ReminderPosted: December 21, 2014
I’ve been doing a lot of hunky-dory holiday posting recently, but one of the reasons I made this promise to blog from Oct 21 until Feb 11 promise was to remember a time in my life that wasn’t so hunky-dory, so that I could honor that time and appreciate the present. So warning, this post has some heavier stuff.
The holidays in the NICU are weird. I can remember well-meaning people asking why we weren’t going “home” for the holidays, not realizing that our home was of course next to Das Big Boy’s isolette, not with our other families. Everyone goes through this when they have children, of course. You’re your own family now in a way that you weren’t before. But when you’re somewhat cut off from your family because you’re spending every waking hour in a hospital, it’s somewhat more acute. The hospital does a wonderful job of infusing everything with cheer, but beneath it all there is of course a heartbreak that you try like hell to ignore.
Shortly before Das Big Boy’s first Christmas, we had what I think remains the worst night of my life. I couldn’t remember the exact anniversary, but I’ve been thinking of it for the past few days, and, as it turns out, I was right on target. On December 18, 2010, Das Big Boy had his biggest health scare of the NICU (except for almost dying the night after he was born).
I’m not sure I’m up to writing about it, but here’s part of the email I sent to the head of neonatology afterwards:
Dear [Director,]Thank you again for the wonderful care you took of [Das Big Boy.] Unfortunately, he had a very rough Saturday night and has yet to recover. When [Herr Husband] and I left at 5:30 to buy him his weekly book, he was doing great. Sating [showing blood oxygen saturations] in the mid-nineties on 28% O2, normal and even respiratory rate (for him). When we returned at 7:30, he was bouncing between the seventies and eighties on 32% 02, and his respiratory rate was elevated. When we asked his nurse what she thought was going on, she shared that…he had been sating in the 60s, and she had found that his CPAP [Continuous Positive Airway Pressure–his breathing support apparatus] was disconnected in back, and she didn’t know how long he’d been that way. His nurse raised his 02 a bit more and suctioned him. He then had a major desat, which she had a very hard time bringing him back from. He bounced between the forties and sixties for about ten minutes, and she had to raise his 02 to 60 and use blow-by to finally stabilize him, after ten or fifteen minutes. His 02 was left at 40%, and remains there. He remains very tachypnic [means he was breathing fast]–far more than usual–and is working hard to breathe.When [the fellow] took us through the records on the monitor, it appears he was sating in the 60s (during the disconnection episode) for at least ten minutes.
What I don’t write about here is that during the episode, I was hysterical in a way I never had been before or since, and that I really thought he might die or never recover. That I thought it was somehow our fault for being away from him, which we so rarely were. How furious I was that some staff had implied that our constant presence was too much and possibly sometimes interfered with his care, but that we could have prevented part of this had we been there.
The truth is, I don’t think about this night very often at all. It’s still too much and there’s no use in going there. But in a way, it’s good for me to remember how lucky I am that I don’t have to worry on this level anymore (knock on some serious wood).
So let’s move away from that for a moment.
We had a lovely Hanukkah gathering tonight with my parents, and with the wonderful Mo who volunteered to care for our babes this morning so we could do some last minute holiday stuff–sidebar: it continues to delight me how much she loves our kids and how much they love her, even though they don’t see each other very often. It’s as if our children just know how important and wonderful she is.
After dinner, I was talking with my mom about how I’d been stressed and worried lately by balancing the two kids, school, activities, therapies, etc, and how I worry I’m not doing the right things to help Das Big Boy work on the stuff he still needs to work on. And she reminded me of something she always says about parenting that I’ve espoused, too. “If you’re not having fun, you’re doing it wrong.” Now of course, there are things and events in parenting that aren’t going to be fun. (See above). Those are the crisis moments and no one expects you to have enjoy them. But the truth is, much of the stuff that gets us down as parents is just life. The struggles are different for each of us, but they’re going to be what they’re going to be. While we can’t control them, we do have some control over how they affect us. A lot of the worrying we do about our kids isn’t about our kids. It’s about us. And in fact, it’s us interfering with their being whomever it is they are going to be. Worrying isn’t productive. It doesn’t teach them anything. It’s just a way of taking what should be about them–how can I help my child become his or her best self? And making it about us, bringing their difficulties into our brain, rather than being present with them out in the real world.
So that’s what I’m going to try to be better at: being present. Not remembering the scary times. Not idealizing the seemingly easier semi-recent past. Not fretting and worrying about the future. Not trying to plan the perfect project that will engage Das Big Boy so he wants to work on his fine motor skills. But playing and laughing and decorating cookies and keeping my patience as I remind Das Big Boy to sit down at the dinner table for the thousandth time or as I insist that Little Liebchen wear pants because it’s cold outside.
And maybe, once in a while, we’ll jump up from the dinner table and dance around without our pants on. Because that’s the kind of family we really are.