I Know I’m Annoying

Quick update: Das Big Boy seems to have officially turned the corner. He only needed oxygen for about 30 minutes right after falling asleep last night. We haven’t spoken to the team yet, but I imagine he’ll probably go home today or tomorrow at the latest. Little Liebchen is another story. She doesn’t seem to be getting too much worse, but it’s hard to tell if she’s hit bottom yet. We’ll see how she does today. She’s still eating well, but she’s working hard to breathe at times (and still getting some, but less, o2). Her little coughs sound like gunshots in an early 1990s computer game (I’m thinking Gold Rush) and totally break my heart.

But I wanted to write a slightly different post. About my (failed, clearly) efforts to prevent an event like this one. We all know Das Big Boy is much less vulnerable than he used to be. But obviously, he’s still vulnerable. And his sister is young enough that she is, too. That’s why I’m annoying sometimes. I recognize that it’s annoying, and I feel somewhere between mildly awkward and horribly mortified being this way.

But THIS:

is why I:

1) Ask you not to visit if you’re sick, or have had symptoms in the previous 48 hours.

2) Ask you if your kids are sick or have recently been sick before setting up a play date.

3) Try to keep Das Big Boy from playing near kids with runny noses at the park.

4) Ask you to Purell or wash your hands before you come into my house.

5) Ask you to remove your shoes before you come in our house. (This one has the bonus feature of keeping my floors clean, and, according to A Green Slate, is a great way to reduce levels of lead and other toxins in the home).

6) Obsessively wash my hands, such that they look like they belong to a one-hundred year old woman (with all due respect to my Mimi, who turns a hundred on March first and has lovely hands!)

7) Wipe down shopping carts.

8) Inadvertently scowl at and deliberately run from people who cough without covering their mouths (and use your elbows, people!).

It doesn’t mean I don’t want to have a normal life. It certainly doesn’t mean I want to keep my kids in contact isolation; thankfully, Das Big Boy’s team has decided that even with this recent setback, we don’t need to go into full lockdown mode. It just means we have to be careful. I don’t enjoy it, and I hate that it makes us difficult, or makes people afraid to hang out with us. The best thing people can do is cheerfully acquiesce to my home hygiene demands, and just tell me honestly what’s going on with themselves and their kids so we can decide if it’s safe.

My blog friend and fellow preemie-mom, Tatum, at AintNoRollerCoaster, made this for me. So when people ask what RSV stands for, this is what I’ll say. You should check out Tatum’s blog, about her family and particularly her 23-week son, Owen, who is just amazing. Tatum is a sharp, funny, and loving writer who writes more honestly about the extended preemie experience than anyone I’ve ever read.

Most things are safe. Das Big Boy has weathered several colds like a champ. But RSV presents as a typical, if sometimes very bad, cold in an older child, but for newborns and kids with complex histories, it’s obviously very dangerous. Most kids DBB’s age have had RSV and thought it was just a normal cold. But DBB had synagis, which protected him in the winters before this one, making him more vulnerable this year.

I know how Das Big Boy got RSV and shared it with his sister. We were at his early intervention playgroup. Das Big Boy receives early intervention services in part because of his medical diagnosis of pulmonary hypertension (a debatable, possibly outdated diagnosis, but still). As of March, it seems likely that he might only qualify based on this diagnosis. This means I expect that early intervention will provide services that accommodate this needs, much as they do for children with developmental delays. I’m not asking for special treatment. But I do firmly believe they need to enforce their own sick policy, and the week before last, they didn’t. A little girl showed up with a cold on Tuesday, and a bad cold and cough on Thursday. I should have taken Das Big Boy home the moment I heard that cough in the hallway. But he had such a hard time transitioning to this new group while I was on bed rest, and we’d made real progress since I’d been able to accompany him after Little Liebchen’s birth. I didn’t want to confuse him by arriving and then leaving. So I told the teachers that I heard the little girl’s cough, and that DBB would have to stay far away from her. When one of the interns (who heard me say that, btw) motioned for DBB to sit between her and cough-girl, I intervened. I Purelled his hands constantly. I kept him as far from her as possible, and her therapist did the same. Really, though, when I said, “I hear her cough. DBB needs to stay far away from her. He can’t get a cough. It would be really bad,” I expected them to send her home, as their sick policy says they will. But they didn’t. At that point, I should have yanked him out, but I didn’t. It’s that constant battle between normalcy and protection. And this time, I lost. Big.

I’m not trying to blame EI, or the teachers. I’m not trying to blame myself. But I do expect them to enforce their sick policy in the future, and if they feel they can’t, then I’ll have to pull him out until cold and flu season ends. And the thing is he’ll eventually attend this group without me so it will be essential that I can trust his teachers to make appropriate decisions, as I won’t be there to ensure that the other kids are healthy.

So maybe, once DBB is healthy, we’ll just do my town moms playgroup for a while. The moms there are incredibly supportive (Thanks for ALL the love, guys. It means so much), and we keep our kids home when they’re sick (I won’t lambast the parents of cough-girl here, but they should have kept their daughter home so that neither the teachers nor I were put in the situation of deciding how to handle this sick kid).

Sorry for the not terribly interesting rantiness. But I needed to get that out. Everyone else is somehow still asleep here in hospital land, so a little blog-venting seemed like just the thing.

I am so grateful for all of the love and support you all have provided as usual. I feel like I’m turning into the blog (or, for most of you, real life) version of the sadsack friend who never has any good news. Soon enough, I hope to balance my woe-is-me moments with the blend of heart and snark you expect from me. And to my local buddies, I think mugs-o-wine are in order when this has all passed. Who’s in?