I’ve had this post brewing in my head for probably the past six months. I’ve never quite known where to go with it, but tonight I think I finally have the motivation and direction that I needed to finish it off. You see, today was ever-so-quietly a huge day in Nyanaland. At noon today, she finished her one-hour bipap treatment and we put Mr. Bipap back in the bedroom…for good (hopefully, knock wood and cross your fingers). Tomorrow, we officially start having bipap on only during nights and naps. Tomorrow is the first day where she doesn’t spend any waking hours hanging our with Mr. Bipap. She’s still on oxygen through her nasal prongs, but with her new 7′ extension tubing she now has 13′ of freedom and can trek all over the living room, hitting all the major landmarks (couch, table, toys, playmat, etc) with very little trouble. As exciting as it is, we are trying to maintain a guarded approach and will be having a pretty chill weekend so we can keep an eye on her during the big switch, and to make it as easy for her as we can. But it’s still pretty exciting!
This is it, the first big step in a big way. Big Girl breathes all on her own (as long as she’s not asleep). I know I’m supposed to be overjoyed in a major way – and I am, we both are! – but there is a still a sad, small voice tugging at the back of my mind, that’s quietly saying good bye to one of my girls. It sounds strange, but Mrs B and I have been discussing it back and forth lately and agree that when you have a bipap baby, you really kind of have two babies. Of course you only ever have one baby (at a time) but often it seems like you do indeed have two – the one with the gear and the one without – and as Nyana’s lungs improve and she can begin to enjoy more time off bipap, I’m noticing that my time with one of my daughters is drawing to a close. I know it’s an amazing thing and such a huge step forward for her health, but I will still have to say goodbye to Our Little Bipapper.
At first it sounds like such a small difference that would become just something you get used to and get on with it. In a weird way that’s exactly it, and that’s part of the problem. See, in the beginning, when she had a mask on 24/7, that’s what we got used to. When we thought about our daughter, that was the face in our minds. That was the face of What We Made, mask and all – sometimes mask first and foremost. It was always a little weird as she switched between ventilator machines and we had a new mask to get used to because the mask was such a big part of her, and seeing her face completely tackle-free was a rarity. Then, after Nyana got to a certain point where her mask-off time was getting fairly substantial, we started to get familiar with her in both ways – mask on and mask off. That’s when we started to notice differences in her in each state and found that at times we had two different girls that we were dealing with, being driven by the schedule of the tackle she was hooked up to. It started with the hose for a nose and just went from there, and soon our two little girls would be messing with our minds.
There were many times that both of us felt a comfortable wave of “oh, there she is!” once or twice (or more) when we were putting the mask back on. And of course, we would have that same sensation when taking the mask off as well and we got to see her au naturel but that seems natural and normal. You’re supposed to be happy to see her face bare. It doesn’t seem normal to miss the mask and be just a little bit glad to see your little girl behind it again. That seems totally wrong and messed up. But there’s something about it, something about the mask and how it changes her a bit. Somehow her eyes just pop from behind the gear, and she has a deliberate way of zeroing in on what she wants to see, despite her central peripheral being obliterated by plastic. It often translates into a very determined stare, especially when she’s on the move and working around the cumbersome hose. I love how she gets this big, goofy, drooly smile that you can see in the picture, but what the camera doesn’t tell you is what all of Mr. Bipap’s extra air pressure does for her smile. It’s much droolier, a bit frothier and there’s a lot of air pressure there that sometimes releases itself in fun ways. Sometimes her lips will just run motorboat all on their own, if they’re drooly enough. Sometimes she likes to do it on her own – she’ll give her lips a jumpstart and bipap takes over – and she can entertain herself burbling away for quite some time.
I love her determination in spite of the hose. I love how she’s adapted with it and doesn’t let it discourage her from going after what she wants. I love, love, love it. I’ve seen her battle that hose and its limitations for almost a year now and she never gets down about what she has to truck around with. I’ve seen her crawl through it, over it and under it, stepping around it on the floor without even looking down. I’ve seen her hit maximum extension and spin around to look at it, then with a one-handed grab just yank the hose right out of the base, then turn back around and keep going, trailing 6ft of hose from her face like it was a the next big trend. I’ve also seen her do it no-hands. I’ve seen her pull it sideways off of her face and I’ve seen her lean into it like she couldn’t wait to get it back on. She’s fallen asleep while I’ve strapped it on before, while other times simple adjustments have prematurely ended more naps that I care to admit. How she moves a toy around the hose to her other hand to get a better angle to get it into her mouth, or how she pulls the mask down over her top lip and sucks on the nosepiece, all of these wonderful memories and heartwarming moments are coming to a close. Thankfully, of course, but still…kinda sad. And weird that it’s kinda sad, and why do I feel guilty for being sad that Mr. Bipap lives in the bedroom permanently now? It’s messed up, man.
We’re happy that tomorrow is finally here. It’s 2AM right now and it’s really today already – I can’t even believe it. No Mr. Bipap unless she’s asleep, doctor’s orders. Crazy. Good night, good people.