people sent us literature and videos and dvds about the drug; and “fun” calendars; and even stickers for the “Leap Frog Club:” with every refill of the drug, you get a sticker, and after six stickers, you get a prize. Woo woo. I guess that’s supposed to be consolation for getting stuck with a needle six days a week?

And we got a huge and scary red “Sharps Disposal” container; needles and swabs and a “pen” to inject this wonder drug…And we got the drug itself: a cartridge that we insert into the pen, the way you do an ink cartridge into a fountain pen.  One cartridge is about eight doses of the medicine. Would you like to know how much a cartridge costs, approximately?

700 bucks.

Right. 700 smackeroos. Multiply that by…well, the endocrinologist says that the medicine is supposed to be administered through puberty.  Let’s see. That’s six shots a week times 52 weeks times 5 years.

Comes to about $182,000.  Give or take ten grand. Explains why insurance companies would rather Liam just rolled up his shirt cuffs and got his pants hemmed instead of taking these shots.

Do you suppose if you work for Pfizer and your kid needs HGH you get a discount? Five cartridges for the price of four, something like that?

It feels a little strange, I have to say, to be willingly participating in a system that is so broken (of course, I voted, too, so I guess I’m a sucker for broken systems).

But I’m not going to quibble about the price because Liam needs this stuff:  he’s tiny and not growing very much and he’s filled with angst about his size.  I just got him a new pair of corduroys–size 7 slim–and had to cuff them twice, plus cinch them in at the waist. Probably I could’ve gotten him a size 6, but that’s the size I get for Caleb, and I couldn’t bring myself to buy my 10 year old and my 6 year old the same size pants.

I can still afford to buy my kids pants, though, even after we’ve started this medicine, because we’re among the lucky ones: we have “good insurance,” so the cost to us is minimal. God forbid what would happen if we didn’t have insurance and decided that Liam needed this medicine.

I was thinking the other day about how expensive Liam is. I mean, all kids are black suck-holes of financial need, but Liam?

He’s like our own little Mastercard ad:
Two months in the NICU? Umpteen thousand dollars
Three years (3 months to 3 years) PT and OT through Early Intervention? Umpteen thousand dollars
Five years of HGH? Umpteen gazillion dollars
Liam himself? Priceless

Continue Reading · on August 22, 2013 in Children, growing up, HGH, Kids, Parenting, preemies

Slow growing

“Growth disorder.” It was one item on a checklist of ailments that I was filling out at the dermatologist’s office, where I’d taken Liam so the doctor could inspect a mole on Liam’s back.

“Growth disorder,” on a list with asthma, leukemia, shingles, bleeding tendency (what on earth is that, I wonder? Don’t we all have a tendency to bleed?)…a list of problems long enough to fill the entire sheet of paper.

It’s the “disorder” that gets me, although I suppose, technically, that’s the correct term for why Liam is so short.  Conventional medical wisdom dictates that preemies “catch up” in growth by their second or third year, but true to form, Liam flew in the face of convention. He stayed small, stayed off the growth chart, that ubiquitous measurement of “normal.”  He stayed small to the tune of being always the smallest kid in his grade, so small that people ask him if he and Caleb (who is almost four years younger) are twins.

We’d debated for almost a year about whether or not to give Liam growth hormone. How do you say to your kid that you love him just the way he is, in all his ferocious tiny glory and then say, “but here’s a shot so that you can get bigger and look different?”  My friend Patsy made the analogy to giving a kid braces: no one is going to die from bad teeth, but why not give your kid the advantage of a nice smile? Our endocrinologist said that Liam’s size wouldn’t be an issue…if we lived in Costa Rica. I wasn’t sure exactly what I was supposed to do with that information—plan to send Liam to college in Costa Rica so he can get a date?

In this country, unless you’re the short Clinton cabinet guy, being a man who barely scrapes five feet can be tough. And Liam has shown no interest in horses (or labor policy) so I’m thinking that jockey is no more an option than being Secretary of Labor. Continue Reading →

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Continue Reading · on May 23, 2011 in Children, growing up, HGH, preemies

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