The Golden Ticket.

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.