Extubated by Christmas, home by Valentine’s day.
Oh, how naive we were just a few short months ago. When we still believed that despite her terrible lung disease, we’d manage to find the easy road through the NICU and be out in record time. That no matter what happened, even if she took the slowest boat she could to the finish line, we’d still be out in time to take her out for heart-shaped pizza and celebrate Valentine’s day as a threesome instead of the twosome Don and I have enjoyed for eleven February 14ths. Even the doctors played along and fed into our naivety.
Of course, we’ve long since come to terms with the notion that she won’t be home today; at the rate we’re going, Easter is looking like an optimistic guesstimate at best. The Valentine’s day we enjoyed today was a far cry from what we’d envisioned months ago: Don was at work on a gross and rainy Monday, I was sick on the couch at home, and Nyana was across the city in the NICU, being cuddled by Nurse Peachy.
I felt this cold coming on late last week, and by Friday night I knew I was going to be out for a couple of days. It’s so funny to think that in the past ten years, I’ve taken less than a handful of sick days from the office, and yet in the five months since Ny’s been in the hospital, I’ve been sick twice, missing a total of seven days (and counting). I suppose it’s no surprise that the most germophobic place in the city breeds the nastiest bugs.
I dragged my sorry self out of bed this morning and kissed Don goodbye, all but forgetting that today was meant to be a special day. As I was contemplating calling in sick to the hospital, I remembered that Nyana’s doctor was starting a new rotation this morning, meaning that a new doctor was on morning rounds. Couple that with knowing I haven’t seen Nyana since we switched her over to high-flow again on Friday morning, I just had to make it to rounds this morning. Partly to see for myself that she was still doing well, and partly to ensure that the new doctor picking up her rotation was on the same page as us.
I was relieved to find Nurse Peachy on shift this morning—somewhere in the back of my mind I knew that she was on today, which made my want to stay home all the more justified. When rounds showed up to our door, I was also relieved to find a doctor familiar with Nyana, as well as the fellow who we’d met back in the Intubation Era. Accompanying them, mixed into the handful of residents and RTs du jour, was an elder doc I’d seen before but never spoken to.
The elder doctor immediately questioned how long we’ve had her on the high-flow and whether we were doing any feeding trials. I immediately went into Mama Bear mode. I explained to this man what he could have easily seen in Nyana’s chart: that we’d been on highflow for 10 days previously, had successfully bottlefed 2x 10mL bottles, and had been abruptly halted by the occupational therapist who did not agree that Nyana should be attempting any oral stimulation while on high-flow. Yet another controversial aspect of the high-flow is that many doctors feel it’s safe to begin bottle feeding, while others feel that the pressure being given from the flow of oxygen is enough to confuse an infant and cause them to aspirate, swallowing milk into their lungs instead of their stomachs.
I was able to successfully talk the doctor out of any feeding trials for a week, and to once again just leave her alone for a few days to figure out her new breathing apparatus. In the meantime, I’ve asked that the occupational therapist to be aware that we are on high-flow and expecting to attempt bottling within the next two weeks. This will give her more than enough time to schedule the barium swallow study that will prove that Nyana can, in fact, swallow liquids without aspirating.
I didn’t stick around the hospital for much longer after that. I took Nyana out of her crib for a quick ten minute cuddle, but felt incredibly guilty that I shouldn’t be near her. We had some quick tummy-time in the crib before Nurse Peachy came in to check on us, and offered to cuddle Nyana while we chatted. This is how I left her today:
I came home, prepared some wonderful ribs for dinner, then sent him a love note in the middle of the day with these three photos attached. I know how much he loves his babygirl and any opportunity to see her during the day is appreciated.
I also included a link to Nyana serenading me with her own special love song, special for today. She’s such a superstar.
Don had a marvellous evening at the hospital with Nyana while I curled up on the couch, played some LittleBigPlanet2, and generally tried not to feel miserable. We rounded out the evening when Don got home with some liquid dessert, Stout Floats. Definitely worth trying one day.
Hope everyone enjoyed a bit of love this Valentine’s day. Next holiday to aim to be free for: Easter!