Nyana was supposed to be a Christmas baby. Her original due date was December 17th, and from the moment we found out we were pregnant, Don and I looked forward to the holiday—our first Christmas as a family after spending almost a decade’s worth of Christmases as a twosome. And then before we knew it, I was locked up on bed rest and then it was September and her two-pound arrival dashed all hopes of a happy family Christmas at home with a newborn. For a few optimistic weeks shortly after her birth we still hoped that she’d just ride out her third trimester on the outside and still come home just before Christmas, as planned. But of course, “as planned” never happened. And so we spent the whole of the following year healing and growing and regenerating lung tissue, and when December 1st arrived, Don and I started to get excited about her first real Christmas, finally, 15 months after she was born.
Then two weeks before Christmas, she got sick.
I’d gone to the public library one afternoon and I signed out some board books for Nyana to enjoy. I brought them home and rubbed them all down with alcohol, but I must have missed one. That’s how easy it was to land her in hospital for two weeks. Her respirology team is amazing and they were able to spring her on Christmas Eve, but by that time it was too late. We’d missed our window of opportunity. There was no Christmas tree, no baking, no presents wrapped and waiting. We just hadn’t had the time, or quite honestly, the motivation.
And so, for the second year in a row, it seemed Nyana’s crappy lungs had stolen Christmas from her.
But, no. Nyana’s lungs had tried to steal Christmas from her. We weren’t going to let it. Instead, we decided to postpone Christmas until we were ready. We chose a date in the future that gave us time to prepare, and we declared Saturday, February 11, 2012, Christmastimes Day.
We did it all. We put up the tree and hung strings of lights in our apartment, and put giant silver bells on the front door of our suite. In the weeks leading up to Christmastimes we played Christmas carols and Don baked batch after batch of cookies—and decorated and delivered them to friends in packages tied with ribbon and candy canes. We had mimosas on Christmastimes morning and turkey for Christmastimes dinner, and we proved that as long as you believe it’s Christmas, you can make it feel like Christmas. It was, hands down, the best Christmas ever. I do say Nyana would agree.
Right? Best Christmastimes ever!
But wait there’s more!
The Tuesday following Christmastimes, Don and Nyana had a visit with Dr Dee up at the hospital. This was Ny’s second visit back to respirology since her flu bug in December, and at the rate we’ve been going and with the precautions we’ve been taking, I was expecting nothing more than a reminder to keep her healthy and an appointment card for the spring. Don texted me from the Skytrain when he and Nurse Julie were on their way back from the appointment, said they’d meet me at the coffee shop outside my office as they passed by. Big changes in store, the text said.
Big changes indeed. We’ve spent the past week increasing the duration of her maskless trials from two hours to three. This means she’s allowed a total of nine hours a day free from Mr BiPAP. Considering she sleeps 11-12 hours through the night and naps two hours in the daytime, that leaves a maximum of two hours in the day that she’s awake and tethered to that blasted machine. After three weeks of the three-hour breaks, we’re allowed to drop those last two hours of bipap time, and let her spend the whole day with just her oxygen prongs. She still needs to hang out with Mr BiPAP when she sleeps—and that won’t change for a long while still—but being this close to saying goodbye to daytime bipap is huge. In six weeks from now we see Dr Dee again and if Ny is still keeping up, we’ll lose the daytime O2 as well.
It took a couple of hours—a couple of days, even—for the news to all sink in when Don told me the plan. Naps and night time. We’ve talked about getting her to needing bipap for naps and nigthtime only since before leaving the NICU. It’s always been the end goal, way way down the road, always out of reach with a million mini-milestones to tackle first. Now here we are, standing at the end of the road at the verge of a very steep cliff, a wean that is coming quickly and if all goes as planned, will happen quickly. Fingers crossed that this time “as planned” pans out.