Nyana told me that she promised you guys some more posts. That she logged in here the other night and was dismayed to see that her journal—the place we keep her stories to look back on and enjoy one day—has been sitting here stagnant for the better part of two months while we all went about our mundane activities, keeping ourselves busy with boring stuff like moving and growing a new baby and learning how to breathe. Sure, it’s been busy, but that’s no excuse.
Don and Nyana and I made our way out of the ‘burbs and down to Granville Island a few weekends ago—a trek that used to be a quick 15 minute walk and now took us the better part of an hour—and we enjoyed a potluck picnic in the sun with Nyana’s old beep buddies. It was arguably one of the hottest days of the year and the kids reconnected over the playground while us parents reminisced over potato salad. As we attempted to arrange all six kids for a portrait, I remembered back to this time last year, to how the very same picnic a year ago found me weeping in my wine at the end of the night, frustrated that Nyana was different than normal babies.
What a difference a year can make. A year ago, we’d had Nyana home for three months. She was hanging out with Mr BiPAP 21 hours a day. Our beautiful babygirl had a hose for a nose and required two litres of additional oxygen per minute to breathe, and everywhere we went, with her stroller laden with pumps and machines and batteries, people stopped and stared—and not in a my, what a gorgeous little girl! kind of way. Yet through it all we were still putting on our best faces and going about wishing it didn’t bother us so. I have to be honest: it wasn’t easy. It certainly wasn’t easy, a year ago, to spend the afternoon with families who could have drawn our card, and not feel pangs of jealousy and frustration that we drew that card instead. But looking at where we are today, how I wish that back then someone could have made me believe that sometime in the very near future, all of it would feel like the very distant past.
At our last visit with Dr Dee, a little over a month ago, Nyana was officially discharged from the Home Trach & Vent clinic. She’ll still be followed by the less intensive Respirology clinic, and followed by a doctor who has been involved in her care since her NICU days, but she’s officially no longer Dr Dee’s patient. It’s a bittersweet moment for us, same as it was when leaving the NICU—of course we want to be discharged because it means she’s getting better, but discharge also means saying goodbye to people who have been an integral part of our family from the very beginning. But Dr Dee reminded us that she’d much rather see us as visitors and not as patients. Bittersweet for her too, I’m sure.
At her next visit back to the hospital, to see just the respirology team and not the Trach & Vent Clinic, we were given orders to D/C the two diuretics she’s been on since we brought her home, as well as the anti-reflux med she’s been on since we traded in Mr G-tube for a J-tube. Last week the people from the oxygen supply company stopped by to officially take Mr Compressor (AKA Darth Oxygen) off our hands. And just a few days ago, at a nutrition services appointment, a plan was put in motion to begin the wean from a J-tube to a G-tube to oral feeds. If all goes well—and of course, that’s a big if—we could see Nyana taking upwards of 75% of her daily calories orally by Christmas, needing Mr Foodpump only to top up her daily intake while she sleeps. This whole “I was a preemie” phase really is almost over.
And it’s fitting that it’s all coming to an end now, as a new chapter in our lives is beginning. Nyana will be a big sister in less than four months. We’ve been in our apartment in the ‘burbs for almost two months now, leaving our overcrowded downtown apartment long behind us. We’re getting excited at the idea of a proper Christmas at home for once—this time with a newborn—and we’re looking forward to becoming a fambly of four. I took a week vacation earlier this month and the three of us spent nine days doing normal family things, things that this time last year I found myself resentful that we were unable to do. A year ago, things like Nyana splashing in the lake or petting a cow at the PNE seemed like things we could never do. But less than a year later, here we are.
And here I am and here’s 2.0. 25 weeks and counting. No sign of slowing down.