It was exactly one year ago that Don and I decided to start trying for a family. Working backwards from my “must be pregnant by 30” deadline of early April, we were cutting it close by getting started on New Years Eve. But I’ve never been one to doubt Don and lo and behold, we got ourselves pregnant just in time. And here we are a year later, with a three-month old bundle of awesome, and a half year of hospital stories to look back on.
Never in a million years did I think that getting pregnant and starting a family would be such a roller coaster. In the past year I’ve experienced a gamut of emotions I didn’t even know existed. I’ve learned how possible it is to feel complete elation while at the same time feeling absolutely terrified, and how quickly and comfortably Don and I were able to shift from bewildered new parents to the best advocates Nyana could have. And how, through all of it—through my moaning that none of it is fair, for all my complaining that I’m so over this NICU life—it’s all felt so right.
Christmas and New Years have come and gone and lots has happened in the NICU while Mum and Dad have been enjoying the holiday cheer. She’s well over eight pounds now, though to be honest I’m forgetting more and more often to check her current weight. We’ve finally found a formula and a volume that doesn’t leave her completely bloated and fussy after every meal, and we’ve finally cut all of the additives and hormones and extra calories out of her feeds. We’re working on shifting her to hour-long feeds instead of 90-minute feeds, but overall, she’s fattening up nicely.
The best benefit to getting her feeds under control is that now we can handle her more without the worry of agitating her to the point of puking. This makes cuddle time much more entertaining, as we try out some of the new moves the Occupational Therapist showed us—arms above the head, hand clapping, sight tracking, bicycle legs. We’ve tied a mirror to the side of her crib and she’s completely flummoxed by the baby staring back at her, and we’ve affixed a mobile above her (thanks, Auntie Kim!) that is always good for a silent moment or two of wonder. She’s still not entirely convinced that bathtime is a good idea, but those moments after bathtime when we brush her hair and rub her with lotion and put her in a new sleeper before we sing her off to sleep? Those are some of her favourite times.
Months ago, when Nyana was first diagnosed with BPD and we were shown those scary x-rays of her sick lungs, we were warned about home oxygen and surgically inserted g-tubes for eating, and of a long battle in and out of hospital until she was a toddler. We were told then that “we’ll cross that bridge when we come to it.” Well, here we are, three months later, and I think we need to cross this bridge. Her pressure has gone from 20 to six, and her oxygen needs have gone from 90% to 24-27%. She’s doing awesome! Surely what you told me in the beginning about home oxygen systems and g-tubes… that doesn’t still apply, does it?
We had another grounding conversation with one of Nyana’s doctors on Thursday and we were told that it’s a (90 per cent) fact that we’ll be bringing Nyana home with some tackle. The likelihood of a g-tube for feeding is up for debate: I’m convinced that we’ll prove the doctors wrong on this one and between her love of the soother and the OT-approved positive reinforcement around the face (cheek kisses, headrubs, playing with her chin) we can remove any negative oral aversions she may have to feeding and she’ll take to a bottle like a champ. The oxygen, though, is a pretty certain certainty. The doctor was kind enough to assure us that if we were planning on having a baby in a 700 square foot apartment, Nyana’s home oxygen system would be the least of our space issues. She was also “mostly confident” that barring any unexpected circumstances, she should be completely free of any extraneous breathing apparatus by next Christmas.
Tackle free… a year from now. Sure, it’s been in the back of our minds since those early days back in October, but it’s been so easy to get comfortable with what look like huge steps forward—nearing a full week on CPAP with awesome pressures, knowing that other babies have had higher pressures and more O2 requirements, and they escape tackle-free—that it was a bit of an unexpected blow for the doc to tell us she wasn’t going to be as perfectly healthy as we’d hoped when we finally get to bring her home.
If I’ve been able to find an upside to the news, it’s that 1)people will likely listen to me about washing their hands before touching my baby if she has nasal prongs giving her oxygen at the supermarket, and 2)it somehow makes the story just that much more awesome, in that we didn’t get the easy road to begin with, so why easy it up now? Nyana has taught me so much about strength and patience, but I apparently have a long way to go. Good thing I’m on Nyana’s time. She obviously still has a thing or two to teach me.