Why we are not in the car right now
When you give birth in a hospital under ordinary circumstances, you usually have the opportunity to room in with the baby during your stay so you can get used to taking care of him under the helpful supervision of the nurses. At this hospital, the baby stays in your hospital room in a convenient wheeled cart. (I assume this is so you can imperiously bark, "Whisk him away! Off with his fuzzy round head!" when you and he have a difference of opinion about just how much noise one tiny person should be allowed to make.)
When you have a child in the NICU, you don't have the same chance. But many NICUs, including this one, have made provisions for new parents who need that support. Here there's a parents' room within the unit, complete with full bath, Murphy bed, and an "occupied" sign on the door that everyone from the janitor up pointedly ignores. If anyone has been scarred for life by the sight of me laboring pendulously over the breast pump, they deserve what they get for not knocking before entry, and I do not apologize. You hear me, man-from-building-engineering-who-came-to-change-the-light-bulbs?! I do not apologize.
So Paul and I loaded the car, moved out of the hotel, and took over the parents' room on Saturday. Charlie's little cart was wheeled in with us. At last his monitors were disconnected and we became the thrilled and terrified caretakers of a wireless baby boy.
It was wonderful.
We woke, fed, and diapered Charlie on schedule. (The warning, "Never wake a sleeping baby," doesn't apply to premature babies since their hunger doesn't reliably awaken them, you have to do it for them to be sure they don't miss a feeding.) We got up a thousand times when he gurgled to peer anxiously into his sleeping face. We watched him make comfortable sucking motions in his sleep. He did well. He slept and he ate and he grunted and squeaked, making very little fuss except during grievous indignity of a bath. In short, we were normal parents I know what you're thinking, Tertia, you asshole, so wipe that smirk off your face right now, young lady and he was a normal newborn.
Yesterday the nurse came in wheeling a monitor or as my friend T. would say, wheeling in a PLOT DEVICE just like the one he'd been attached to out in the main area. He should have been plugged in the whole time, the nurse explained, instead of being allowed to go without monitoring hospital policy, since he was still, after all, a patient on the unit. So after several hours of being a cordless rechargeable baby, Charlie was plugged back in.
It is almost impossible not to watch a monitor when it's giving you feedback of that nature. But I was determined not to: Charlie was fine, breathing well, pink and well-oxygenated. I mostly ignored the screen; there's no need to watch the moment-by-moment numbers, especially since these monitors are equipped with enough alarms and flashing lights that you think you're in Las Vegas hitting the motherfucking jackpot when one of them detects an anomaly. The moment one goes off I start swiveling around on my stool looking for a leggy waitress to bring me a free but watery (but free!) drink.
Charlie's didn't go off, and hadn't in any meaningful way since December 24.
Last night, while I stayed with Charlie, Paul went back to the hotel, finished loading the car, checked out, picked up dinner, and filled up the car with gas. He got back in time for the 8 o'clock weighing and feeding, after which we tucked Charlie in and settled in for the night, Paul behind his dinner and I behind the breast pump.
And then the monitor alarm began to sound. Motherfucking jackpot.
The flashing indicator on the monitor went from "slowed heart rate" to "severe bradycardia" almost instantly. Bradycardia is a slowing of the heart rate, generally defined in premature babies as a rate of fewer than 80 beats per minute. Charlie's breathing had slowed dramatically and his heart rate had dropped. Paul jumped up and stimulated Charlie, which brought his heart rate and breathing back to normal very quickly. Charlie's heart rate is normally in the 130s and 140s; at his slowest, he was down to 58 beats per minute.
Bradys (and they are so endearing that they need an affectionate nickname) go hand in hand with apnea and are common in premature babies due to immature respiratory centers in the brain. They usually occur simply because of this immaturity, but can have other causes, too scary things like illness, infection, and seizures, in addition to less alarming and transient causes like the strain of a bowel movement, or reflux, which Charlie has.
Bradys will also fuck up your plans but good. For the most part, a hospital won't discharge a premature baby until he's gone a certain number of days without any spells of apnea or bradycardia. There are exceptions, and then the baby will go home on a monitor. Charlie is not one of these exceptions. His episode last night reset the clock, buying him at least another five days in the hospital.
Once we'd spoken to the doctor, we said good night to Charlie, gathered our belongings from the parents' room, and retucked the Murphy bed back into its cabinet. We trudged out to the car carrying Charlie's car seat and the bag of clothes I'd packed for him to wear home. We came back to our hotel where Paul had checked out only a couple of hours before and moved back into the very same room, before it had even been cleaned.
Charlie got a cat when he was a few days old. Because we were in limbo, in a hotel with few of our belongings around, we weren't able to furnish Charlie's isolette with any of the personal touches parents like to add — photos of home, a special blanket, a CD of favorite lullabyes. I'd read that premature babies shouldn't be stimulated too much, so I didn't worry that Charlie's plastic box wasn't very cozy. I was surprised one day to see that one of the nurses had taped up a picture of a dog, a black and white graphic, the kind infants are supposed to see earliest. She'd written on it in black marker, "Charlie's dog!" The next time I saw the nurse, whose name was Carol, I thanked her. "Well, a boy needs a dog," she said in mock indignation. I told her we had cats instead. The next time I went in after she'd taken care of Charlie, I saw she'd taped a new picture up on the other side of the isolette. It was a cat, in the same high contrast style, helpfully labeled, "Charlie's cat!" I swear to God Charlie preferred to look at the cat. When he was put to sleep on his back, he'd turn his head toward the cat. When he was placed on his side facing the dog, he would inevitably end up on his back, head turned toward the cat. He'd look at it, eyes wide, brow furrowed, clearly seeing something. Charlie liked that cat.
Because Charlie's lungs were in such bad shape, I worried about bringing him home to a house with pets in it. The preemie book I'd read, which I highly recommend but hope to God you'll never need, cautioned against it, citing possible irritation from dander and pet hair. I asked one of the neonatologists (which I can never pronounce, so I usually say "the wee tiny baby doctor" instead) about the cats: would it be safe for Charlie to be around them? "Don't get rid of them!" he said in alarm. But I wasn't proposing to; I'd thought of something less drastic like having them shaved and dressing them in fetching little velour suits, perhaps with "JUICY" emblazoned across the ass, just above the tail-hole.
The cats spent the first couple of days avoiding the bedroom. They would creep in silently when Charlie was asleep, slinking low to the floor, ready to back away hastily at his first gurgle. The younger one, the one I fondly call Nutless, was brave enough to sit up on his haunches and peer through the mesh of Charlie's bed, but still chicken enough to flee, claws skidding spastically on the hardwood floor, when Charlie made a noise. A few nights ago when everything was quiet, I was sitting in the den feeding Charlie. Nutless crept in, hopped warily onto the sofa, and advanced far enough to sniff the back of Charlie's fuzzy head. Sniff. Sniff sniff. And then... Lick lick lick lick. Since then, the cats have been largely unconcerned by Charlie's presence. I can only conclude that Nutless tasted baby, and found him unobjectionable.
As we were leaving, one of the nurses saw me removing the dog and cat from Charlie's crib to take home as a souvenir. She brought over a new book of pictures, including the dog, the cat, and several abstract patterns, so I could show them to him at home. As soon as we'd settled Charlie in for his first nap at home, I pinned a new cat to the side of his bed. He likes it very much.
I smile when Charlie cries.
He doesn't cry much. When we change his diaper and the cold air hits his bottom, he yowls. When we haven't anticipated his hunger in enough time to speedily deliver the goods, he grunts, frets, and makes little stuttery noises that make him sound like a tiny pissed-off sheep. When we bathe him, he sounds the alarm and people all over town anxiously scan the skies for a glimpse of the Luftwaffe, clutching their ration coupons in a white-knuckled fist as they file into the goddamn bomb shelters.
And I'm right there smiling.
When Charlie had his infection in the NICU, the sign the nurses noticed was that he wasn't protesting vigorously when they checked his vital signs which were normal or changed his diaper. "He's normally downright pissy about it," one of them told me later, "so I could tell he wasn't himself."
And indeed he was not. Charlie had sepsis, a blood infection caused by Enterobacter, a strain of bacteria that live in the intestine. The mortality rate among low birth weight infants infected with Gram-negative bacteria like Enterobacter is in the neighborhood of 36%.
Without a fever, without much else to go on, his decreased activity was the only real sign that he was ill. The NICU nurses are generally assigned to the babies they've worked with and know well, a practice called primary nursing. They knew Charlie normally yells, and noticed when he didn't. This knowledge of our son, the knowledge that he dislikes being inconvenienced and registers his displeasure accordingly, quite possibly saved his life.
The day before we left the hospital, the doctor who was treating Charlie during his infection stopped by to say goodbye. We reminisced a bit about the good times "Hey, remember when you told us you didn't have a crystal ball?...Yeah. You remember. Fucker." Yes, we sighed with nostalgia over those golden moments, those halcyon days. And then he said to us, in a tone of some wonder, "You know, Charlie was really knocking on the pearly gates."
Knocking. On the fucking. Pearly gates.
I love to hear our baby cry. It fills me with relief and joy to know he's unhappy with his bottom exposed, to watch him wind up for a yell as I pour warm water over his naked chest, to hear his cranky lamb sounds as he "eh eh eh"s before his bottle. I'm grateful for every mutter, thrilled by every snit, because they're normal. He's normal. In these moments he is very much himself, and I am very much in love.
Even cow girls get the blues
Man, this guilt thing starts early.
I don't think any parent is immune, but mothers of premature babies have some fairly specific reasons for it. Some, for example, feel guilty because they fear they did something cheating on bed rest, moving that heavy laundry basket that brought about birth too soon. Others feel guilty because they don't immediately bond with that scrawny creature in the isolette who doesn't yet look like a baby. Still others feel guilty because they can't give their babies breast milk when they need it so very badly.
And others, selfish others, feel guilty because they don't want to.
Well, this other does, anyway.
I've been feeding Charlie expressed breast milk because he's yet to get the hang of getting it straight from the source. I pump at least seven times a day, hunched over a machine that makes a rhythmic wheeze as it pulls my nipples (normally the shy, retiring sort) into alarming purple torpedoes. When I'm not actively pumping, I'm guzzling water before or cleaning the pump parts after. I pump while I'm on the phone, and I pump while I'm online. In fact, I'm pumping right now while Paul feeds Charlie lunch.
Yes. While I am expressing milk, Paul is helping Charlie knock back the previous batch.
This does not seem especially efficient. It offends my sense of order, which is born out of a laziness so profound that it's a wonder my cells haven't hired a service to do the dividing for them. But more than that, it feels deeply fucked up to hand Paul the baby, the baby I'd been enjoying, saying, "Can you take him now? I have to go pump."
Can you take Charlie, whose head fuzz I've been dreamily rubbing with my cheek, so I can go do something I hate?
Plus, for me, pumping hurts. You know what they tell breastfeeding mothers who have sore nipples, fissures, infections? "Check the latch." You know what they tell pumping mothers, whose latch is robotically impeccable? "Huh. Weird. Well, it shouldn't hurt..."
Yeah. Hey! Thanks for the help!
My nipples hurt all the time. It's gone on for twenty-four hours a day for the last seven weeks. "Imagine, if you will," I said to Paul today, and described the situation to him with relish.
"I'd rather not," he said resentfully, "but now I can't help it."
Feel the love, people, feel the love.
So you'd think the desire to eliminate the middleman would motivate me to get Charlie established in breastfeeding. But I have to confess I'm not too eager to do that, either. Every time I put him to my breast it ends in screaming. He screams because he's frustrated and hungry, and I scream because while his mouth is refusing one nipple, the other is invariably being buffetted by some angrily flailing body part of his.
Besides the pain, I'm tired. I don't mean I'm physically tired, although I am, God, I am; I mean I'm weary in my soul. After everything that's happened, I am ready for something to be easy, a no-brainer, a gimme. Breastfeeding won't be, since Charlie apparently has a colorful assortment of mental blocks either that, or he has inherited my laziness. (Note to self: next time consider donor eggs. Oh. Wait.)
Switching to formula? Now that would be easy. I think of it a thousand times a day, most wistfully when Paul is asleep between the midnight and 8 AM feedings, when I'm up to pump, feed Charlie, then pump again. Yesterday Paul said, "I wish I could do more to help." Yet he balked when I made a simple suggestion. Suuuure, he wants to help.
I can't give up, though not yet, and probably not soon. How can I? I understand the importance of breast milk for any baby, and I know it's even more advantageous to premature babies who need an extra boost when it comes to immunities and brain development. If Charlie hadn't had such a shaky start, if he'd been full term, if my milk supply were no longer equal to his needs, I might feel differently. But given the circumstances, I believe if I can give him milk, I should. And I can. So at least for now, I will.
Parts of me don't want to (specifically, my freakishly distended nipples). But pumping won't kill me. Neither will being patient while Charlie learns. I can tell myself I'm doing it for him, and I am, but I'm also doing it for me: I can't subject myself to the guilt of not doing it. The guilt of not wanting to is bad enough.
I am the worst mother ever and here is why.
You know how people go on about how sweet a new baby smells, how satiny-smooth their pink cheeks are, how adorable their clean little outfits are? Not my baby.
Right now Charlie is tucked snugly into his co-sleeper, wearing a damp sleeper with spit-up on its feet, lying under a blanket stained with vitamin drops, on a sheet that's splattered with coffee stains. (Mine, not his. He's more careful with his sippy cup than his clumsy and bleary-eyed mom. And, no, I did not spill it in his bed while he was in it, so if you were picking up the phone to dial child protective services you can hang it right back up, yo.)
He has a crusty line of dried milk in the crease between his lower lip and his chin, and I would bet good money his diaper was full before I put him down to sleep. He is filthy, our boy, but will not have a bath today. My baby kind of smells.
Worst. Mother. Ever.
You would think that someone who worked so hard to have a baby would take better care of the one she finally got. People who have children after infertility are often regarded, at least by themselves, as more concerned, more attentive, and more appreciative parents than those who conceived without heroic measures. So you'd think I'd at least be after him with a wipe every now and then.
But I am finding the parenting strategy that works best for me is this: If it's not bugging him, it's not bugging me. The collar of his suit may be sodden with milk, but if it's not touching his skin and causing irritation, it's more trouble than it's worth to change it. He may have just mustered a diaperload so massive it's awaiting designation as a Superfund site, but if he's nodding off to sleep I'll be damned if I'll wake him up to change it. He may carry the whiff of sour milk and baby shit, but if it doesn't stop me from burying my nose in his neck and it doesn't I'll attack that soft, smelly flesh with kisses instead of a washcloth. If it's not bugging him, it's not bugging me. (Dressing him in a pink suit yesterday, however, did seem to bother him, so I will regretfully be returning the tutu that I got on crazy mega-sale.)
It's more important to me that he be tranquil than that he be pristine. When a bath still makes him squawk, he need not have one every day. When a diaper change wakes him up from a milky stupor and makes him yowl, he can go a few hours without one. I like him clean, freaked out and damp after a bath, but I like him peaceful more.
And we get along well this way. Look, he doesn't complain about my unwashed hair, my lanolin-stained bra worn at saggy half-mast, my chipping pedicure, my rank flannel bathrobe we'd rather be peaceful, Charlie and I, in these first disordered days.
I am setting a terrible example, adopting a dangerous pattern, no doubt. Today it's spit-up on his feet. Tomorrow it's a river of drool. Next, a runny nose that he's forever wiping on the sleeve of his grubby T-shirt. Beyond, who knows? Spinach in his teeth? Scotch tape repairs on his aviator glasses? Halitosis so staggering it makes people think he's been snacking at an all-you-can-eat gala buffet of corpses? I am afraid my kid is destined to be one of those unkempt Kool-Aid-stained children who make neater parents shake their heads and cluck in pity. At the moment, I simply don't care.
So in that way I'm a bad mother, probably. My baby is occasionally smelly. Together we scare the bejesus out of the UPS man when he's foolhardy enough to ring. And we're happy. Dirty, peaceful, and happy.
And they say there's no health care crisis in America
RSV respiratory syncitial virus is the most common respiratory virus in babies and young children. It's highly contagious; virtually all children get it before age 2. Most of the time, it causes an illness no more serious than the garden variety cold, but in premature babies, it can be life-threatening. 125,000 kids are hospitalized yearly with RSV, put on ventilators, returned to an ICU. And about 2500 infants die yearly from it.
There's no vaccine for RSV, but there is a drug that can keep the illness from becoming so severe if a baby contracts it. It's called Synagis, and it's given every 28 days during RSV season to babies who meet certain criteria premature birth, chronic lung disease, or both.
It also costs the motherfucking earth.
The dose is calculated by weight, so the cost increases monthly. The total cost of Synagis during a single RSV season can exceed $6000 per child.
Charlie's first dose was administered in the hospital in Connecticut. His second was delivered to our house to be given by a visiting nurse. The dispensing pharmacy called a few days before shipping to let us know the package was on its way, and to alert us that our insurance company was agreeing to pay only 40% of the cost for the injection.
There must be some mistake, I thought. It's a prescription drug, just like any other, covered with a reasonable co-pay. Someone's made a mistake.
Ah, but after several phone calls we have determined that there was no mistake at all. Charlie's Synagis a drug so effective that his doctor said, "I can't tell you how many lives it's saved" is covered on the same schedule as drugs that enhance erection.
Imagine my delight.
It turns out that there's a bit of controversy surrounding Synagis. While it's been proven to be remarkably potent against RSV, it's not thought to be cost-effective as a prophylaxis.
Follow me? It is cheaper to hospitalize a kid when he's sick than it is to prevent the illness to begin with. So the insurance company's taking its chances. Taking its chances with my kid's health.
I know this is what insurance companies do. I know they're a business. I know each company must minimize its own risk to maximize its profit. And I think it's fucking unconscionable.
Look, we're lucky. I know that. No matter what, Charlie will get his shots. We can afford to make up the difference in cost. And even if we couldn't, we'd have to find a way. We're parents who love a child, a flesh and blood being, after all, not a corporation that answers only to its shareholders.
And to think I was miffed when the company wouldn't pay for fertility treatment.
Tertia claims she's the world's worst mother. But the crown is not uncontested: I contend that I, too, am in the running. See, I'm so bad at keeping Charlie's nails from turning into razor-sharp talons that the poor kid looks like he was in a goddamn bar fight from scratching his own face. I am imagining a gang of pissed-off babies whacking their bottles against the edge of the bar to make a jagged edge for menacing their tiny enemies. I am fashioning a teeny bandana for him in his gang's colors, in fact.
I haven't the heart to tell him that tiny ducks scattered on a background of butter yellow won't exactly strike mortal terror into the hearts of his arch-rivals.
I clip his nails frequently, but always forget to use a junior-sized emery board to round off the sharp corners. Even so, at ten weeks old ten weeks old tomorrow! he has a nicer-looking manicure than I do. We will not talk about the haircut I was due to have two days after his birth and never rescheduled, or the lizardy dry patches of skin I can't be bothered to moisturize, or the appalling state of my toenails, pedicured five days postpartum and neglected ever since. (Talk about razor-sharp talons, to say nothing of the giant flakes of Essie's Scarlett O'Hara that trail behind me everytime I go barefoot.) I shower every day, but until I do, I shuffle around the house in a saggy plaid bathrobe and a lanolin-stained nursing bra pulled up over my breasts but not fastened, with my scaly, hairy legs as awkwardly naked as if I were poultry.
So not only does my infant son bear more picturesque facial scarring than a Barbary corsair, I have officially let myself go. Not only am I negligent, I'm ugly to boot. Top that, Tertia, you asshole.
It happened one night
Usually Paul tends Charlie around midnight. I take the 4 AM feeding because I need to be up to pump anyway. This generally allows each of us to get a short stretch of unbroken sleep, although it's imperfect; pumping every two to three hours plays hell with a girl's slumber. I'm philosophical about that, since I know that if Charlie were nursing I'd be up then, anyway.
I say "usually" and "generally" because we've been known to switch off when one of us needs to crash. Last night Paul was in dire straits, so I volunteered to be on duty all night.
I started feeding Charlie at 10:30, confident that he'd be finished and sleeping peacefully by the time I needed to pump at 11:30. Somewhere along the line, though, he started getting pissy. He'd suck on his bottle, but a few pulls in he'd start arching back, making a terribly angry face, and screaming. After a few rounds of this, I concluded that he wanted to suck but had a full stomach, so I put his pacifier in his mouth. He'd suck on that for a while, then repeat the same routine of angry contortions. I tried to pretend we were playing a game of charades at a sophisticated '30s house party, but he remained unamused by my guesses: swaddling? No. Rocking? No. Jiggling? No. Swing? No. Shushing loudly into his ear to drown out his angry yowls? No, and quit that, goddamn it.
Nothing was working, so as a last-ditch effort I shucked off what little clothing I was wearing and put him to breast, sans nipple shield, sans ceremony. I thought he might find some comfort noodling around with my nipple, smelling my scent. (Because the fenugreek has apparently infiltrated my every gland, I smell like the unwashed nether folds of Mrs. Butterworth, thanks for asking.)
My friends, he nursed like a motherfucking champ.
He latched. He sucked. He gulped and swallowed and practically chewed with his mouth open and drank the contents of his finger bowl. When I switched him to the other breast once he'd seemed to slow down, he took to it like, um, like a mammal to milk.
That boy can nurse.
However, since I'd managed to get in some pumping while he howled unhappily in the swing, I knew my breasts weren't full, so when he dropped off my breast a while later and still looked hungry, I investigated the bottle I'd been trying to give him when our peaceful mealtime went to hell. I thought maybe the milk had gone sour, so I can't believe I did this, much less that I am confessing it I put the nipple in my mouth and gave it an experimental suck.
Nothing happened. No milk, though the bottle was half full.
A few more sucks and...something...worked its way free. The holes in the nipple had been blocked, and all of Charlie's formidable sucking power could not dislodge that...something.
My boy was yelling, and my boy nursed at last because he was practically starving.
We finally slept, with Charlie dropping off exhausted and me eventually drifting off after making grand plans to sweep into the lactation consultant's office, Charlie nursing contentedly in his sling, modestly declaring that it was really nothing, after all. Just a little patience was all it took! (It goes without saying that in my vision, I was svelte, Charlie was cherubic, and the sling had an impeccable cut, making me look fashionable and maternal all at once.)
This morning I pumped a bit first to get my letdown going, and put him to breast again, eager to hold the ground we'd gained last night.
And he would have none of it.
He screamed. He wailed. He would not latch. He would not suck. He hated my breasts again, or still.
I'm fucked. As long as I lactate, I hope. As long as I hope, I'll try. And as long as I try, I suspect he will scream. I am fucked, my friends. Just fucked.
Next time I'm sticking with 160-Pound Tumor
The problem with TiVo is that it makes it impossible to claim, "I was just flipping past, and I happened to see..." No, I explicitly requested the Discovery Health program, Babies: Special Delivery, the episode slugged, "Crisis Mode: Pre-eclampsia at 31 weeks." (It is irrelevant but interesting to note that the same channel offers such edifying fare as 160-Pound Tumor and 14 Kids and Pregnant Again! exclamation point theirs, not mine.)
A pregnant woman with chronic hypertension is admitted to the hospital when her blood pressure spikes and she begins to spill protein into her urine. Her condition is worsening, so the delivery cannot be postponed, and in short order she gives birth to a baby boy weighing 3 pounds 14 ounces at 31 weeks. The baby shows immediate signs of respiratory distress syndrome. He does not respond well to the first course of surfactant.
Now, um, why did I think it was a good idea to watch this?
I watched it as I cradled Charlie against my chest, rubbing my cheek against his fuzzy head while he slept. I kept thinking, I could have lost you. I could have lost you. That's when I wasn't thinking, Good Christ, she's bloated.
I got e-mail a couple of weeks ago from a woman who also had HELLP syndrome. She wrote,
I've had three doctors tell me now that I shouldn't have any more children. It's hard to hear that I can't have more children if I wished to try again.
I'm wondering how you dealt with your HELLP. Did you have a hard time coming to terms with it and has it gotten better as time has gone on?
I'm astonished to say this, but I hardly think about it at all.
When I was discharged from the hospital, leaving Charlie behind for the night as we'd do for the next forty days, it was almost impossible to believe it had happened. I couldn't grasp the enormity of it at the time the fact that I'd gone in pregnant, come out not, not far from death but now quite well, a scant fast four days later.
I had a lot of time to think about it over the next six weeks, especially as Charlie's condition changed from day to day. And yet I rarely did. I thought about him, of course, all the time, and I occasionally resented the slow pace of my recuperation from surgery as I regained my stamina, but I didn't dwell on the danger I'd been in myself.
When Paul and I talked about those first few frightening days and we did, a lot, at my obsessive insistence I learned that he'd been scared for me. Strange; I never was. When my abdominal pain was at its most severe, I knew I was ill but was sure that it couldn't be serious. And when the obstetrician on call told me they needed to deliver the baby, I was certain it was on Charlie's behalf; it didn't occur to me at the time that it was necessary for my safety.
Behold the awesome power of denial.
I can't really account for any of this because, hey, I'm as self-absorbed as the next person. (Okay, I'm as self-absorbed as the next ten people.) All I can conclude is that my mind was full of Charlie. I had to think of someone else. I had to keep moving.
Even now that things have settled down and Charlie and I are perfectly well, I can't really accept it, can't honestly confront how sick I was. Did I have a hard time coming to terms with having had HELLP, with having been so desperately ill? You tell me.
Is it hard to hear that I shouldn't have more children? If I'd been asked this while Charlie was still in intensive care, I'd have said no in fact, I did. Now my answer's different. Now I have a newborn, and I feel a pleasure close to intoxication as I watch him change from day to day, on the cusp of new awareness with every single blink. I can say now with conviction that I want another baby, and I'm sorry I won't be having one.
It could be much worse. I'm here and well and so is Charlie, and that should truly be enough. Beyond that, I could have been the patient I mentioned before, the one on the show who delivered at 31 weeks; her son was on a ventilator for 20 days. I could have been another patient on the same show who extruded a second set of spontaneous twins through her artfully pixellated vagina. (Tertia, take note: two sets of twins at home. Two. You piker.) Or I could have been still another patient, one who had a severely abscessed tooth, requiring delivery before she went septic the camera zoomed in on her mouth, and as God is my witness I swear to you I'd rather be barren than have a luminescent throbbing oral pus-pocket like hers.
When Charlie was born, everyone in my family said, "Congratulations!"
No one said, "You must have been really sick," or "What a scary time for you," or "Is he going to be okay?" No one acknowledged the seriousness of the situation. Now, it is a thoroughly documented fact that in my family we don't talk about unpleasant things, so it wasn't a surprise, but it added to the unreality of the experience to be warmly congratulated on the dramatically early arrival of a baby who might not make it.
A few weeks after Charlie's birth, I told my friend T. with some indignation that a well loved relative on Paul's side "didn't even call to say congratulations." T. said, "You know, it's funny when Paul called to tell me about it, it didn't even occur to me to congratulate you. I thought to say, 'What can I do to help?' and 'Is Julie okay?' but 'Congratulations!' was the farthest thing from my mind."
No one said the right thing because there is no one right thing to say. If I was confused about my own feelings and I was, and still am and if even I didn't know what I needed to hear, I couldn't hold it against the people who care for me when they were unable to voice precisely the right combination of validation and optimism. You can't really expect people to blurt, "I'm worried about you. I'm worried about your baby. I'm shocked and sad at how it came about. I'm apprehensive about what the future might hold. But amid all this I feel a thrill of joy to think you have a baby at last. Hang in. I'm here for you."
Kind of a mouthful, really.
It's this same complexity of emotion that sometimes makes it hard for infertile women to accept congratulations when they're pregnant at last. The knowledge that that positive pregnancy test could eventually bring anything from joy to desolation is tough to reconcile. It's what makes us say, "Well, we're cautiously optimistic" when we're twenty weeks along, or tack on, "...if everything goes okay, fingers crossed," when strangers wish us well.
Charlie's twelve weeks old. I've reached my goal of pumping until we'd reached that milestone. Coincidentally, today we are using the very last of the frozen milk I'd stockpiled while he was in the hospital. I'm tremendously ambivalent about both the prospect of stopping and the possibility of continuing. I've done right by him so far, and I'm proud of that. Now as I enter uncharted territory the place where I have no concrete goal and assume a "one day at a time" approach I don't know what I need to hear. I don't know if I need encouragement to continue or reassurance that I can stop. I'm not sure what would make me feel good. I don't think there's any one right thing to say, when my feelings are so complex and often contradictory.
But I think "congratulations" would be a good start.