12/08/2004

How is Charlie?

Some of you have asked how Charlie is. The following is a jargony, preemies-for-dummies way of saying that Charlie is doing very well.

Our immediate concern was his breathing. At almost 30 weeks, without time for a course of steroids, without some condition of stress that might have hastened their maturation, and with the complication of gestational diabetes, his lungs were still nowhere near maturity.

Charlie had RDS, respiratory distress syndrome, the term for breathing difficulties caused by a lack of surfactant. A baby's body naturally produces this substance, which holds lung passages open, preventing them from collapsing upon exhalation, but not until the last few weeks of pregnancy. These days, most babies with RDS survive. Since the introduction of exogenous surfactant in the late '80s, survival rates for premature babies have increased dramatically. Natural forms of the substance are derived from cows and pigs; while a synthetic version is also available, Charlie was introduced to the many delights of pork in the very first days of his life.

While two doses of surfactant are the normal course of treatment, it just wasn't enough for Charlie, who needed another hit. And while he'd started out on room air, which is 21% oxygen, it quickly became apparent that he needed more assistance. His oxygen level was increased as high as 37% during his first two days.

He didn't need the full support offered by a ventilator, but he was started on CPAP immediately. CPAP stands for continuous positive airway pressure, and is a fairly benign form of respiratory assistance: a baby on CPAP initiates every breath himself, while the pressure of the machine keeps his airways open as he exhales. The pressure is delivered via a tiny snorkel-like affair with two prongs that fit into his nostrils.

(For the record, Charlie has somehow come to the fervent and unshakeable belief that the snorkel sucks ass.)

Charlie also had a heart murmur caused by PDA (patent ductus arteriosus), a condition common enough in premature babies that 40-50% in his age bracket will have it. While a baby is still in utero, a large blood vessel in the heart remains open; it's expected to close within the first few days after a full-term birth. For premature babies with distressed lungs, it's important to get the vessel closed to avoid extra strain on the heart. Treatment with a drug called indomethacin can generally close the vessel, and if that doesn't work, it can be surgically closed.

Evaluations and treatments were all taking place on Sunday, while I was only vaguely aware that it was happening. I've lost most of that day, except for memories of my mother's arrival and my visit, at last, to the NICU. I was to be moved out of labor and delivery late Sunday night, so on the way to the regular maternity ward, my bed was carefully steered into the NICU so I could see Charlie.

I didn't see much. My bed was too low and I was too busy crying. But I could see his tubes, his wires, and the bright glare of the phototherapy lights being used to combat jaundice. I could also see he was alive. I was scared that night, more scared than I've ever been in my life, but that fear has receded as the days have passed. The joy almost always eclipses it.

Charlie has steadily improved. After medication for PDA, his heart murmur seems to have vanished. He hasn't needed supplemental oxygen in days. He's still on CPAP most of the time, but he's being kept off it for longer and longer at a stretch — today he was off for almost five hours, his longest time yet. He's had his first bath, his first bowel movement, his first taste of milk. He's worn his first scaled-down onesie, and is kept company in his isolette by his first stuffed animal. Paul and I hold him. We pretend his involuntary grimaces are smiles.

He is small and thin but fast closing in on his birth weight. He is a well-oxygenated pink, furred here and there by a long, light down. His head is perfectly round and fuzzed with a brown lighter than Paul's or mine. His ears are the size of my thumbprint. His foot is shorter than my pinky. He has the smallest human reproductive organs I've ever seen.

We've started to think he's cute.

05:53 PM in Charles in charge | Permalink | Comments (168)

12/09/2004

Since you asked

Are you still in Connecticut?

Yes. Paul and I have settled in to stay for as long as Charlie does. We're about 200 miles from home. Paul's aunt lives in the area, and my friend T. is about an hour and a half away. Otherwise we know no one. I spend a lot of time thinking about how strange it is that our son was born in a place where we have so few ties.

We're at a hotel that offers a kitchenette; atrociously unreliable wireless Internet; unpredictable and infrequent housekeeping; and a cable lineup distinguished only by several channels of what Paul calls HBTV — hillbilly TV, which features one or more of the following:

  • motorcycles;
  • hot rods;
  • tattoos portraying either Jesus (crown of thorns optional, eyes-rolling-back-in-head mandatory), a busty woman, or a pissed-off Tweety Bird;
  • no women, aside from the aforementioned flesh-based renderings thereof, or stylized nipply silhouettes silkscreened on T-shirts or airbrushed onto gas tanks;
  • extravagantly coiffed facial hair; and
  • at least one chinless cast member speaking in an unintelligible southern patois.

What about getting Charlie moved closer to home?

We started discussing about this before I was even allowed out of bed, while I was still involuntarily scratching myself all over as if I had nosocomial mange. The doctors here are aware — perhaps hyperaware — of our desire to have him in a hospital near where we live. They talk about it more than I do, solicitously and kindly but with warning after warning about not moving him too soon. I've had to reassure them that we don't expect Charlie to be moved, don't want him to be moved, until he's stable. "Until a week after he's stable, in fact," I keep muttering under my breath, trying to pass off my crazed-she-bear-protecting-her-clawless-cub rictus as a beatific maternal smile.

The first step is to get him off CPAP, where he no longer needs mechanical assistance to keep his airways open. If he continues to improve at his current rate, he may be off it as soon as the end of next week. If his progress stalls or he has a setback, it's anyone's guess.

The second step is to figure out how to transport him. It seems like a simple feat; every day, sicker people than Charlie are taken farther than he'd need to go. The difficulty, however, is not a logistical one but an administrative one. First, the transport team at our nearby hospital won't come get him — we are currently far beyond their radius for pickups. Second, our insurance company is not especially interested in paying for a transport they don't consider medically necessary.

What's most likely to happen is that the hospital here will send an ambulance to take Charlie home, staffed by one of the NICU nurses to watch over him during the trip. It is probable that we'll have to pay for this up front and fight with our insurer about it later. The money seems unimportant just now. I am currently looking into selling a kidney on eBay to cover the costs, as soon as I can figure out how to take photos of it. (Would you bid on a kidney without seeing full-color, high resolution pictures?)

How are you recuperating after a dangerous, sudden-onset illness; an emergency C-section; and five days in the hospital?

Fabulously, thank you. Directly after Charlie's birth, my recovery began -- delivering a baby is the only cure for pre-eclampsia and HELLP, and it is most frequently an immediate one. At the time of my release I was told I needed no further followup beyond a two-hour glucose tolerance test in a few weeks. (I am avoiding describing it as my hospital discharge; I shudder every time I see the big sign in the parking lot that directs visitors to MATERNITY DISCHARGE.)

The only lingering effect has been fatigue. Five days in bed, even when you're getting up periodically to stumble down the hall to the NICU, or more frequently to change the giant maxi-pads intended to absorb the MATERNITY DISCHARGE cascading down your legs every time you stand up, ruining the only pair of socks you have, staining the grout between the bathroom tile, making great clotty puddles that cause the janitor to slip and break his femur in two places, spawning a river of gore that rises so fast it drowns the hapless Latino family gathered outside the nursery to wave at their own newborn...

Where was I?

Oh, yeah. Five days in bed will tire you right out. After my first postpartum shower, I crawled right into bed and slept for an hour. Today, twelve days after Charlie's birth, I am not so easily exhausted, and can manage a turn around an entire grocery store without having to send Paul back to the entrance for one of those electric scooter carts. It's progress.

I no longer look pregnant in the slightest now, if the shocked saleslady who showed me nursing bras is to be believed. But then it was only in the three weeks or so prior to Charlie's birth that I'd even really started. I'm tall to begin with, and Charlie was transverse, so while I was somewhat wider, I wasn't that much deeper. Besides, my magnificent rack minimized the prominence of my belly, creating a chiaroscuro so masterful Caravaggio weeps in Heaven.

My incision, speaking of things that might weep, is healing nicely. It's numb and stubbly and my belly still bears a faint yellow shadow of bruising, but there's no lingering pain, either from the cut or from the parting of the muscles beneath. Out of my prescription of 30 Percocets, I took one, and am carefully hoarding the rest.

They'll certainly come in handy for my upcoming nephrectomy.

04:40 PM in Charles in charge | Permalink | Comments (55)

12/20/2004

Today's assignment

I will not Google "premature babies infection."

I will not Google "premature babies infection."

I will not Google "premature babies infection."

08:08 AM in Charles in charge, Welcome to the bad place. Population: You | Permalink | Comments (48)

12/21/2004

OH, MY GOD, et cetera

Paul is so much more low-key than I am. I would have begun his post with, "OH, MY GOD, OUR BABY ALMOST DIED."

Instead I'll begin my post that way. OH, MY GOD, OUR BABY ALMOST DIED.

Yesterday we were awakened early by the ringing phone. It was a physicians' assistant from the NICU, and the call began innocuously. "I just wanted to warn you that we've put Charlie back on CPAP so that you're not alarmed when you come in." But the news got worse from there: they suspected Charlie had an infection.

The overnight team had noticed Charlie was having more desats, periods in which his blood oxygen saturation dipped. His color wasn't good, and he was less active than usual, meaning he didn't squirm or scream when his diaper was changed. They'd taken some blood for a culture and started a course of antibiotics. They'd stopped his feeding until his condition improved.

The doctor called a bit later to repeat what the PA had told us. He planned to remove Charlie's central line, an intravenous catheter placed in a large vein in his arm. Its advantage is that you can leave it in place for a long time, like when a baby is expected to need IV nourishment and medication for a while. Its disadvantage is that it can provide a convenient route for infection to set in. Charlie's line had been placed a few days after he was born. After three weeks, it seemed its sterility had been compromised.

We went to the hospital and sat by Charlie while the antibiotic dripped into his vein. Once again it was hard to see his face between the CPAP tubing and the hat that held it in place. He'd been undressed so that the nurses could keep a closer eye on his color and his breathing. He was splayed on his back, not in the compact midline position he seems to find most comfortable. Except for a slight difference in size, he looked just like he had on the night he was born. Noticing that, I got scared.

We watched as the central line was removed. The catheter was about the diameter of a single piece of thin spaghetti, and it had been threaded deeply into Charlie's tiny arm. The PA pulled it gently and smoothly. It kept coming and coming. And then it was out, and the opening was cleaned and dressed. Charlie's arm was now free of the splint that had protected the line — the first time we'd seen his left forearm in weeks.

He didn't move much as we watched him. His CPAP apparatus bubbled. A blood transfusion was ordered. He slept. I cried.

Around 2, Paul and I left the hospital for a break. On our way out, we ran into the doctor who'd called us earlier. All I remember about what he said was this: "This is really tough...but he'll go home with you."  And that was the first time the seriousness of the situation sank in. It finally occurred to me: Wait, you mean there's a chance he won't?

Yes.  But instead of drafting chapter 1 in OH, MY GOD, OUR BABY ALMOST DIED for Dummies, I will simply revise and reiterate yesterday's vow: I will not Google "bacteremia preterm neonate."  I will not Google "bacteremia preterm neonate."  And don't you do it, either.

When we got back to the hospital later, we were told he was doing better. He was having his vital signs taken again, the blood pressure cuff fastened around his upper arm, the little Brookstone vibrator moved around his chest to loosen any mucus in his lungs. And he was angry. He screamed and screamed, more vigorously than I'd ever heard. I was initially pleased, thinking this meant he was feeling well, mustering enough energy to yell.

And then he simply stopped breathing. After a moment of yelling, he'd be so worked up he didn't draw a breath. The nurse rubbed his feet and he started again. Then he'd yell. Then he'd stop breathing. She'd rub, he'd breathe. Spells of apnea aren't unusual in premature babies; in fact, they're often normal, since the parts of the brain that regulate breathing can still be immature. But when the apnea sets in only after a baby has gotten sick, it's troubling. And when it's not a single isolated event every few hours but a string of apneas one right after another, it's especially troubling.

The nurse went to call the doctor. Paul and I watched Charlie's chest rise and fall. When it didn't, we rubbed his feet, wiggled his fingers, tickled the soft skin on his belly — all the things you don't normally do to a premature baby for fear of overstimulating him.

We stimulated the hell out of that baby.   We rubbed, he gasped. I cried and swabbed my nose with rough hospital paper towels, then raced over to scrub my hands before touching him again.

After a couple of hours, with a course of caffeine percolating into his new IV, he started to breathe more reliably. It was a good time to do the spinal tap the doctor had ordered to rule out meningitis. Paul and I waited outside while it was done, then anxiously sprinted back to Charlie's isolette to make sure he was still breathing.

Not only was he breathing, he was sleeping comfortably, lying on the side he prefers, tucked snugly in a soft white blanket. We watched him sleep for half an hour longer, then dragged ourselves home (ha, "home") to wait for the preliminary results from the spinal tap.

The news was good. His white cell counts weren't elevated. The culture results wouldn't come in until morning, but by then we'd know what the pathogen was, anyway — a normal white cell count was all we needed to see to rule out meningitis. We ate a late supper and a lot of cookies and slumped into a grateful, exhausted sleep.

This morning as soon as I woke up I called the hospital to see how Charlie was doing. The nurse said he was much better, and told me they were going to restart his feeding. I told her we'd be there for it.

When we got to his isolette, the nurse handed me Charlie's first bottle ever. No hat, no cannula, no syringe screwed to the end of his feeding tube. Just the baby, a blanket, and a bottle, which he sucked back eagerly. Then he immediately fell asleep, breathing comfortably and regularly on my lap for the next hour and a half, Gram-negative rods be damned.

On our way out, we saw the doctor again, who looked grave and said, "You know, yesterday he looked really bad. We were pretty concerned..."

I held up my hand to stop him and said, "I can't listen to that right now." I can't hear how bad it was until the danger has completely passed. I am still too aware that OH, MY GOD, OUR BABY ALMOST DIED to have that notion confirmed.

06:04 PM in Charles in charge, Welcome to the bad place. Population: You | Permalink | Comments (126)

01/06/2005

TGIF

Friday Charlie will be discharged from the hospital and we will undertake the long trip home.

The car seat has been purchased and secured, and Charlie has been tested in it and found fit for travel. The gas tank has been filled. The tires have been checked. The diaper bag has been packed. The weather has been deemed favorable. The cell phones have been charged. The car is in the process of being loaded. The father is in the process of getting loaded.

As I contemplate what lies ahead, only one question remains:

Is it too late to opt for a homebirth?

10:42 PM in Charles in charge | Permalink | Comments (70)

01/07/2005

Note from the road #1

Paul driving, Charlie sleeping, Julie watching. 5 miles down, 999,995 to go.

10:17 AM in Charles in charge | Permalink | Comments (32)

Note from the road #2

Seeing me pump in the back seat has cured a whole generation of truckers
of the impulse to yell, "Show us your tits!"

11:15 AM in Charles in charge | Permalink | Comments (39)

Note from the road #3

Staring at sleeping Charlie, thinking very hard of Tertia, Adam, Kate, and Marko.

01:14 PM in Charles in charge | Permalink | Comments (1)

Note from the road #4

Charlie and I are playing punch-bug. I am winning, 13-0. He is a sore
loser: he cries every time I score a point.

But why?

God, he's such a baby.

02:19 PM in Charles in charge | Permalink | Comments (5)

Note from the road #5

The eagle has landed, and, boy, has it made a pantload.

07:24 PM in Charles in charge | Permalink | Comments (26)