On A Wing And A Prayer

So there’s not much news coming out of Nyana’s camp these days, it seems. It’s been three months since we brought her home and we’re finding our groove now, finding routines and normalcy among all the not-so-normal that comes with being the proud parent of a baby with a hose for a nose. And in doing normal day-t0-day things, there’s not a whole lot of noteworthiness to keep up to date on. We have a schedule that keeps us busy doing not-so-busy things: morning routines of feeding and bath time and afternoons filled with walks and physiotherapy play time; nurses round out the schedule three or four days a week.

We now have two regular nurses for Nyana who each come at least once a week, and we’re trialing others to complete a trio. We’re about two months into the home nursing now and I’m getting used to it—I even look forward to it some days—though I can’t say with 100% confidence that I’m comfortable with it yet. There’s a strange disconnect for me that I spent more than 200 days yearning for the title of Mum, wanting nothing more than freedom from nurses, and now that I have her all to myself, I pass her off to a nurse to watch while I take time for myself. But it’s exhausting being tied to an eight foot hose and and a feeding bag and a 25-pound battery all day, and a break from the wires and the beeping machines is a welcome reprieve. I usually spend the time Nyana is with her nurses just puttering about the house—grab a quick shower or sweep the floor or run some quick errands sans stroller. On days when we’re without a nurse, my afternoon plan revolves around her schedule, getting out to do daily errands after her noon feed finishes and before her three o’clock feed begins, taking advantage of her second 90-minute maskless trial of the day.

Days without nurses are often appointment days or playdate days. We met last week with the physiotherapy team from the Infant Development Program—a ridiculous trek across the city with Nyana and all the Misters, simply to be told that Ny is in the 25th percentile for her corrected age. This determination seemed to be made on three simple observations—yes, she can sit really well, yes, she can touch her toes, no, she can’t roll back to front yet—and at the risk of sounding like an over-zealous first time mother, I don’t believe the PT’s assessment one bit. I spend a great deal of time comparing Nyana’s achievements to those of the kids in my mom’s group and while she’s not exactly the top of the class, she’s a lot more average than the bottom 25th percentile.

We had an impromptu visit back to the hospital last week, too, to attend to an equipment malfunction. Mr BiPAP decided last week to start acting up, and while the machine continued to do its job and breathe for Nyana, it was reading some wonky data and I wasn’t able to be sure that her settings were being delivered accurately. So we had a quick visit with the good folks in the TCU—transitional care unit, our new home-away-from-home if and when Nyana finds herself hospitalized again—and came home with a loaner unit while our Mr. BiPAP is in the shop. We have two clinic days up at the hospital in August—one visit to the Neonatal Follow-up Team and another to our Home Trach & Vent team—so we’ll just swap our loaner back in a few weeks.

We stopped by the NICU before heading home and were thrilled to find Nurse Sweetie on shift that day. We hadn’t seen her since we’ve been discharged so it was so great to be able to catch up with her. I learned that there was a NICU family BBQ happening in the courtyard at that very moment, so I took the opportunity to wheel Nyana down to see some of our favourite doctors. Somewhere between visiting with the staff and chowing on free burgers I had one of my first true Mom-fails: I sat Nyana in the grass and put my open can of Coke in the grass beside her. Five minutes later I noticed her hand was dripping and her pant leg was splattered with blood, coming from a slice on her index finger. I presume she got her finger caught in the opening of the can, and I kicked myself for a)not thinking about that, and b)not noticing when it happened. The worst part is that the blasted thing wouldn’t stop bleeding! It was a tiny cut, and she didn’t seem bothered by it in the least, but her hand was just dripping blood. I had a millisecond of a panic; where in a hospital do I go for such a superficial injury? I slipped us away from the BBQ, headed back to the NICU, and asked the receptionist for a Band-Aid while I used their hand sanitizer to clean the wound. Mom fail? Maybe. Mum to the rescue? Definitely.

Don and I like to enjoy a glass of wine at the kitchen table after the dinner dishes are done and Nyana is asleep for the night. A few weeks ago after a particularly rough and screamy day with Nyana, we congratulated ourselves on the great job we’re doing as parents, even if we’re learning as we go. And in that moment, we had a revelation, a sudden realization that our parents have been keeping a secret from us for more than 30 years: they were just making it up as they went along, too. I mentioned this to my own mum a few days ago and she just laughed, knowing she’d been found out. This parenting business is a day-at-a-time adventure, regardless of tubes or beeping machines or nursing schedules. It’s not going to be easy, and I’ll bet Don and I even make a few mistakes along the way. But hopefully our mistakes will build character, and Don and I will do a good enough job of building childhood memories for Nyana, even if we’re making it up as we go.