Flotsam

I keep sitting down to write and then jumping straight back up again because write?
THERE IS NO TIME TO WRITE.
Simone is coming home on Tuesday, less than 72 hours from now.

After the swallow study she was still having trouble with any bottle not given in the presence of a highly-paid radiologist, so we added Simply Thick and Voila! Au revoir le tube de nasogastrique! This was our last homecoming prerequisite, so in the last two days we have had oxygen training, medication training, reflux classes, and infant CPR—not to mention a pseudo baby shower wherein my insurance company and a medical equipment supplier deluged me with nasal cannulae, a pulse oximeter, and a jaunty nebulizer shaped like a panda bear. The lowest setting the home tanks can deliver is more oxygen than Simone needs, but the pulmonologist felt there was no point in pushing her to come off entirely before discharge. We will likely ditch the O2 at her first outpatient scan in a month.

Last week was rife with small frustrations. Riding the elevator with a gaggle of pillow-clutching, birth-class-bound third trimester women and their partners made me want to cry or possibly extinguish a cigarette with someone’s face. Later I spent a full 30 minutes in my (ill-starred, now panic-inducing) perinatologist’s office waiting for Ames’s autopsy report, only to be told that it is still not back, after three months. Strange, especially as I have already received the bills from pathology. I don’t think they should be allowed to bill you for tests before producing the results, do you?
The point is, it was a hard week, but when those magic words “Simone,” “home,” and “Tuesday” were spoken, I rose into the air and flew high above the city, whistling a melodious tune and leaving a trail of gamboling kittens in my wake. I was happy, is what I am saying, and I don’t see myself coming back to earth any time soon.

Which doesn’t mean I have lost my ability to whine about the mundane: yesterday I went to Ikea, and was foolish enough to do so (a) alone and (b) in heels. Limping towards checkout pulling one cart and pushing the other with arms shaking from muscle fatigue I realized that I had left my purse…somewhere.
Luckily, Ikea comprises only 336,000 square feet.

Speaking of which, Scott and I realized yesterday that save a bookshelf from Target, Simone’s crib is the only piece of furniture we own that was not made by those particular Swedes. If all the Ikea items in the world were beamed into spaceships by a race of frugal, design-conscious aliens, we would be SO SCREWED.
And speaking of that, once home I realized that the wee shelves I bought for Simone’s room are unfinished pine. Does this mean I have to finish them, or can I just leave them all rustical like and do it later?
[Ed. Note: The correct answer, should you be tempted to give one, is “do it later.” “Or not at all” will also be accepted. Partial credit will be given for “maybe just rub a little oil soap on them.”]

My grandmother would roll in her grave to hear it, but last Tuesday I had a visit from a professional cleaning person. The downside to the renovations turned out to be that the floors of our new apartment were caked with construction grime, and it seemed the management’s post-construction cleaning consisted of nothing more than a quick whisk with a broom. A broom missing most of its bristles. And possibly previously used to smooth the walls of a wigwam.
I was not in the mood to complain, seeing as how this management company has treated us very well, but neither was I in the mood to spend hours on my hands and knees with my Mr. Clean Magic Eraser, which is not nearly Magical enough. Hence the cleaning person. And my ensuing middle-class guilt. Now, this cleaning person, though she was loaned to me by a friend, was not to my knowledge an indentured servant. I paid her handsomely. Yet while I was waiting for her outside on the stoop, I found myself wondering whether I should run upstairs and put a bottle of wine in the fridge in case she got thirsty, or maybe just pretend I was not the resident of the apartment at all, but merely a personal assistant dispatched to unlock the door at the appointed time. I could commiserate as the cleaning person paused in her labors, one hand on her back massaging the sore muscles she had acquired from years of toil.
“I hate that you have to do this,” I would say, “I think the sloppy bitch should scrub her own damn floors. More wine?”

Tonight I am putting the rest of the furniture together, washing loads and loads of baby laundry, and arranging a bouquet of bulb syringes on my bedside table. I think I might be nesting, which the pregnancy newsletter I still get from my former OB’s office told me to expect this week, so I’m right on schedule.
Somebody should tell that to Scott. “You need to be less crazy,” he said to me this morning as I nattered on about lists and schedules.
“[REDACTED]!,” I shrilled. And then I returned to alphabetizing my bobby pins.

We’re as ready as we’ll ever be, parenthood. BRING IT.

We moved Saturday, and all that up and down the stairs meant that Sunday, the morning of the march, I awoke with my calf muscles curled into tight balls like frightened hedgehogs. But I did it, I Marched Shuffled for Babies, and I had a wonderful time.
The weather was quite nice in the end, cold, but sunny, and the walk itself was around a lovely lake. As I was driving into the park I got briefly teary at the sight of the first March for Babies sign. I knew, of course, that it was not an event specifically and solely in honor of Simone, but I was grateful all the same. And sore legs or not, it felt good to be walking for a cause I believe in, and for all of you—in 25 states plus England, Ireland, and Brazil—who donated. I can’t wait to take Simone on the walk next year, and I am hoping it will be something the two of us can share together for years to come until she hits puberty and decides it is just another lame thing I am forcing her to do because I WILL NEVER UNDERSTAND HER, GOD. Incidentally, I was the largest fundraiser on my team (meaning that I raised the largest amount of money, not that I was the most rotund—though as the team was composed primarily of lithesome 22-year-old NICU nurses, I may have set the zaftig record as well) and my prize was a family photo shoot and $100 print credit with this woman. I am so excited I could spit. I will schedule the shoot as soon as Simone is off oxygen and cannula-free, so hurry up baby! Breathe for mama! Breathe for her need to obsessively document your every move! And, you know, for your health, or whatever.

Last night I went out with my baby brother and I am still recovering. I had a particularly clumsy start to the evening—I nearly killed myself stepping out of the shower, having forgotten that my new tub is a much-higher clawfoot, and then I fell off my heels walking out to the taxi. Once in the very fancy bar of the very fancy restaurant I found myself unable to get into my seat at the table without awkwardly stepping over the entire chair. All this before my first sidecar.
And then my brother FORCED me to order another. And then we went into dinner and found that we had been given a complimentary bottle of Veuve Clicquot. Max is a chef and works front of the house at the best restaurant in the Cities, so he is used to this sort of treatment, but I am not, and so felt obliged to have a glass or two because FREE CHAMPAGNE!! And then I ate a bunch of rich food (gnocchi with lobster and butter sauce, veal sous vide, talleggio with honeycomb, and some sort of cheese filled crepe with figs and basalmic), which addled my senses enough that I ordered a glass of red wine. I did not finish either the wine or my second sidecar, but the damage was done. I vaguely remember announcing my hatred of young people, forgetting how recently some members of the table had attained suffrage. One of Max’s friends, a medical examiner, was there, and I both asked her what percentage of her work hours, approximately, she spends fighting crime, and congratulated her on her upcoming move to Baltimore by mentioning what a high murder rate they have (good for business!). And then I went home, and woke up at four a.m. inexplicably naked and sweating, with a pounding head and a firm conviction that I was only moments from death. I’m a regular Paris Hilton in a nursing bra, over here.
So I don’t think I’ll be doing that again anytime soon. I like a glass of wine as much as the next girl—maybe more, depending upon who this proverbial next girl is—but drunkenness is not for me. I don’t know if I have ever told you this, but I once, about five years ago, called my mother and brother in the middle of the night convinced that I had alcohol poisoning. This is noteworthy only because at the time I had consumed exactly two (2) Manhattans over a six-hour period. OH, the LAUGHTER. They still trot that story out every few months. What they don’t know is that despite their reassurances, I slept on my side that night to prevent a potentially deadly aspiration. Ah, carefree youth, I hardly knew ye! In fact, I never had even a passing acquaintance with ye, having been born at the tender age of 45.

We have not yet unpacked, which makes moving about the new apartment a treacherous undertaking indeed. And as the presence of my bosom is required at the hospital for much of the day, I am not sure how we will ever find the time to tackle Box Mountain. Yet Simone’s homecoming looms ever-closer.

One of the Baby of the Week judges pointed out that Simone is becoming quite fat and succulent-looking, and I must agree. She weighs five and a half pounds now, or about the equivalent of 28 average-sized adult hamsters. Why, I remember when she was only a little bigger than half-a-dozen gerbils! They grow up so fast.

[SCENE: A lavishly appointed NICU ROOM. NURSE PRACTITIONER—formerly seen in Act I: A Streetcar Named TRACHEOSTOMY—pulls up a chair. ALEXA looks up from LAPTOP, visibly ALARMED.]

NURSE PRACTITIONER: So, I just want to prepare you…
ALEXA’S INNER MONOLOGUE: Oh god, WHAT NOW?
NURSE PRACTITIONER: …for the fact that things may start moving quickly now that Simone is back on the regular cannula. She can be discharged on this oxygen setting, and once she is taking all her feedings by bottle or breast, we will be sending her home.
ALEXA’S NECK: WHIPLASH!

-Fade to black-

[SCENE: A lavishly appointed NICU ROOM. ALEXA is MAKING FACES at the BABY. WOMAN enters.]
WOMAN: Hi! I’m from Discharge Planning. Do you have a few minutes to talk?
ALEXA’S BRAIN: LIQUIFIES, DRIPS OUT RIGHT EAR

It looks like Simone is coming home. Maybe not today, maybe not tomorrow, but soon, and for the rest of her life (we may have to negotiate that last part when she reaches college age, but never mind that now).
So, uh, I have a lot of questions. About babies. Because of how I have one. Who will be coming to live with me, at my apartment, where the nurse-to-neonate ratio is suboptimal (0-1). Currently, my knowledge of infants is more or less limited to the following:
1. Generally diminutive in size
2. Fond of milk
3. Exhibit poor impulse control
4. To clean, wipe with damp cloth
5. Should never be thrown out with bathwater

I was initially relieved to see that babies have their own Wikipedia page, but it turns out to be full of helpful tidbits such as “Babies cannot walk” and “Infants’ social presence is different from that of adults, and they may be the focus of attention. Fees for transportation and entrance fees at locations such as amusement parks or museums are often waived.”

While I am certainly pleased to know that I can send Simone out for an afternoon of sightseeing with a minimal amount of cash, I have more pressing concerns. Like the tag that came attached to one of my daughter’s snap-heavy unitards:

PARDON?

Catch FIRE? Are babies flammable? Is this something I need to be watching for, a PLUME OF SMOKE rising from her bassinet?
So yes: I have many questions. I could “read” or “consult experts,” but talking to the Internet has served me so well in the past that I thought I would do that instead. I have a whole slew of things to ask about breastfeeding and reflux and whatnot, but those will be more involved posts later this week (that anyone who is not deeply interested in my nipples may want to skip). For now, I will start with something simple:

MY NEUROSIS, LET ME SHOW U IT
One of the first things we heard when they started transitioning Simone to a crib was that she would need to be bundled up, and could we bring in some of her clothes? “Sure!” I said brightly, surreptitiously writing Buy Baby Clothes on my To Do list. I never had a baby shower, seeing as how I didn’t make it out of the second trimester, and my paranoia did not permit me to buy baby things during pregnancy myself (a good thing, too, or I’d be listing a double stroller on Craigslist right about now). After Simone was born, her health was so tenuous that I was even less inclined to purchase crib bedding I might have to re-tailor into an infant shroud.

But if trained medical professionals needed me to shop for wee bodysuits, well, by golly I would. So I ran out to buy a package of onesies…and staggered into my apartment three hours later with bags hanging from my every appendage, bags containing things like baby Tylenol and tiny socks and a random package of bottles. Perhaps my blood sugar was low, perhaps it was the fine mist of acquisition-promoting chemicals they spray into the air at Target, but once I tossed that first pair of footed pajamas into my cart, there was no stopping me. I was too superstitious to do anything with my freshly acquired loot but shove it into a closet and sneak in to stare at it every once in a while, but it’s a start. I have a Boppy sitting in the NICU. I have the softest stuffed elephant ever made. We even have a crib, an honest-to-goodness crib for a baby.

Besides the aforementioned baby Tylenol I now own a barrel-sized vat of hand-sanitizer, Pampers SENSITIVE! wipes, Johnson & Johnson NO MORE TEARS! baby shampoo, a bulb syringe, two hulking air purifiers, and a baby first aid kit—the only thing missing is the plastic bubble. But I know there is more to stocking a nursery than rectal thermometers and stuffed elephants, soft or not (the elephants, not the thermometers). And it’s confusing: did you know you aren’t supposed to use baby oil or baby powder? I assumed that the “baby” prefix meant they were appropriate for the younger set, but no.

So let’s assume, for a moment, that Simone is going to continue staying alive and eventually come home to the room earmarked for her—what do I need? Rags, obviously, for assorted fluids. Twine to keep her tethered safely in her crib. Anything I am missing? What did you use, and what was a waste of money that could more properly be spent on cheese and gin?

*But Were Too Infertile to Ask

(7 spells of severe apnea) + (1 manual bagging) + (1 return from minimal O2 to High Flow) + (1 failed bladder tap) + (1 catheterization) + (1 blown IV) + (1 successful IV) + (1 blood culture) + (1 elevated CRP) + (1 dive off the preemie growth chart) + (2 mentions of “tracheostomy”) + (1 mention of “bronchoscopy”) + (1 mention of “g-tube”) + (1 dose of morphine) + (1 blue baby) + (3 doses of Narcan) + {1 oxygen tube accidentally disconnected during spinal prep and unnoticed until + (>toomany deep desaturations + >toomany minutes) later} + (1 lumbar puncture) = Thursday.

Morning.

So, how do you like the redesign? I seem to be all about fresh starts these days, and this particular new leaf was easy to turn over thanks to the very patient and talented Margot, who not only designed all this but also put up with my (patent pending) patois of perfectionism and clumsiness. When I answered questions about my color preferences with references to Swedish Pippi Longstocking movies and requested minute adjustments to specific letters in my header image, Margot gamely refrained from reaching through the screen to throttle me. And when I sent her an email with the subject line EMERGENCY! shrieking that the site had suddenly lost its formatting and wondering whether someone had hacked into my Very Important and Hack-worthy website or if a server had been felled by bears, she kindly informed me that I had deleted a vital curly bracket with my ham-handed CSS modification—but without mentioning the “ham-handed” part.
Incidentally, it turns out that curly brackets are the key to everything. I have seen this played out many times in the past week, and if ever I emerge from my apartment to find the world crumpled into rubble at my feet, I will know that surely there is a misplaced curly bracket in the Great Stylesheet in the Sky.
But the design is finished now, with the exception of the About page, and a good thing, too, because the world was starting to look to me a bit like this:

…Which is how you know you have been spending too much time up to your htmelbows in code.
Anyway, three cheers for Margot! Probably she could use a cocktail about now.

Actually, I could use a cocktail about now as well. Simone celebrated her two-month birthday yesterday by testing positive for MRSA colonization. Yes, that MRSA.
But before you start rolling in ashes and rending your tunics, let me assure you that this is not the same thing as a MRSA infection or (god forbid) MRSA sepsis. The MRSA is not in her, so to speak, it is on her, having set up a tiny utopian colony in her nasal mucous membranes. I have to say that hearing people say that your baby has been “colonized” is rather alarming, and I cannot help but feel that MRSA ought to GO BACK WHERE YOU CAME FROM. WE DON’T WANT YOUR KIND AROUND HERE. Suddenly multiculturalism seems like a terrible idea, at least when the cultures involved are methicillin-resistant staphylococci.

So now there is an isolation cart outside Simone’s room, and a sign on the door, and every nurse who enters wears a gown, and it just about breaks my heart. I feel defensive on Simone’s behalf, somehow, which is silly as it’s not like she contracted MRSA by being especially slutty. She previously tested negative, but after 60-some days in a hospital a baby is bound to catch something. I have been told that being colonized should not effect her health, and in fact a large percentage of the population is colonized without realizing it, meaning you, dear reader, could be harboring a colony right at this very moment. Doesn’t that make you want to take a quick shower? In bleach?

Yesterday went downhill from there. Simone had a positively medieval-looking eye exam (not the cunning miniaturized eye-chart I had been hoping for) and every time they touched one of her eyeballs, which were held open by tiny metal spiders, she let out a squall like a cat would if tied in a burlap sack with a wolverine. The exam showed beginning stages of Retinopathy of Prematurity (stages one and two), and while it’s nothing to worry about just yet, between that and the MRSA I was reminded that things are always popping up when you least expect them, and that there is a whole month left in which to fit a few more NICU catastrophes. I flew right back to the place where I used to live, the place where I am afraid to even imagine my baby coming home. And of course I know that if Simone does come home, there is nothing to say she won’t die of RSV or SIDS or by pulling one of our bookshelves onto herself (my god, I’m a laugh a minute today, aren’t I?). She is doing so well there is no reason for me to be so tiresomely morbid, but I can’t seem to help myself.
Lately I am thinking often of this family, who are facing something they likely never imagined. Babies should not get brain cancer. It is just…wrong. The lovely Emily is organizing support and donations, because if there is one thing those parents should not have to think about right now, it is money.

What I think about, mostly in the middle of the night, is how they will ever feel safe again. I wonder that too for myself, after everything that has happened in the past three months. When will I feel less like every moment with Simone could be my last? Will I ever be able to take her, just a little tiny bit, in the happiest possible way, for granted?

P.S. The first person to say something about hearts walking around outside bodies gets AN ANATOMY TEXTBOOK SOAKED IN HUMAN BLOOD.

From the ventilator, to rated CPAP, to normal CPAP, to a high-flow nasal cannula—all in 72 hours. Obviously my child is some sort of breathing prodigy, if you ignore the fact that the “all in 72 hours” happened seven weeks after her birth. But surely that is a minor detail. “Genius of respiration” it is!

She’s damn cute, too, even if she insists upon cheesy French music for her 60-second video montages. She says it’s because she’s not even supposed to be born yet.
Babies. Always with the excuses.

Dear Commenters on a Certain Childfree Site,

Hi! I don’t think we’ve met. I am the mother—excuse me, “Moo”—of the “hideous” “fugly” baby in which you have taken such a keen interest. I confess that this first part perplexes me, as I had always thought the childfree weren’t particularly interested in children, and yet here you are, reading about mine!
Speaking of which, I was shocked to learn that I previously had two other premature babies, both of whom, alas, died after birth. Sometimes when I am on deadline things fall through the cracks, but those really seem like the sort of events I should have made a note of in my day planner.

However it is the medical aspects of your discussion that interest me most. This machine Simone is hooked up to, the one that “circulates her blood or what not”—can you tell me more about it? I asked the doctor, and she didn’t seem nearly as informed as you all. In fact, she denied the existence of this blood circulator entirely! And another thing—you say I should not be permitted to provide medical treatment to my child “when it clearly will not remain alive for long.” I hate to interrupt what I am sure is a busy afternoon of crystal ball gazing, but I would love for you to tell me more about the specifics of my situation. I’m not terribly imaginative, and before now was relying mostly upon doctors and medical journals for information about my daughter’s prognosis, when obviously I should have been paying more attention to signs like being able to “see the veins in that thing’s head and chest.” Actually, I can see the veins in my own chest as well—I always assumed it was due to my natural pallor, but now I am concerned I may not be long for this world.

This morning, on my way from Simone’s room to the salon to have my hooves filed and polished, I overheard a woman at the hospital pharmacy picking up a prescription for her asthmatic son. Thinking of you, I followed her to the secluded parking garage and wrestled the medicine from her hand, reminding her that when it comes to children, “If their lives were meant to be, they will live and flourish!” Later I mentioned to one of the nurses your suggestion that she “go into the NICU one night and unhook the baby’s ventilation machine.”

After I outran security, I called Simone’s doctor.
“Listen,” I said to her, “I know I have been ‘insisting that you keep the poor thing alive–’”
“Actually, we resuscitate all babies born at your daughter’s gestational age.”
“Oh. But what about her ‘terrible disabilities?’”
“I’m not sure what you mean. Statistics show there is an excellent chance that Simone will be just fine.”
“Huh. Statistics. Any luck finding that blood circulator?”

Anyway, I mostly wanted to thank you for drawing my attention to the similarities between Simone’s medical care and “the Nazi experiment involving keeping a severed dog head alive via wires.” The resemblance is stunning, don’t you think?

The experiment you refer to was actually performed by Russians, but “Russian” doesn’t have the same zing as “Nazi,” and god knows as a professional composer of “attention-seeking drivel” I understand the importance of inflaming the passions of your audience.

So that’s all. I would go on, but I have a load of hairshirts to throw in the wash. Being a “martyr” doesn’t leave me much time for my writing. Besides, I am feeling a bit embarrassed about how “tacky” it is to “air my dirty laundry” in such a manner. Some people might say comparing me to a Nazi and my daughter to an artificially animated canine head is a bit tacky as well, but hey, what do they know?

Cordially,
Alexa

P.S. I think she’s beautiful.

P.P.S. How many kittens did you have to sew together to make those lovely caftans?

Simone lasted 22 hours on CPAP. Surprisingly, she had only one apnea episode—this time she remembered to breathe, but simply couldn’t do it well enough to clear carbon dioxide and keep her wee alveoli from collapsing. It was too hard; she was too small and her chest muscles too underdeveloped. But by god she tried. Almost no apnea means that at no time did her brain decide to give up and lie quietly until someone brought it an intubation tray and maybe a chocolate truffle. This, in my opinion, is an impressive feat. It shows that Simone’s central nervous system is maturing, and that she did not inherit my lazy gene. If she had a blog, probably she would update every day instead of scrawling a few notes on the back of a Target receipt and telling herself she will get to it later.

On CPAP Simone had to either keep something in her mouth or have it held closed with a chin strap, in order to prevent all the air rushing into her nose from rushing right back out again via her gaping maw. She was delighted to have her old friend the pacifier back, and practically unhinged her jaw in her eagerness to gnaw on it. She is a big fan of sucking, my daughter: on her hands, her feeding tube, her breathing tube, stray IV ports, cheap Domican cigars—I have a video of her chomping away on her Soothie that would make an excellent LOL Preemie (I’m in ur isolette, masticatin’ ur plastik produkts!!!).
So Thursday evening, post-extubation, I was sitting on the couch in her room not-writing when I heard a baby crying far away. Poor little thing, I thought, typing my name a few times and then erasing it, hoping the crying infant would grow up to do something sensible and leave the thankless business of writing alone. I heard it again, a sad, quacking cry, like the cry of an underpaid English major.

And then I realized it was coming from my very own baby.

I had never heard her cry before. I had seen her cry, mind you, her mouth a screaming O, her face red and her limbs striking viciously at the offending nurse. But now that her airway was free she could make noise—hoarse, because of the just-removed tube, but noise all the same. I lifted her isolette cover to find her pacifier fallen from her mouth and an arm groping the blanket for her lost companion. I slid it back between her lips and returned to my computer, only to repeat the whole process a few minutes later (lost pacifier, crying baby, delighted mother-slave to the rescue). It was amazing, just as it must have been when silent film was replaced by the talkies.

So those are the good parts of the CPAP saga. Simone got an A for effort for her 22-hour stint of less-assisted breathing, and I got to hear her voice for the first time (not that I was whooping with delight at her tears, you understand). I wanted to tell you these things before I move on to the next bit, the bit where I thought Simone had died while I was having my hair done.

SPOILER ALERT:
She didn’t die. She is fine, or as fine as a very angry two-and-a-half pound infant can be. I, on the other hand, am too tired to finish writing this entry, which is why you must wait until tomorrow for the rest of the story.

For now, allow me to placate you with a picture of my baby in a funny hat:

Saturday you were one month old. You nestled against me, one arm thrown companionably over my right breast, your feet pressing into my hand. When I spoke, your irises rolled toward the top of your head, looking for the source of my voice. Though I wish you were still safe inside me instead of running with the NICU’s fast crowd—digesting milk and developing a fondness for benzodiazepenes while your contemporaries bob lazily in their amniotic cocktail—part of me feels lucky to have these extra months with you. I would willingly give them up to ensure your health, but as that has not been presented to me as an option, I might as well enjoy this stolen time with my daughter of the softly furred shoulders.

On Thursday, my little gosling, the honking of your air leak had grown impossible to ignore, and your too-small breathing tube was removed. It was determined that as long as it was out, you ought to be given a chance to breathe without the ventilator, via CPAP. A hat was pulled onto your head and the attached straps used to secure a piece of tubing, a pair of prongs pressed into your nostrils, like so:

You were horrified. First we take a TUBE out of your THROAT, and then we strap some contraption into your NOSE? No. NO. Absolutely, a thousand times, NO.
You raised your hands and used them to push desperately at the tubing, all the while screwing your face into an expression of fury. More importantly, you clamped down with your chest, refusing to breathe and fighting every artificial breath the machine attempted to give you. Your oxygen saturation dropped, and then dropped lower still. Your nurse called for the practitioner and there was much sighing and headshaking by the respiratory therapist. You weren’t doing well, she said—snottily, I thought, fighting both my tears and an urge to force plastic tubes up her nostrils to see how she liked it. “Not doing well” was a phrase I had heard applied to you before, but this time it meant not that you were ill, but that you were failing, and I took exception.

It has been a long month for the both of us. I am nearly thirty years old, and there are nights when the unfairness of it all makes me want to lie on the floor and scream; at only thirty weeks, I thought you could be forgiven a fit of pique. While the nurses prepared for reintubation, I moved to the other side of the isolette and put my hands through the portholes to cup your head and feet. You were calming down, now, and taking a few breaths. I told you what a good job you were doing, in the same soothing voice I plan to use someday when helping you through things more complicated than breathing, things like bicycle riding and unrequited love. You began to breathe, breathe, breathe, and stop….and then breathe, breathe, breathe, and stop.
“You have to keep doing it,” I said, rubbing your feet to remind you.

Breathe, breathe, breathe, and stop…I massaged your toes, and could feel you thinking What, the lungs-in-and-out thing? I just DID that.

How exhausting it must seem: in and out, in and out, FOREVER. By now you were keeping your oxygen saturation in the low 80s, but it wasn’t enough, and the nurse practitioner disconnected the CPAP and pulled you from the isolette. She tipped your head back and swiftly slid a tube down your throat, larger this time to correct the air leak.

Back on the ventilator and doped up on Ativan and paralytics, your eyes drifted open. My good, sweet baby.

I promise you, it will get easier. All of this will get easier. It seems impossible, but someday your breath will be effortless, unnoticed. Someday we’ll both take it for granted. Until then, though, I will be right here, applauding your efforts and wishing I could do this for you. I suspect this is only the first in a long line of similar wishes.

I love you more each day, and happily you are to young to recognize that as a hackneyed sentiment. It is true, after all.

Love,
Your Mama

The big news today was supposed to be a trial of extubation. Simone has a large air leak around her tube that makes her sound like a flock of geese, probably because she has outgrown said tube and needs the next size up. So as long as they were pulling it out, quoth the neonatologist, why not give her a chance to try breathing like a big(ger) girl on rated CPAP instead of a ventilator? If it didn’t work, they could reintubate with the larger tube. After all, she is doing so well!
There was much rejoicing Chez Flotsam, and last night I forgot my usual call to the NICU when I was up to pump. As we drove to the hospital this morning I tried to amuse Scott with my Ramones-esque rendition of “I Wanna Be Extubated.”
You see where this is going, right?

Sometime after midnight the nurse changing Simone’s diaper found blood there. There was bruising above her groin, and one of her legs seemed less pink than the other. Her creatinine was up. By the time we arrived an ultrasound had been ordered, and within an hour my favorite nurse practitioner returned with the news: Simone has decreased blood flow to both kidneys, and what looks like a clot in her aorta, probably from the umbilical arterial catheter that was removed a few days ago. There does not appear to be anything obstructing blood flow to the renal vessels, so it may be that something is causing them to constrict. I got all excited and thought for a moment that I had solved the riddle and the answer was Dopamine (low doses increase blood flow to the kidneys while higher doses—like Simone is on—can vasoconstrict peripheral vessels) but they don’t think that is it, so there goes my career in neonatology. I guess Wikipedia and House episodes really aren’t enough.

A repeat ultrasound of her aorta was just done to see whether the thing the radiologist thought was a clot really is a clot, and we should have the results in a few hours. They are also trying for the second time to draw blood for labs: earlier it took sticks to several veins in her tennis-ball-sized head before they were finished, and then the sample clotted and was unusable. My baby also gets a bladder tap (her second), because they were unable to get a urine sample via catheter. Her respiratory status has worsened, probably as a result of stress. Her feeds have been stopped, and as for extubation? Ha.

If there is indeed a clot, she will be started on heparin, but that is not expected to dissolve the offending coagulation in the speedy and efficient fashion I would like—apparently these clots have a tendency to calcify. Or something. I was busy trying not to sob at that point in the conversation, so I will have to clarify a few points later. Anyway, the hope is that the heparin will reduce the size of the clot enough that Simone’s body can gradually get rid of it on its own, preferably without throwing deadly clotlets to her heart or lungs. Additionally, it would be best if this resolved before she permanently loses kidney function or, you know, her leg. How exactly the reduced renal blood flow is related to the possible aortic clot when there is no obstruction of the renal vessels is beyond my limited scope, but I imagine my daughter’s nephrologist will explain.
There is a phrase I hoped never to use: my daughter’s nephrologist.

Scott keeps reminding me that my happiness when things are going well is not an invitation to the fates to reduce our surroundings to rubble. Even though the evidence suggests differently, correlation does not causation make. Though I don’t suppose it matters in the end, as the result is the same: we are in a bad place. Send help.

Update, 7:00 p.m.:
So, according to the radiologist, the Thing In The Aorta is either a “thin clot” or a “fibrin sheath.” Though it sounds like a condom varietal, a fibrin sheath is actually a pre-clot that may have formed around the umbilical catheter and remained behind when the catheter was removed. Whatever it is, this Thing In The Aorta is not obstructing blood flow, and would not be responsible for Simone’s renal problems. Her clotting panel was normal. No word yet on what is causing the decreased flow to her kidney’s or her dusky and slightly swollen left leg. The thought at the moment is that the removal of the umbilical line sent a cascade of small clots into the bloodstream to wreak havoc. I hope to know more after rounds tomorrow morning.

I was carried to bed after my last post by a flock of tender bluebirds and fell asleep thinking of my daughter’s ears. At 4:30 am I got up for my nightly One Man Band routine, in which I double pump, eat two saltines, drink a glass of milk, check my email, and call the NICU for an update—all at the same time. But the news was not good. Simone was sliding precipitously downhill, and had maxed out the settings on the conventional ventilator (which does not actually mean that there are no higher settings, just that there are no higher settings that will not carry an unacceptable risk of lung damage) and had been placed on another machine, called THE OSCILLATOR. THE OSCILLATOR is the size of a sturdily-built sixth grader and sounds like a propeller plane trapped inside a four-foot metal cashbox. It is simultaneously more powerful and gentler, working by vibrating oxygen in and carbon dioxide out with hundreds of tiny, scarcely-inflating breaths. Traditional ventilators exert more pressure on the lungs by fully inflating them, and while Simone’s blood gases indicated she was not breathing well enough to maintain the appropriate balance of oxygen and CO2, her latest x-ray showed that her chest was expanding and her diaphragm dropping, and it was feared that any more pressure would cause her lungs to develop tiny tears, resulting in permanent injury. Arriving at the hospital that morning, we found nearly all of our daughter’s private room taken up by THE OSCILLATOR, and her body vibrating like a particularly violent Brookstone neck massager. At the time it was terrifying, but sadly it would prove the high point of the next two days.

Simone began to retain fluid, and her blood pressure dropped dangerously low. On Saturday morning her immature white-count was up, and she had the second septic workup of her short life. She swelled to over two and a half pounds, and by yesterday evening looked alarmingly like Lou Dobbs, her chin and cheeks bloated and unrecognizable. Her eyes were still shut and prizefighter-fat, and the formerly wrinkled skin of her legs was stretched to capacity. She barely moved. She had something akin to a baby version of OHSS, and was weeping fluid out of her cell walls and blood vessels, raising her heart rate and lowering her blood pressure while waterlogging the sponges of her lungs until they were too heavy to hold open.
All this from the shock of surgery. When Simone’s kidneys yawned their way out of their post-operative haze, they startled and said “Good heavens! Our body has been cut open! Probably we will be losing a lot of blood, and should hold on to all the fluid we have!” This was an error in judgment on their part. The key to Simone’s respiratory problems and fluid retention was simple: urine. Lots and lots of urine. But her kidneys refused to comply.

And so my daughter received her six millionth blood transfusion, along with platelets, Lasix, Dobutamine, Dopamine, Morphine, and Hydrocortisone—not to mention her usual Ativan, caffeine, TPN, lipids, and whatever else they shot into her PICC line and peripheral IV after I lost track, too busy tending to my own Ativan dosage and staring at the monitor, willing the numbers upwards.

Each time I changed Simone my heart pounded as I set the diaper on the scale to measure her output. It was never enough, and by 2:00 yesterday afternoon she had stopped wetting her diapers altogether.

“She just needs to pee,” the nurse practitioner repeated grimly that evening.
“Has anyone thought of putting her hand in a bowl of warm water?” I asked the assembled neonatologist, nurses, respiratory therapist, and my mortified husband. I tried to smile while I said it, but it came out sounding desperate, revealing that I wasn’t really joking at all. Honestly—had anybody tried that? I was out of ideas, and Simone’s latest x-ray showed her lungs almost completely collapsed.

At two o’clock this morning I jolted awake and called the NICU. Simone was now on 100% oxygen on THE OSCILLATOR and still dropping her sats. But she had peed a small amount, and I tried to leverage that fact into some reassurance.
“That’s something, right? This will start to resolve, eventually?”
They hoped so. Maybe. But they were worried. Concerned. She was very sick, my little girl, much sicker than they had expected her to be after surgery. She couldn’t sustain this course for more than another day or two. The gist being: My baby might die.

I sat in bed after that holding the phone and decided that if Simone didn’t make it, I wouldn’t either. I imagined sneaking her out of the NICU under my coat and running away, just the two of us, to a cave somewhere, where I would nurse her back to health with cool compresses and tisanes made from bark and toadstools. And if she died, I would stay in that cave holding her until I died too.
It’s best not to think too much in the middle of the night, because that is the sort of thing you come up with. So I took a tranquilizer and curled up in bed with one of Simone’s dirty blankets, my face pressed into it like an animal.

This morning I got to the NICU at 7:00. Simone’s blood pressure was back up thanks to a stress dosage of Hydrocortisone and her heart rate was down. She was still on 85% oxygen on THE OSCILLATOR, but had soaked her last diaper with 50 milliliters of the sweetest baby urine ever to stain a polyacrylate absorbent. At 8:00 she did it again; I grinned pulling the swollen Pamper from under her bottom. Her x-ray was like that of “a different baby” (presumably a much healthier one), and her blood gases were beautiful. Her cultures were negative at 24 hours. My daughter’s limbs resumed their furious waving.
The biggest change, though, came when she was reintubated. The breathing tube they removed was covered with sticky green lung secretions, and almost as soon as the new tube was in, her sats shot up and her oxygen could be turned down. The old tube was passed during rounds, garnering exclamations of wonder and disgust. And that slender piece of plastic tubing reduced me to the terrified—and finally, relieved—tears I had been holding since Friday morning.

As of now, Simone is down to 33% oxygen on THE OSCILLATOR and well on her way to moving back to the conventional vent. I cupped her in my hands this afternoon while her sats stayed steady and she pressed a foot against my palm. I meant to tell her how we almost lost her and that she was never, ever to frighten us so again, but I couldn’t say anything except what a good, brave baby she was and is. We aren’t out of the woods just yet, but the trees are thinning, and I am starting to see signs of civilization.

This afternoon Simone will be having surgery to close her PDA, an errantly open blood vessel between the aorta and pulmonary artery. This surgery is being touted as The Thing That Will Make Her All Better, and in theory it sounds like an excellent idea. This open vessel is dropping her diastolic pressure and filling her lungs with fluid. It is impeding her progress on the ventilator, and has in fact resulted in increased oxygen needs. Two rounds of medication have failed to change the size of the opening one whit. I have no doubt that a cohort of Magic 8 Balls asked whether surgery is the best option would agree that IT IS DECIDEDLY SO.

Except…she is so tiny. They say her heart is the size of her fist, and her fist is the size of a small peanut M&M. Simone is really not much bigger than the bulbous nosed man on the Operation game board, and as I recall, that game was exceedingly difficult, even when extracting something as large and easy to grasp as, say, the Bread Basket. Admittedly, I did not have advanced surgical training back then (not to imply that I do now, though I have seen my share of televised medical dramas)