Flotsam

Tuesday morning I went to the state capitol to speak to elected officials about the March of Dimes. Being out in the world around other adults has become thrillingly novel, and I am no longer well-equipped for it, sadly. First there was the problem of clothing myself, as my customary uniform of housepants and a long-sleeved t-shirt would have been inappropriate. Though I now wonder whether seeing me with my unwashed hair in a bun, spit up on my knee, and bits of Cheerio clinging to my left breast would have inspired useful sympathy, or better yet, financial support for a March of Dimes pilot program wherein mothers of preemies are flown to Bermuda for the second half of RSV season and plied with strong drink and grilled shrimp eaten off the smooth torsos of cabana boys.

Anyhow, I managed to unearth my one pair of fancy pants from a bag of dry cleaning that one of the cats had been using as a lair. The pants in question appeared to be made entirely of cat hair when I found them, but I recognized the label and knew that there was perfectly good black material underneath. After I had removed the worst of the furriness with duct tape, I hung the pants in the bathroom with the shower running in an attempt to steam out the 6-month-old creases. We do own an iron, by the way, but I am ashamed to say that it wasn’t until later in the afternoon that I even remembered the existence of such a fantastical, fabric-smoothing appliance. Luckily, the never worn button-down shirt I paired with the pants still had creases running down the arms, so I figured “creases” could be the unifying theme tying my outfit together. Missing from my ensemble was underwear, because I couldn’t find any.

The meetings went well, I think, though to be perfectly honest I can’t remember what I said. Well, that’s not entirely true. I DO remember that at one point I was mentioning my hairdresser’s loss of premature twins 20 years ago, only for some reason I thought “hairdresser” made me sound like Emily Gilmore, or something—some vain, bourgeois woman who goes once a week to have her hair set in rollers—and because I couldn’t remember another word for it (Stylist! Woman who cuts my hair!) I ended up referring to her as my “hair…cutter” after a long, panicky, aphasia-driven pause.

I think I write with some level of competence. I can make my point clearly, sometimes even with a soupcon of elegance. But speaking, you would never believe English is my first language. There are so many words to choose from, you see, and I can’t sort through them fast enough to articulate myself in conversation. Then I get flustered, and either babble wildly or shut down altogether. Those of you who will be at the St. Paul March of for Babies will see what I mean when I speak—my plan if I get stuck is to fall off the stage as a distraction. It should be a good time either way.

Anyhow, I got to live out my West Wing fantasies for a morning, which was more than worth any awkwardness, and because I am a huge civics nerd who spent all her time at her last job reading the laws she was supposed to be editing, I developed a little crush on the woman leading our group, who wears suits and talks easily about bill language and gets to play Josh Lyman while advocating for babies. I mean really—does it get any better?
Our legislative visits were in the state office building, across from where we met in the capitol-proper, and because this is Minnesota, there are underground tunnels connecting the two. These tunnels were like something out of a Law & Order cold open. I kept expecting to round a corner and come upon a skeleton still wearing a tie, maybe next to HELP ME! spelled out in gnawed-upon rat bones. Everything was dank and yellowish and far more labyrinthine than necessary, and I wonder how many people have been lost down there and given up for dead.

After the capitol I raced home to take Simone to her appointment at the NICU Follow-Up Clinic. As you may recall, the last time she was there for a developmental assessment, things went…poorly. Like, “I think your baby might be deaf” poorly. Simone was five months adjusted at the time, testing in the two-month range for receptive language, with a delay in motor skills as well. So yes, I was nervous about Tuesday’s appointment, if by “nervous” you mean “moments from losing control of my bowels.” As it turned out, however, I needn’t have been: this time, Simone scored at or ahead of her adjusted age for everything, mostly in the nine-month range. And receptive language?
ELEVEN MONTHS, BITCHES.
Probably as a result of needing room for all that brain, her head is in the 90th percentile on the preemie charts. She’s coming for you, full-term babies. Watch your tiny backs.

Thank you all for your kind words last week. I can’t say that I have revised my position that January should be abolished, but I do feel much better, now. It is odd to look back on last year and realize that I went through all of that with no idea how it would turn out in the end, just blindly putting one foot in front of the other and humming as loudly as possible to drown out the thrumming of my heart.

This year, we have been chosen as the local ambassador family for The March of Dimes’ March Of For Babies, here in St. Paul. What does that mean, you ask? Well, besides the obvious trappings that come with any ambassadorship—parking privileges, diplomatic immunity, a Town Car festooned with little flags (bearing the crest of the March of Dimes, which shows a baby astride the back of a tiger)—what it means is that I will share my story with others, partly by speaking aloud (publicly and without cue cards, ach du lieber) at March of Dimes functions.

The year before I got pregnant with Ames and Simone, I helped to organize my company’s employee giving campaign. During our volunteer training, a woman spoke about going into preterm labor and giving birth far from home, far too early. She was speaking on behalf of the March of Dimes, and that year I added them to my customary monthly tithing. I didn’t know then that my own daughter would survive partially because of that very organization—more specifically because of the March-of-Dimes-funded development of surfactant—but I was moved by that woman’s story, and what I most hope for my tenure as ambassador is that I can move someone else in the same way.

Tonight I am sitting here watching inauguration coverage, and thinking about a baby I have never met. A month ago, a photographer came to shoot us, and the NICU where Simone spent her first 96 days, for an essay I wrote. The photographer took pictures of a few current NICU babies as well, and this morning I heard that one of them died last week.

On the one hand, there is so much to celebrate. Last year, I returned from walking in the March Of For Babies to see my tube-tethered daughter in her hospital room. I’d bought her a March T-shirt in the smallest size available—six months—which was so big I could practically have used it as a swaddle. This April, Simone will be with me on the walk. In her stroller, oxygen free—and she has long since outgrown last year’s shirt.

But last week, another family went home without their baby. A baby they loved, and prepared for, and whose isolette they sat next to for days upon days upon days. I feel sick and small just thinking about it, and about the fact that really, it isn’t terribly unusual. Which is terrible.

I hope that one day it will happen less, but blood circulators don’t pay for themselves, you know.
Last year, you all helped me raise $3600 for the March of Dimes. The donations came from 25 states, England, Ireland, and Brazil. Money is not a subject I am particularly comfortable with, and I know these are difficult, belt-cinchy times, but…well, there it is, over on the farthest sidebar, right at the top. Open for business. That scrawny looking thing between my hands in the picture is Simone. She’s grown quite a bit since then, and the advances in neonatology made possible by the March of Dimes deserve at least a bit of the credit for these cheeks:

{fig. 1: Think of the Children!}

Shameless, throwing in a picture of a baby like that, I know. Thank heavens for my diplomatic immunity.

I have mixed feelings about 2008. I started several end-of-the-year type posts, but as you may have noticed, none of them made it online. It’s complicated. Part of me, understandably, was standing at the door ready to give 2008 a solid kick on its way out. But the other part—well, like I said. Complicated.

On paper, 2008 looks terrible. Ames’ death alone should have been enough to ruin the year, not to mention the fact that I spent a full third of it in the hospital: first as a patient, and then hunched next to an isolette. But 2008 was the happiest year of my life. It feels traitorous to say so, but as I keep explaining, it is not because the bad was insufficient, but because there was so much good. Plop the events of January 2008 into any other year, and said year would surely qualify as the worst I have ever had, but besides January, 2008 had March, and May, and July.

But I fully expect 2009 to be better, though I admit it got off to a rocky start. Saturday we put Simone to bed at six, as usual, and she kept waking up, screaming in what was obviously agony. Actually, that sentence was misleading: SCOTT put Simone to bed at six, while I ran off to have a sidecar and eat truffle chips, and I returned at 11 to find the both of them awake and miserable. Scott then went to bed and I tried everything to soothe our fractious baby: I nursed, I shushed, I swaddled and rocked. She would be fine for ten minutes or so, and then start writhing and panting and screaming in a way I had never, ever heard before. Simone is a very easygoing baby. I don’t say this often, because I know some of you have Difficult Babies, and if I had a Difficult Baby I would hate to hear about a baby who is cheerful and easily soothed, but Simone really is. Sure, sometimes when she’s teething she demands to be walked around and cajoled, but Saturday, nothing was working, and her screams were unlike any she has made before. Because of the writhing and panty/grunty noises she was making, I thought she might be constipated, and naturally decided some well-intentioned buggery was in order. In the NICU, they taught us the ol’ lubed-thermometer-up-the-bottom trick, so I tried it, and while the *ahem* desired result was *ahurrumph* achieved, it didn’t seem to make her any more comfortable.

To abridge what is becoming a very tedious story, we eventually ended up in the ER, where they decided she may have a telescoping bowel, then ruled that out via CT, decided her Area looked inflamed and that it was a bladder infection, which they then ruled out via catheter, and finally discovered that the culprit was in fact ear infections.

Now, lest you think the ER doctor should have thought of this earlier, let me assure you that she did: she looked in Simone’s ears first thing, and while one was slightly pink, they looked fine. She asked whether Simone had been pulling her ears, and while she has scratched one of them to ribbons, this is nothing new, on account of they itch from her eczema. But finally, out of ideas, on a whim, the doctor put numbing drops down Simone’s wee aural canals, and five minutes later our baby was grinning and blowing bubbles at the nurse.

While all this was going on, I was in a bad way, sitting uselessly on a chair in the exam room, trying not to throw up as Scott held the baby. Usually I am the one holding the baby, not to mention peppering the medical personnel with questions, but I was anxious, and having what I can only describe as flashbacks to the night I was admitted, and later, when looking at the monitor, to the NICU. Strangely, the flashbacks were to times I remember handling quite well—stoically, even. It was only Saturday night that I realized how terrifying they had been. It was a bad night all around, and I blame January.

January last year is when everything went so horribly awry: when we lost Ames, when I went into preterm labor. The January before I had a tiny miscarriage, the January before that Scott and I nearly separated, and the January before THAT—New Year’s Day, to be exact—I miscarried again. I swear to god, January has it in for me, and I have been terrified all week that sometime this month, Simone will die.

I know how completely, ridiculously irrational that is, and I am a big fan of rationality, honest! But when Simone was screaming in pain and they told us to take her to the ER and then couldn’t figure out what was wrong…well, it was hard not to think the worst, somehow.

But! by six a.m we’d all made it home alive, and Simone is much improved, so I am trying to relax and enjoy my shiny new year. And I have plenty of things to keep me busy this month, which is good, because ridiculous or not, I think I will feel much better when January is over.