Life is a funny thing, like a river that you get swept up in for months on end, twisting and turning this way and that, holding your head above water as often you can, until finally you get spit out into calm for a while; finally you have a chance to look around and think, wow, I’m a long way from where I started. Life in Nyanaland has been a white knuckle adventure for the past 13 months, and with each passing day, the waters are finally starting to calm and the adventures we had are becoming a distant memory. And as I take a look at the little girl in my midst, I can’t help but be in awe of who she is today.
She really is the best little person anyone could ask for. She has the most amazing pesonality—playful and almost coy at times—and she’s pensive and inquisitive and usually content to entertain herself with a book or a stacking toy nearby. I’m loving watching her grow into a little girl; it’s almost as though every new trick she learns allows me to let go of the lingering memory of a fear I once held of what she might never grow up to be. As though every time she learns something new, I’m reminded that we’re well on our way to crossing a finish line completely unscathed. I get lost in watching her explore and absorb the world around her, and I never want to forget how perfectly awesome she is at this age.
- She grew a tooth! Last Thursday, on day 410 of life, Miss Nyana finally sprouted a tooth. We’d had a week of fussiness and a few Tylenol-dependent nights, and I swore up and down that this was finally it. I’ve been blaming every unexplained cry, every drooling fit, on teething since we brought her home from the hospital—likely even while in the hospital—and if we hadn’t had a recent chest x-ray that showed there were in fact teeth in the jaw, I’d likely have been on Google searching whether or not it was possible for micro-preemies to be born without teeth. She’s currently cutting the bottom right of her front teeth, and if her rough unsettled sleep last night is any indication, we should have another one break through shortly.
- She crawls. She learned this trick about two weeks ago, but she’s still not 100% sold on it. It took a lot of coaxing and a lot of practising with Mum before she finally got the hang of it, but still she’ll only do it if she really wants the toy just out of reach. The good thing about her finally learning to crawl, though, is that she now has the missing link between lying flat on the ground and sitting upright; up until this point she was missing the critical ‘pull to hands and knees’ motion needed to get from prone to bum. But for the most part, I’m not convinced that she’s deemed crawling most efficient method of travel.
- She cruises. And how! Standing is just about the best thing ever—still the best thing, has been for months—and while she’s not quite confident enough to stand unassisted, she rocks the one-hand hold on just about everything as she cruises from toybox to furniture and back again. She’s also getting really good at taking steps across a room with us holding both her hands, but she’s still just a bit shy of the strength and coordination to win against gravity all on her own. The fact that she’s not yet walking is actually of relief to me—as of yet she is content with the small space the tether of Mr BiPAP affords her, and I’m not looking forward to the day she wants to travel further than her hose-for-a-nose will allow. Cross that bridge when we come to it, I suppose.
- She’s a social laugher. You know that person at the party who always laughs at all the jokes, even if they don’t understand them? That’s Nyana. Her face lights up when she sees Don and I laughing at something, and it’s not long before she gives us a giggle, too. It’s the funniest thing when Don and I are just having a conversation about our day, not realizing that Ny is paying attention to us talking until she starts laughing when we do. It’s a good thing she’s giggling alongside us already; we do a lot of laughing in this household.
- She’s a side-sleeper. I smile every time I peek in on her sleeping and find her on her side. I’ve always been a side sleeper and like to think that this is a little piece of me in her. She just looks so cute and tiny, resting on her cheek, one knee tucked into her chest. Of course, sleeping on her side also increases the likelihood of her mask not sealing properly—it’s not uncommon to hear Mr BiPAP beeping off his alarm, and walk into her room to find her on her side, mask pressed into one cheek and air whooshing out the other—but she’s so adorable, it’s worth ducking in to check on her.
- She lurvs her kittehs. Nyana and the cats have officially met. Ny has been curious about the cats since shortly after bringing her home, but it’s taken some time for The Girls to warm up to the idea of being knocked a spot on the priority list. But they’re starting to come around now—I think a part of might be that they’re so desperate for attention they’re willing to walk into Nyana’s space to get it—and they’re actually letting Ny get a hands-on experience. Her eyes get huge with excitement and she lets out the best little squeal as she grabs a tuft of fur. Hollywood is eleven years old and Sofie is ten, and while neither of them seems to have an abundance of patience for Nyana, I’m thrilled that despite their crotchety old age, they seem to be making an attempt at friendship.
- She finally aced her respirology clinic. As a follow-up to our busy month of hospital admissions and reflux and new j-tubes, we had an appointment early last week with our respirology team to see how everything was going with the tinkering we’d done. Dr Dee quite literally did a happy dance when we lifted Nyana’s shirt to show off her work of breathing. It was such a nice affirmation to know that the miserable month that we’d had wasn’t all for naught, and that Nyana is finally making some visible progress. We agreed to keep everything exactly as it is for one more month, and if we’re still seeing the excellent work of breathing and fantastic saturations then as we are now, then we’ll begin the slow process of weaning her off of BiPAP. Dr Dee is generally hesitant to begin weaning support during the winter months when the risk of getting sick is greater, but with Ny’s mobility beginning to be an issue, and with concerns about Nyana’s facial structure and palate if we continue her BiPAP , weaning through the winter seems the best scenario, assuming we can keep Nyana healthy.
Day by day we leave the old life behind, and day by day we lose sight of where we began. Of course we’re still not out of the woods—even this afternoon we have our medical team at BC Children’s moving their calendars around to see us unexpectedly, as Nyana has reverted to her gagging, retching, desatting ways without explanation—but as I watch her become more and more of a little person and less and less a sick baby, I can’t help but marvel how wonderful it is to fall in love a little bit more every day.