It’s Wednesday night (or Thursday morning, depending on how picky you are with your clock) and tomorrow is my Friday. Grannie arrives sometime during the day while I am at work and then I have Friday off, so…just one more day to get through. The days are getting long (or is it just that damn hallway??) yet at the same time they are flying by. At any given time, talking with someone about our release date can either feel like it’s just around the corner, or a thousand days away. It may have something to do with work being horrendously long (sorry, co-workers, it’s not you – it’s me) and my daughter time horrendously short. And with Karen being sick for the past week, my time with her has also been cut right down to barely anything at all. In short, this week kinda sucked and I’m looking forward to Grannie’s visit this weekend.
On top of that, Ny has been an absolute superstar Princess for her third trial on highflow. Since she went on last Friday, her numbers have been consistent with her CPAP numbers, and she’s had some good stretches of zero desats. She’s been alert and awake and bright-eyed often, and while she’s enjoying the extra mobility that highflow allows, she’s still getting used to the new exercise regime that highflow allows. Just in time, too, because that huge fuzzy head is going to be very unwieldly soon if she doesn’t start putting some neck muscles into that roly-poly body. I’ve finally harnessed the power of my shoulder, and we’ve had some huge success hanging out there. No pukes, nice sats, good resps, and she’s moving her head around looking at anything she can. Her jukebox has been very Beatles-heavy this week, we drew her some more nice cuecards on some better, stiffer paper – AND!!!! Oh, I almost forgot the awesome pillow I got on sale for $20. I likes me a good bargain, and Nyana seems to like the pillow.
Of course, when Nyana ramps up her irresistable factor she becomes, well, irresistable. Usually it’s not a problem. I’m more than happy to oblige Princess Piglet in a cuddle or a singsong or a story or whatever. In fact, just tonight when I showed up I was tired and she was already sleeping and I thought “hey, maybe I can just hang out for a bit and get that blog post started and then go home early tonight”. Then the RTs show up to give her the puffer and the nurse comes in to listen to her lungs and check her over. I take the temp and change her diaper – by the time all this happens (just in time for her 9pm feed) she’s wide awake and ready for a visit. Just like that a quick, early night becomes full-on active cuddle time. I’m not mad at that, how could you be? She’s awesome, we’re both happy. Because of that, though, more and more these days it’s the leaving for the night that’s getting harder.
It’s always easier to walk away from a sleeping baby, so the ideal situation is to get her dozey after her 9pm feed which finishes at 10, but the bus is at 10:30 so you kind of have to move quickly. Since she gets drowsy with her feeds, it’s usually pretty easy – just plug in the soother, dim the lights and hum something. Tonight was like that. But some nights (Sunday and Tuesday, for example) she just won’t go to sleep. She’s awake, she’s happy, and she’s lying there just waiting to hang out. She’s calm, yet playful, and she just looks at me expectantly like I’m going to do something amazing that she doesn’t want to miss. And it sucks to have to walk out of that room and pass her care off. The only thing I really want to do is stick around and play – my weeknight visits are only about 2hrs at best – but I’m already pushing it getting home as late as we do because I’m still up for hours just winding down to go to sleep. Even right now, it’s 1:35am…but I’m not done.
When I do force myself out of there and bus it home, I get to hang out with Karen, finally. Except with her being sick, we’ve been on a strictly-limited-contact-basis this week. No kissing, no cuddling, etc. It’s hard to quarantine yourself in a 1-bedroom, but we do what we can however crappy it may be. We’ve done the whole “sick at the same time” deal in the NICU already and it was terrible for all three of us. (if I was Karen, I’d do a fancy link back to the post that talked about it, but I’m on borrowed time as it is so please feel free to look for it yourself, thanks) There’s no way we can do that again. Luckily, it seems we dodged that bullet this time as Karen is feeling better now and I’m not feeling sick at all, knock wood. Dang, my knuckles are getting sore.
But wait, there’s more.
Inside her room, there is a smell. It’s a bit of a…rotten…smell. Like…garbage? Or something. It’s hard to pinpoint, and equally hard to locate. The smell came up the day before yesterday and I thought it would be something that needed cleaning and be done with. When it was still there yesterday, I went on a thorough check of the crib and room and couldn’t see anything that could be the source of a garbagey smell.
I mentioned it to the nurse, and then came home and mentioned it to Karen. She went in today, with Nurse Awesome on shift, and the two of them went through the room, wiping down all the bars on the crib, changing all the bedding, looking into all the dark places of the room, and still couldn’t find anything.
The smell was still there tonight.
I had three RTs in at one point but none of them were of any use at all. One could only smell my coffee, one couldn’t smell anything at all, and the other spent his time smelling the garbage can by the doorway – about 8 feet away from the source of the smell which, of the four of us in the room, only I could actually smell. So I had a nice little “I’m not crazy” conversation in my head until our night nurse came in and confirmed the funky smell. She said she would investigate thoroughly after I left, but still…on top of everything else now I have to leave my daughter in a stinky room? Are you kidding me? Even while I was there, it was all I could smell. And let me assure you I put my nose on everything in that room and sniffed until my nose went dry but I could not a thing, it’s bizarre. But it was there, tormenting me with its elusive presence. In her room. I felt like I was leaving her to sleep in a garbage bag. It was terrible.
And that’s where we are tonight. The good news is that Nyana is doing well. We’re getting close, yes. But close can still be quite a ways away. Every good day she has is a victory, and at times it feels like the victories mean more now than ever. When you start to get close, you start to get hopeful. But you still have to remember that the time will take as long as it takes and sometimes it takes a long time.
On Sunday it will be five months…and right now it’s almost 3am.