To say that it’s been a rough week in NyanaLand is an understatement. Things have not been going so well, lately. It’s OK, there’s no reason to panic or worry or sound the alarms, things just haven’t been going well for Princess Screamyface. Life is like that sometimes, even for preemies with lung issues. Sometimes life is just a bummer. I read on a friend’s facebook page this week that Mercury is in retrograde right now. I’m no astrologist, but I’m told that all sorts of things can expect to be messed up when that happens. So, it sounds like a perfectly good scapegoat to me. Damn you, Mercury In Retrograde!
For almost a week after Nyana’s g-tube surgery, everything was rosy. There were still lots of smiles and good playtimes and things were going well. Then sometime on Thursday, things took a bit of a turn for the not-so-fun. She became irritable almost overnight, crying a lot and being uncharacteristically inconsolable. She’s found a new pitch to her cries that borders on painful screams, and can keep them up until she tires herself out completely and falls asleep. Then, even in her sleep, she can have sporadic fits of discomfort, crying as she dozes in and out of consciousness. When we left her on Saturday afternoon she was really uncomfortable but managing, when we came back to her on Sunday afternoon she was done managing and was just full out upset. Since then it’s been dicey; we never know how she’ll be at any given time but mostly she’s been pretty uncomfortable. And I want them to prove to me a second time now that she has a lung disease because she can lay on those pipes, let me tell you. I took a blast directly into my ear on Sunday that is still ringing now.
As any parent out there knows, finding the source of an infant’s discomfort can be a big challenge. As any preemie parent out there knows, it can be downright impossible. Not only do you run through the normal checklist of things that every other parent runs through of things that could be upsetting your little one, but you have a medical checklist that you need to consider, and then a medical team hovering just outside (and often directly inside) your room, stepping in with their own checklists and tips and tricks for things you might not be doing, or not doing well enough. Everybody means well, but it can be fairly emasculating for a parent, at times.
And when everybody’s checklists fail and you still have a screaming baby in great discomfort, what then? Where does one go when even the doctor says “we might just have to wait it out”? For us, it has led us to just doing what we can to keep her comfortable. If she wants to cuddle, we cuddle. If she wants to sleep, we let her sleep. Even now as I write I am cribside once again, just letting her sleep – I’ve been here for almost an hour and a half, getting up a few times just to put her soother back in. She’s been passed out, but fitful, after a long day of crying with Mum. Mum is taking a break from the crying while at home finishing the laundry that she had to put on hold last night when our inane laundry card suddenly E-06’d on her, halfway through a load. I don’t know what an E-06 is either, except that it showed up on the screen instead of “credit – $30” and we couldn’t do any more laundry. Wet load, overnight. Damn you, Mercury In Retrograde.
The g-tube specialist was finally in today (she only works three days a week and this is the first time we’ve been able to have her take a look at it since Ny started fussing last week) and said it’s hard to determine if there’s a problem with the tube site. It’s possible that Nyana has an mild infection, but it could also be simply granulated tissue, which is normal in healing wounds. Either way, they decided to start her on some oral antibiotics, just to be safe, and for the time being we just sit and wait and make her as comfy as possible. Last night I was able to get a mostly nice cuddle out of her (and even one goofy smile) but tonight it’s all about letting her sleep. There aren’t many more signs we can go on right now…and so we wait once again on Nyana’s time.