when you don’t know the rules

A couple of days ago we went to visit our son. Elana has been out of the hospital for a few days and seems to be getting markedly better each day. But Henry, who’s somewhat wee and premature, is sticking around there for a while, so we go to visit him every day for a feeding or sometimes two, and for quality snuggling and play time. Well, the playing is mostly on our part — it usually consists of waving his little hands and feet back and forth and kissing his warm little forehead. He accepts all this without comment. Usually with his eyes closed. I suspect him of sleeping, in fact.


We went to visit our son. We arrived early for his midafternoon feeding; the nurse was out and he wasn’t really awake yet, so we sat down for a few minutes near his crib (well, you know — plastic box) to wait. I spied the big blue binder containing his medical records on the counter, and we decided to have a look.

Why we did this, I can’t say, exactly. Maybe because we’re both big science nerds, but neither of us is an actual scientist, so for us numbers on graph paper still have tremendous novelty and appeal. Maybe because we’re both so brain-befogged about what exactly happened those first few days (Elana having been heavily drugged, and I having been a trembling mass of worry-jelly) that it’s comforting to think someone was taking notes. Or maybe it’s because we’re new, clueless parents, and it’s a large book about our kid.

Anyway, we started reading about our kid, but we quickly realized that almost half the book is actually about us. When your kid is in the NICU, apparently, each day’s report about him is accompanied by a report about the parents — did they visit, did they handle him appropriately, do they know the head-end from the diaper end, and so on. Fairly harmless, I suppose, and I don’t really care, though it is a little odd to realize that there’s an official record of your behavior somewhere that you weren’t aware of.

And maybe you’re not supposed to become aware of it, because after about ten minutes the nurse appeared at my side and, before she even introduced herself, scooped up the book out of my hands and explained very firmly that they don’t like parents reading the medical records, because in the past parents have “misunderstood things they read” and then been upset with the nurses, and the nurses didn’t know why. “If you want to look at the records, we can have a doctor sit down with you and go over it.”

I fixed her with my what-the-hell-are-you-talking-about stare and didn’t say anything — a tactic that sometimes works with gatekeepers — so she repeated the whole speech again. My libertarian INFORMATION WANTS TO BE FREE!!! tendencies were starting to kick in, and I briefly wondered if I should argue the point with her. But my wife, who’s a good deal smarter than I am, had already figured out what was important here, and she gave me the eye. So when the nurse asked, “Okay?” I let it go, with a grumbly, “No, but that’s all right.”

What Elana had already figured out was that in a situation where people have your baby and are taking notes about your behavior, there is no good outcome to fighting them on principle.


My wife is basically a saint. I say this partly because she already wrote embarrassingly nice things about me and I’m pretty sure I should have been the first one to do it, seeing as how she was in the hospital and all, so I’m kind of already behind on my wife-praising duties. (Gentlemen, a hint: when your wife almost dies bringing your child into the world, you should strive to say something about her that’s at least as nice as this, and really maybe something more like this. Yeah.)

But I also say it because all while she was in the hospital she was unbelievably calm and cheerful and kind to the nurses and blissfully willing to let them do all kinds of invasive and unpleasant things — even the one woman she dubbed The Midnight Phlebotomist. She would sit in bed and happily talk about what she had learned from nearly dying, which was that a lot of the stuff we think is important isn’t, really, and that she thought she might lighten up about things a bit. And then they would stick tubes down her throat and ask her questions.

Elana in the hospital.


Nonetheless, even my wife sometimes runs afoul of the unwritten Hospital Code. That same day a nurse asked us if we wanted to sign the release for Henry to have the hepatitis B vaccine.

“Oh,” said Elana. “I thought he got that at 2 months.”

“Well, the policy in New York is that he gets one shot now and then a series starting at two months.”

“A series of three?”

“Yes.”

“For a total of four.”

“Yes.”

“I don’t understand. I tested negative for hepatitis B. Is he likely to get the virus from some other source in the next two months?”

The pediatrician, who was standing nearby examining Henry, jumped in. “It’s just an extra protection starting at birth. Just in case.”

“In case he’s an IV drug user on the side,” I joked.

“No.”

“Okay,” continued Elana, trying to figure it all out, “I just thought the recommended course was three doses.”

The pediatrician and the nurse shared a look. Which was followed by a weird, elaborate bit of performance in which the nurse assured Elana that OF COURSE you don’t HAVE TO sign it if you’re not comfortable, and WHY DON’T YOU TAKE A PAMPHLET, while Elana tried desperately to convey that WE ARE NOT ANTI-VAXERS!!! WE LIKE SCIENCE AND HERD IMMUNITY AND NPR!!! REALLY!!! WE’RE DESPERATE FOR HIM TO HAVE HIS DIP-TETS!!!

That’s probably going in our Permanent Record, though. Parents hesitant about hepatitis B vaccine. Possibly hate child and America and everything good?


Then yesterday it happened again. The nurse practitioner came in and told us, seemingly out of the blue, “Today we’re starting Henry on iron.”

“Oh, why?” said my wife. “Is he anemic?”

Now, there is a perfectly good reason they wanted to give our son iron. I will withhold that information at this juncture to create Dramatic Tension. But I would like to point out that an explanation, any explanation, would have been okay with us. She could even have lied and said, “Yes, he is anemic. Nothing to worry about, though — we’ll have him chew tenpenny nails for a couple of days and he’ll be right as rain.”

But instead she smiled in a sort of puzzled, puzzling way and said, “It’s just something we like to do.”

“Because he’s preemie?” I asked.

“Yes, because he’s preemie.”

“So… do you mix it in his milk?” asked Elana.

Another weird smile.

“Or do you… give it to him with a dropper or something?” I said.

“There’s a syringe,” she said vaguely.

“But do you give it to him… orally?” Elana asked.

“Yes… orally.” It was like talking to a zombi.

That led, somehow, to a discussion of the Human Milk Fortifier that they’ve been mixing into his mother’s breast milk for their bottle feedings. Which is fine by us, but somehow by the end of the conversation the NP was telling us that Elana, who already breastfeeds Henry during the day and is planning on doing so exclusively once he comes home, would need to pump three bottles a day so that we could add a special fortifying formula to it. “It gives him 22, 23 additional calories. Plus… some other stuff.”

“Really?” said Elana. “How long will I need to do that?”

“We would probably recommend fortification for the first nine months.”

My wife sagged a little. “Nine months?”

“Yes.”

“Are you sure? Because the pumping is difficult and painful, and also we would have to pay for the pump.”

“Oh yes. Nine months. But on the bright side, Dad could do some feedings, too!”

I thought I’d try a different approach. “The formula adds 23 calories?”

“Mmm…. 22… or….”

“How many calories a day will he get from breastfeeding?”

Amazingly, she looked at me like I was a complete moron. “Well, we can’t really measure that.”

“Well, okay…. But how many calories would you like him to get? What’s the average you’re expecting, if he feeds 8 times a day?”

“Well, we’d like to see about… 120 calories per kilo.”

Elana and I did some back-of-the-envelope calculations. “He’s a little over two kilos. So that’s about 250 calories per day. So you want to increase his calorie intake by about 10%…?” I hazarded. “Is that the goal?”

She looked at us funny again.


Of course, sometimes it’s not you who bumbles into a faux pas in the hospital.

We were hanging out in the nursery with our kid, and my wife was pumping breast milk. She jokes sometimes that she is The Human Dairy, and I can only imagine how weird it is to sit around with your boobs hanging out of your shirt and weird air-horn looking things hanging off your nipples. In fact, it’s got to be far worse, in that sense, than breastfeeding, because when you’re breastfeeding you have a baby covering your breast (and usually it’s only one breast), and also because people tend to think nice things about breastfeeding mothers.

That you might be feeding God, for example.

Whereas having the pumps on seems to leave you much more exposed and also sort of makes you look like you could be in some sort of Children of Men/Handmaid’s Tale dystopia. Or a New Zealand political campaign.

Anyway, it’s sort of a private thing.

So we were sitting next to the boy’s crib, and Elana was pumping away on a machine one of the nurses had thoughtfully brought in for her, when the social worker yanked open the curtain and enthusiastically charged in: “Did you get this pamphlet on Baby Care? It’s really great! It tells you everything you need to — ”

She stopped and stared straight at my wife’s breasts, at the airhorns, at the pump going wonk-wonk-wonk-wonk in the corner.

“I’m sorry,” she said. “This is probably a bad time…?”

Elana allowed as how it was as little awkward. The social worker put the pamphlet over her face and started backing away.


Hospitals are uncomfortable places. They combine several different hierarchies (between doctors and patients, doctors and nurses, and different kinds of doctors) with the appalling forced intimacy of discussing private and/or terrifying things with strangers. No wonder doctors always look like they’re ready to be somewhere else.

So it can be hard to have normal conversations with people. But every now and then you find someone who’s actually able to talk to you like a peer. Sometimes, they assume your level of understanding to be somewhat greater than it actually is, as with the hilarious-yet-humorless ENT who examined my wife’s vocal cords and would say amazing things while feeding a tube down Elana’s nose. Things like, “This will feel about the same as last time until I reach the pharynx” and “What I’m looking for is any edema in the sub-glottic area.”

But sometimes you really hit that sweet spot with a medical professional and they’re able to explain things to you in clear English without dumbing down the science too much and without giving the impression that You Are Asking About The Forbidden Knowledge. These people should be given medals and heaps of cash.

Today while we were feeding Henry a different nurse practitioner came in and talked to us for about twenty minutes. By the end we about wanted to kiss her feet. Between our conversation with her and a phone call to my sister, who is a pediatrician, we came away with a pretty comprehensive understanding of all the stuff that had caused us confusion in the previous two days.

For the benefit of any new parents of preemies who may someday stumble onto this blog, here is the concise skinny on what preterm infants need, from Catherine The Excellent NP and My Sister, M.D.:

Hepatitis B: The hepatitis B vaccine is, indeed, administered in 3 doses. They like to do the first one at birth now because there have been a lot of problems with moms infecting their babies with the virus. If your child gets the first installment in the hospital, then they give him the other two doses in his first two “combination” shots at two months and four months, and then a different combination vaccine without the hep B at six months. If your pediatrician doesn’t happen to have a combo vaccine without hep B, that’s okay — a fourth dose at six months won’t hurt him.

If he doesn’t get the first dose at the hospital, then he gets it (bundled with a bunch of other vaccines) at two months, then another round at four months and another at six.

So, to sum up, three is standard, four is fine, and they do it at birth now just to be on the safe side.

Iron and the Joe Weider Baby Weight Gain Formula: In the third trimester of development, the baby socks away stores of iron and fat and other nutrients. Sort of builds it up like a savings account. If he’s a preemie, of course, he’s had less time to store up all those extra resources. So they want to stuff him full of them shortly after birth so he’ll be up to par.

Iron is particularly important, because there’s simply not enough of it in human milk to meet the baby’s needs as he builds blood volume. So if he doesn’t store up a six-month reserve in the third trimester (and our little guy was at least a month early), some fairly bad things can happen, including neurological impairment that can’t necessarily be reversed later. (Check out this surprisingly readable paper on the subject from the Canadian Medical Association Journal.)

That does NOT mean you have to keep pumping breast milk for nine months, mixing fortifier into it. If your baby is a good breastfeeder right away, he may never need the extra calories. And if your pediatrician recommends, for example, iron, you can buy an iron supplement separately and feed it to him with a dropper. (Though my sister says the babies hate it — it’s apparently pretty nasty-tasting.) OR, if he does need the additional calories because he’s not gaining weight fast enough, you can feed him the special preemie formula straight once a day in a bottle. To repeat, you do not have to pump extra milk for 9 months. Just in case anyone tries to tell you you do.


Tomorrow we may be bringing Henry home. He had a moment the other day where he forgot to breathe for a few seconds while he was sleeping, so they’re debating whether to send him home with a monitor. That’s a subject for another post, but for now let me just say that I think they should send him home with an actual human monitor, preferably somebody with a badge and a hat and a whistle, someone who will watch us and let us know when we’re screwing things up. You know: putting a hat on his elbow, or investing his college money in newspaper stock.

Except that’s not really true. The truth is that I’m tired of having experts tell me how to manage my baby. Even the experts who saved the lives of two out of the three members of our nascent family are beginning to grate on me.

I don’t have any sense that because I contributed some DNA to this kid that I have magical insight or wisdom into how to care for him. But at a certain point, he’s in our care. There’s nothing they can do about it if I want to feed him entirely on Froot Loops or keep him up all night playing Monopoly, a game which he will only dimly understand because he’s five and he’s never used money, and which anyway is epically tedious with just two players, but we’re going to finish it, dammit!

Ultimately this little guy is dependent on us for everything, practically forever. The neonatologists and the NICU nurses are using all their expertise to give him every possible advantage heading out into life, but eventually, they’re handing him into the care of a couple of morans. It’s like hearing the massive soundscapes of Pink Floyd being piped in as background music in the Wal-Mart: it would have been better for such astonishing artistry never to have existed than to put it to such a trivial, compromised use. I want to tell them, You’re delivering us the Bugatti of babies. But we’re just going to let homeless people live in it for six months and then drunkenly back it into a lake one night!

Well, anyway, that’s how it seems. Perhaps we’ll surprise ourselves. Or get really, really lucky.

Off to bed — tomorrow is (or is not, depending on some test results) the big day!

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4 responses to “when you don’t know the rules

  1. Grumpy old man,
    The experts are there as resources. Aren’t we grateful for your sister?
    It is just a steep learning curve for all involved.
    So patient with yourselves and remember there are very few really damaging things you can do.

  2. And you guys are doing fine so far.

  3. Random – Normal breast milk/formula is 20 kcal/oz. It is usually fortified to 22 or 24 kcal/oz.

  4. Firstly, the folder they are keeping on you two is WEIRD and creepy.
    Secondly, the morans gag gets me every time.
    Go Henry!

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