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04/12/2005

So you've decided to have a kid in the NICU!

This is for Pazel, who asked. It's my best advice for how to make it through your child's NICU stay. If you have any survival tips to share, please post them in the comments.

He's not going to remember any of this. You will — oh, you will, though other NICU mothers have assured me that the memory will recede in time — but he won't.

One terrible night, Charlie needed a spinal tap. We weren't permitted to stay in the NICU for the procedure, although I'd hoped to; when the only thing you can do for your baby is to be there, well, you want to be there. When we returned to Charlie's isolette immediately after the procedure, I was surprised to see how easily he slept, pink from his transfusions, looking pretty good for a baby who was, as the doctor later said, "knocking on the pearly gates."

He slept. His vital signs were good. The next day he was measurably better. He wasn't going to remember any of this. That knowledge was one of the only comforts during Charlie's long NICU stay.

Know how I just said that when the only thing you can do for your baby is to be there, you want to be there? Don't always be there. People will tell you that your baby knows you're with him, and I believe that's true to a degree. It's comforting. But there's a tyranny in that statement, too. If he knows, shouldn't I be there all the time?

God, no.

Your baby needs you there, but he also needs you rested, clear-headed, and relaxed. You're going to be none of these. After all, your kid's in the NICU. But do what you can to approach that ideal. You'll need to be ready to make decisions about treatment, to digest vast amounts of information, and to spend time bonding with your baby under very upsetting circumstances. So go home. Have a decent meal. Get some sleep if you can.

Yeah, yeah, I know. Try.

I can't imagine how grueling and upsetting it would be to have a child in the NICU and another at home. I'm not speaking from experience but from intuition when I say that the kid at home might need you more just now: after all, she'll remember this. The NICU baby won't.

So go to the NICU, of course. Be involved in your baby's care. But please don't forget to take care of yourself and the other people who love you. It'll be okay, because...

Your baby is in the most competent possible hands. Many NICU parents report being extremely upset to have to leave their baby behind when they went home after birth. This never bothered me: Charlie so obviously needed help that I was deeply relieved to have access to qualified people to care for him. And I couldn't have asked for a better team to do it. Every single one of the people who cared for Charlie was vigilant, skilled, and compassionate. (Okay, there's a caveat there, but more on that in a second.)

As far as your baby's physical needs are concerned, he will never in his life be better cared for than he is now. He'll be looked after round the clock by people who'll get to know him. I found great comfort in that.

Remember that caveat? Let's talk about doctors. From what you've written, it sounds like you've run into the same unsettling character we did, the doctor who does this every day and has therefore grown tone-deaf.

One doctor in particular said a lot of boneheaded things. One day postpartum, is "We don't have a crystal ball" supposed to help? What parent wants to hear how close her kid was to dying only hours after the crisis is over? Who wants to hear her future reproductive hopes scotched by a doctor who's not even an obstetrician, much less her obstetrician?

And yet. And yet. Despite what was either his callousness or his utter social ineptitude, this doctor gave Charlie top flight medical care. Don't assume a lack of concern for your baby when a doctor shows a lack of concern for you. Instead...

Get your feelgoods from the nurses. In my experience, nurses more than doctors seemed to feel that they weren't just taking care of a baby, they were taking care of a family. Time and again I watched nurses encourage the fathers to get involved, for example, to do kangaroo care or to feed the baby his bottle while the mother pumped. More than once the nurses reminded us to do things to take care of ourselves, to find a good local restaurant, to see a new movie just out, to go down to New York for the day. (And I'd plug the breast pump in...um, where, exactly?)

Get to know them as much as you can. They're going to be spending an awful lot of time caring for your baby, and you'll be spending an awful lot of time with them, even for a short NICU stay. You'll feel better if you know who's who. For us, it helped enormously to know that the people caring for Charlie were people and not just employees.

The NICU nurses encouraged me to pump, furnishing much better information than the hospital lactation consultants and making sure we had privacy around Charlie's isolette so I could watch Paul hold the baby while I did so. They spent a lot of time explaining what they were doing, reassuring us that the majority of what they did was utterly routine, and standing quietly with me at Charlie's bedside while I cried with a comforting arm around my shoulder.

Ignore that baby behind the curtain. You'll see a lot of other babies in the NICU, and a lot of other parents. Some babies will do much better than yours and will go home sooner. Some won't. And some really won't. Some parents will seem to be taking this all in stride. Others will look pale and crazed. (That would be me.) Avoid the temptation to compare babies, to fret about how short a stay they have or, more sadly, to imagine your baby in their place. No other baby on Earth has the same set of circumstances as yours, so it's pointless to compare. Irresistible, but pointless.

And fight the urge to wonder how that perfectly put-together mother looks so gorgeous three days postpartum, how she keeps her mascara from running when she cries, how she doesn't look like she's cried at all. She's not you. And she's not superior. Don't let her make you feel inadequate. (Key her car in the parking lot later if you must.)*

Even though you're your baby's parent, he's a patient in his own right. You'll be informed almost as often as you're consulted, if not more so (though non-urgent interventions will be discussed with you beforehand and major procedures will always require your consent). If your baby's doctor decides he needs a course of treatment immediately, it will probably be started before you're aware of it. This is initially upsetting, but ultimately very good. When Charlie contracted an infection of his central IV line, an infection that turned into sepsis, a course of antibiotics was begun immediately, in the middle of the night, before Paul and I were even aware he was sick. Those extra hours might have made a life-and-death difference. I am so grateful we didn't find out for sure.

It will get better.

It will get worse.

Lather, rinse, repeat as needed.

No matter how many times experienced NICU parents warned me that Charlie's course would likely be a long series of vertiginous highs and vomit-inducing lows, I didn't truly understand that until, oh, about the third peak followed inevitably by the third valley, a valley so deep it rivaled the Marianas Trench. You won't really know it until you live it, but once you do, you can say, "Oh. So that's what they meant." And have a good stiff drink or two.

Now some practical pointers:

Don't feel bad about calling the NICU. And don't feel bad about calling the NICU a lot. The nurses are used to hearing from parents, and are happy to talk with you about your baby. I used to call in the morning before we went in, to ask them how his night was or to request that they wait to bathe him until we were there; in the evening after his daily weigh-in; and in the middle of the night after I'd pumped and needed a reward.

Some things I used to ask that helped me feel more involved:

  • What was Charlie's weight tonight?
  • How much did he eat?
  • What position is he in right now?
  • Did he cry last time his diaper was changed?
  • Who was taking care of him tonight? Who'd be on next shift?
  • What was he wearing?
You know, normal parent questions that made me feel closer to Charlie. The nurses don't mind. Once you know them, and once your baby's condition is stable, you'll feel like you're having a casual conversation with a friend about a baby you all care for deeply.

Consider leaving a disposable camera by your baby's bedside. Ask the nurses to take pictures of him while you're not there. Sometimes they'll capture him doing something really cute, like sucking his thumb. Or pulling out his IV lines.

Instruct your family and friends that no news isn't bad news. You're going to be too busy to keep everyone informed, so it would be kind to let people know that if they don't hear from you, they shouldn't assume the worst. You might want to send out a single e-mail update to a list of loved ones instead of talking to people individually; you might want to change your outgoing voice mail message to reflect current conditions; you might want to designate one person to be the communicator so that you only have to keep that one person apprised. Your choice. You get to decide what information to share and how. If anyone later dares to complain, you are in the perfect position to draw yourself up, assume a look of righteous rage, and bellow, "My kid was in the hospital!" Then key her car.**

Take care of your hands. You'll be washing them a thousand times a day with harsh soap and cold water. (If you can wait for the water to warm before you rush over to see your baby, you're a better woman than I.) You'll be drying them with hospital-grade paper towels. And if you have any tendency to fidget during times of stress, your nails and cuticles will be a raw, bleeding mess. I kept a tube of lotion in my purse; no sooner had the doors to the NICU slammed shut behind me after a visit than I was pulling out my Kiehl's Unusually Rich - But Not Greasy At All - Hand Cream. My hands still felt like I'd been getting a daily manicure with steel wool, lava, and lighter fluid, but it probably would have been worse without religious greasing.

Take clothes for your baby to wear. If your baby is spending a lot of time under bilirubin lights, he won't be able to wear clothing all the time, but once he's able to it's much nicer to see him in an outfit you chose yourself. There was only so much pastel-blue-"I love my Daddy!"-footballs-and-airplanes garb I could stand.

Take a water bottle. In our NICU, no food or drink was allowed in the patient area, of course, but an exception was made for nursing or pumping mothers, who were allowed to drink water. (Any time you're not pumping, you should probably be drinking.) I took a refillable bottle that held much more than the hospital's paper cups. Plus I could smuggle in vodka and no one was ever the wiser.

Take your own Kleenex. You're going to cry, and you're going to cry a lot. Unless you're happy with industrial-strength hospital tissues***, you'll want something softer than 200-grit sandpaper to apply to your rabbity-looking eyes and red-rimmed crusty nostrils.

Yeah. I'm sorry, and I hate it, but you're gonna cry.

_____
* For the love of God, don't key her car.
** Hers, either.
*** And don't rub it with hospital Kleenex. Jesus, what is wrong with you?

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