Flotsam

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.