Archive | preemies

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

pre-teen: a boy in blurry focus

It happened like someone had flipped on a switch.

At one point there was a boy who wanted to tell me everything and who thought that facebook was stupid and his parents were pretty cool.

And then, this summer, Liam became a pre-teen. He’s always been precocious (he was even born ahead of schedule), so I guess it’s no surprise that now, at the age of twelve-and-a-half, he’s verging on sixteen.

I thought, a long time ago, when I watched other moms shop for darling little frocks and furbelows for their girl-babies while I pawed through yet another stack of navy-blue trousers for my boy-babes, that at least when the teen and pre-teen years hit, I’d be safe: boys, I thought, don’t really “go through” adolescence. They just get older. Sure, there might be skin problems, perhaps the occasional illegal substance, but all that moodiness and navel-gazing and emoting?  Not in this boy-dominated household.

Yeah, I thought. Those mothers of daughters are gonna suffer, while I, with my boringly dressed boys, will sail through their teen-age years.

Yeah. You’re going to be wanting to use the word hubris here.

Upstairs in his room (door firmly closed) is a boy whose headphones sometime in late June became surgically attached to his ears, whose favorite phrase is “you don’t understand” (with a close second being “fine in a tone that implies anything but), and whose emotions veer from joy to rage with all the precision of a drunk driver trying to navigate the Pacific Coast Highway.

It’s exhausting.

Somehow he’s perfected the lip curl, the eye roll, the tiny puff of exasperated breath that I thought were the exclusive purview of adolescent girls; suddenly he tells me nothing, facebook is totes cool and we, his parents, are stupid.

God knows after what I put my mother through in my teen-age years, I probably deserve some lip-curling and eye-rolling. Karma, as they say, is a bitch. I’m still apologizing to my mom for my behavior, although now we’re both so old that neither of us really remember what the hell I did.

Well, okay. Some of the things we remember. But that’s a post for another time.

Dear reader, I understand that Liam wants to feel independent; I know he’s trying on some new attitudes to see how they fit, just like he’s trying to find jeans that aren’t too baggy on his skinny hips. I know he doesn’t need a friend but a parent, and I’m pretty much comfortable with being the mom who says “no.” I’ve done my reading, I’m paying attention (yes, I troll his  facebook page for inappropriate content and never in my life have I been so bored on facebook because good lord, twelve-year olds are dull).

But lately I feel like I did when he was a baby, when there I was, confronted with this utterly alien being who had needs and wants and what the hell did I know about babies, anyway, other than that I had a devout wish to not fuck up.

I’ve still got that same wish–please don’t let me fuck up this parenting thing–but all the rules and rhythms I’ve learned over the last twelve years don’t seem quite to apply any more.  The baby not only has needs, the baby has opinions and isn’t afraid to express them. (Is it just me, or did kids used to have fewer opinions? Or maybe it’s just that their opinions mattered less.)

Husband does a little eye-rolling of his own these days, when I get going about Liam’s behavior and truth be told, Liam is mostly just wicked irritating; it’s not like he’s sporting gangsta life tatts or pilfering from the liquor cabinet. He is, after all, only twelve and still more interested in League of Legends, Arsenal, and…well, facebook, than he is in anything else. He still sits on my lap; he sometimes even gives me unsolicited hugs.

If I’m honest with myself, I suspect that much of my annoyance comes not from anger but from a kind of sadness, almost an anticipation of loss. When I’m gritting my teeth and saying “Take.Off.Your.Headphones.Now.” what I’m really saying is “don’t grow up too fast, don’t leave us behind so soon.” I think we are saying good-bye to your childhood, my sweet Liam, and it sort of breaks my heart.

 

IMG_0422yes, I know the picture is out of focus. it’s a you know, metaphor

 

Continue Reading · on September 25, 2013 in birth, expat, family, growing up, Kids, 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

Twelve? twelve? … TWELVE

If you’re a person who writes a blog and if that blog should talk about your children if you have them (or your pets if you don’t, although really it’s about the same thing, isn’t it?), then the occasion of a birthday – theirs or yours – might call to mind a blog post.

And if you’re going to write a blog post about a birthday, you might find yourself wandering in the thicket of photos on your computer, and it might be that these photos, which were going to be organized last year five years ago weekend but then there was that thing that happened so you couldn’t get to it and then – well, anyway, the thicket of photos might prove to be an endless forest in which you would wander for hours, lost in thinking about that tiny baby, who is now…

twelve?

Twelve?

And you would emerge blinking from your dreamy visit in the digitally preserved past, like so much pixelated amber, and say to yourself, that teeny burrito-sized baby, twelve? 

Because twelve — well, to be twelve, you might as well already be thirteen. Twelve is but the pause, the deep inhaled breath before the exhaled hormonal hurricanes begin.  But what’s that, you say, boys are easier? Less tumultuous, fewer emotional high-wire acts?

Hmm. I’m skeptical. Liam has never in his life, as near as I can tell, followed the conventional path anywhere:

He sets his alarm for 5:49 every morning, gets out of bed, showers, gets dressed in his school uniform, and is already playing his computer game before I’ve stumbled out of my room ten minutes later. He’s been reading Isaac Asimov’s book Atom for fun; he came to a book talk we had on campus a few weeks ago about Yann Martel’s Life of Pi — of his own volition.

At twelve, this boy is torn between being a physicist, a professional soccer football player, a chef who specializes in chocolate desserts, and an inventor – and who is happiest building intricate, self-designed Lego creations. At twelve, he can’t find the “off” switch on his competitive engines, even to play a “friendly” game of Monopoly. He’ll gut you over Boardwalk without batting an eyelash, will wheedle for you to do a trade with him until you give in…and then slam you with rents so high you’re bankrupted.

At twelve, this boy–who lives for football, and finds fart jokes vastly amusing, wanted two things for his birthday: a fuzzy bathrobe and bath products.  It’s as if he’s channeling Hugh Hefner, but he has no idea who Hugh Hefner is.

At twelve, he wants to be a good big brother…if only his younger brother would leave him alone. Except when Younger Brother does leave him alone, Older Brother suddenly feels lonely, suddenly aware that having an in-house companion is a pretty spectacular plus.  And mostly eight and now-twelve have found an equilibrium, realized that in our expat lives, where transience is a fact of life, they’ve mostly got each other – so killing one another is probably not in either of their best interest. A few years ago, Caleb’s joke present to Liam – a rock, ala Charlie Brown’s Halloween – would’ve given Liam apoplexy. Now, in his mature twelve-ness? He laughed.

Twelve. Old enough to be left alone for a bit if I have to run to the store; old enough to be interested in things like nice-smelling shampoo and having his hair look just so in the morning. But young enough to still sit on my lap, to ask for a hug, to want me to tuck him in at night and “say good-nights.”  And as I whisper our good-night ritual, I trace the outline of his face with my finger. In the dark, it’s twelve years ago, eleven years ago…it’s all the years, and I’m rocking a baby to sleep.

 

 

psst, guess what? (yes, I’m whispering; the baby is asleep) there’s a challenge grid going on in the yeahwrite world for those of us stupid brave enough to tackle NaBloPoMo. Yes. A post a day. Might not keep the doctor away but it may bring on tendonitis. And a lot of good writing. So click on the badge and look around the grid: you might find some new favorite writers to keep you company through Thanksgiving, US football, rainstorms, and whatever else is coming down on you these days.

Continue Reading · on November 18, 2012 in growing up, Kids, legos, Parenting, preemies

Tim Riggins, Buzz Bissinger, and Father’s Day

Buzz Bissinger wrote the book Friday Night Lights, which got made into a movie and then a television show that introduced us to Taylor Kitsch, in the role of Tim Riggins.  For that reason alone, we all owe Buzz a debt of gratitude and should buy his latest book, a memoir about a road trip he took with his brain-damaged son Zachary. Father’s Day is Bissinger’s first swing at a memoir and–to shift from football to baseball–he hits the ball out of the park.

In an effort to connect with his twenty-four year old son, Bissinger decides the two of them should drive (because Zach hates to fly) from Philadelphia to Los Angeles, re-visiting all the places they’ve lived, places that Zach remembers with pinpoint accuracy. Zach is the “family’s human GPS” as Bissinger tells us, despite the fact that he will never himself be able to drive–or to live alone, or to fully comprehend the plot of “Friday Night Lights.  Zach and his brother were born thirteen weeks early, but Zach came three minutes after his brother and in that crucial three minutes, his brain was deprived of necessary oxygen. Zach’s twin, Greg, is now a graduate student planning a career as a teacher; Zach has a steady job bagging groceries.

Bissinger’s twins were more premature than my son Liam (born at 32 1/2 weeks), but Liam weighed less than they did. Zach was one pound, eleven ounces, his brother slightly more; Liam was one pound, ten ounces. The dire predictions that came true for Zach were possibilities for Liam’s future, but, amazingly, Liam’s only preemie legacy is that he’s still the shortest seventh grader on two continents. The feelings that Bissinger describes when his sons were born called up all my painful memories of the NICU: my baby wasn’t supposed to be surrounded by a clutch of masked doctors and nurses; my baby wasn’t supposed to be plugged into an infinite number of clicking, whirring machines; my baby wasn’t supposed to be wrapped up tight in a plastic box with a tube down his throat; my baby wasn’t supposed to spend the first months of his life in a hospital ward.

Eventually, Zach comes home from the hospital and his parents confront the fact that brain damage had “settled like patchy mist, some places forever abandoned, and yet some places heightened and magnified.”  Zach is a savant, who is filled with love and optimism, but he is not, as Bissinger admits with painful clarity, “the son he wanted.”  Father’s Day begins as the story of Bissinger’s efforts to know his son more closely, but it is also the story of Bissinger struggling to come to terms with the reality, not only of his son’s life, but his own.

Memoirs are often praised for their “brutal honesty,” but of all the memoirs I’ve read, only Father’s Day demonstrates the full power of that phrase. Bissinger lays himself bare, gives us a full monty of his flaws: professional jealousy, marital failure, profound insecurity, fraught relationships with his own parents. Mostly, however, Bissinger scrutinizes his relationship with Zach–or rather, what he regards as the lack of a relationship with Zach. In talking about Zach, Bissinger runs the risk of alienating his readers because he gives voice to those dark thoughts that I think all parents have, but rarely admit–even to themselves. We wonder with dismay why we got the kid we did; why little Dakota can do back flips while our kid balks at somersaults; why diligent Jayden gets straight As and works hard while our kid stares at the fish-tank and refuses to bathe. Perhaps we protest a little too much that State U offers a great education, even as we stare wistfully at the Harvard bumper-sticker on our neighbor’s car, or maybe it’s just the minor-league networking we do to land our kid the “good” summer job as opposed to the job scooping ice cream.  Bissinger says “I wanted [my kids] to succeed. I wanted them to make me proud…[and] grocery bagging was beyond humbling for a father awash in ambition.”

The arc of this narrative moves Bissinger from anger and frustration at his son’s situation to a place of peace (or as peaceful as someone like Bissinger can get), and so in that regard, the endpoint of the book does not come as a huge surprise. The surprises occur along the journey, as the two men see parts of America that don’t usually make it into the public eye (Tulsa, anyone?) and as Bissinger explores the history of Zachary’s life, which necessitates an exploration of American attitudes towards special needs kids. In order for Zach to get his disability check from Social Security, for instance, he is required to take an aptitude test every two years, “as if he might transform into a member of Mensa when he cannot drive or cook on a stove or add two-digit numbers.”  The system, Bissinger argues, is “despicable….It is our moral obligation to make [people like Zach] into productive citizens. But without the assistance they deserve, they will always live … on the bare fringes of the world.”

Zach, it is clear, is one of the lucky ones, because he has parents who can afford to integrate him into the world as fully as possible; what Bissinger comes to realize is that his perspective on Zach’s life is not Zach’s perspective on his life. Zach does not see himself on the fringes of the world; Zach loves his routines, his co-workers, his friends; he loves his family and his memories.  As the two men drive cross-country, their roles, ironically, begin to reverse. It is Bissinger who locks himself out of hotel rooms, not Zach; it is Zach who reads the map, not his father; it is Zach who stays calm when they’re lost or tired or when his father has an anxiety attack. And it is Zach, in fact, who helps Bissinger come to closure about the deaths of his parents, some years earlier.

Bissinger writes so eloquently about what he learns from his son on their journey that I finished the book with a haze of tears in my eyes.  That is not to say that the book ends in roses and sunshine; it’s not a “pretty little package with a tidy bow,” as Bissinger says. Despite Zach’s growth–he tells his father that he wants to come with the family when they go visit Zach’s step-brother in South Africa, a twenty-hour flight–Bissinger still fears for his son’s future once his parents are no longer around to intercede on his behalf.  But, Bissinger adds, he sees Zach as the most fearless man he knows, who has restored “the faith of a father in all that can be.”

So yeah, Bissinger brought us Tim Riggins, and that’s a fine, fine thing. But in Father’s Day, Bissinger brings us a brilliant narrative about the painful joy of being a parent–and he brings us Zach, who is better than an entire season’s worth of Rigginses. Whether or not you have sons, whether or not you’re the parent of a special needs child, whether or not you’re a father, you owe it to yourself to read Father’s Day.

 

book jacket photo source here

 

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Continue Reading · on August 21, 2012 in birth, Books, Children, family, growing up, Kids, preemies

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