Yesterday was a good day. The day before yesterday was a good day. In fact, they’ve all been good days since Monday, the incredibly beepy, frayed-nerves day. The day they started the Dexamethasone.
After the intense frustration of Monday, Tuesday morning turned into a complete and utter fustercluck of contractors meant to install new counters in my kitchen; contractors who showed up two hours late and then took a three hour lunch break in the middle of the job. Tuesday’s frustrating morning turned into a frustrating afternoon, until I eventually called my landlord to deal with the aftermath, and took myself to the salon up the street. Four and a half hours later, my hair looked amazing and I had new countertops, but I was too late to make it to the hospital that night. I called Nyana’s nurse before I went to bed and was told that her O2 requirements were down significantly, and that the RTs were most pleased with the results of the steroids thus far.
Over the course of the week, we watched as her oxygen requirements went from 48% on Monday morning to 27% on Wednesday night. We started talking about a potential extubation sometime next week, assuming that Nyana continued responding positively to the Dex. And so we continued weaning her settings all week, and whether it was the oxygen or the respiratory rate or the overall pressure settings, she was keeping up with us on all accounts.
From Wednesday until Friday she consistently maintained high scores while her oxygen was set to 27% and we cut her tidal volumes and PEEP. When I arrived yesterday morning—day four of a ten day steroid course—our daytime nurse told me that there were big plans in the works for Nyana over the next 24 hours. The plan was to turn her pressure setting down to a point where they could mimic what the CPAP machine would give her—essentially, make her breathe on her own with the ventilator set to pick up the slack if need be—and if Nyana could maintain her levels through the night, the decision would be made to finally remove Nyana from the ventilator on Sunday morning. I gave the nurse a bit of a smile and a nod; sure, it’s great to think that the medical team is actually considering extubating her tomorrow, but I’ve been hearing “sometime in the next two weeks” for about two months now. I can’t let myself get excited about Nyana being extubated until after the tube has actually been removed.
I had a two-hour cuddle with her on Saturday afternoon, and she was on her best behaviour, recording high sats and low oxygen. We gave her a bath and she remained on her best behaviour. Don took her out for dinner and still she remained stable. I left for a few minutes to fill my water bottle and talk to Nyana’s boyfriend’s parents in the back nursery, and returned to find Don with Nyana still on his lap, grinning from ear to ear. “She’s doing awesome right now. Why wait until tomorrow to extubate?”
Don filled me in on the plan. While I’d been out gossipping, the RT had come along and made the decision to turn off the respiratory rate. Off. The ventilator that Nyana was attached to was now taking zero breaths per minute, and the monitor Nyana was attached to said that she herself was taking about 60 per minute. I was beside myself. This was all happening so fast. Don continued. They were coming for a blood gas—a test to determine the percentages of oxygen and CO2 in the blood—and if her carbon dioxide and oxygen levels were good, they planned to pull out the ventilator tube immediately after shift change.
7pm. Shift change. Don and I grabbed lattés from Second Cup and then sat in the parents’ lounge telling everyone we don’t want to get too excited, but… When we finally went back in, shortly after 7:30, we saw a group of RTs around Nyana’s crib. Don saw them first—the little blue felt straps that all NICU parents recognize as CPAP straps—and we both realized that it was really happening right now: Nyana was finally, at 76 days old, being extubated.
They removed the Neobar from her tiny face, and after removing the adhesive that kept the vent tube attached, I heard the 3-2-1 countdown of Nyana’s breathing tube being removed. It took less than 30 seconds between removing the ventilator tube and attaching the nasal prongs of the CPAP machine. We snuck in quickly to snap a few shots of her face with zero tackle attached, and then before we knew it, she was back to having stuff taped to her face. But it was the most beautiful thing I’d ever seen. I was ecstatic when they wheeled away the ventilator.
Don and I stayed by her side for about an hour after she was changed over to CPAP, just to ensure that she handled it well and wasn’t about to be immediately re-intubated. Shortly before nine o’clock, when we were convinced that she wasn’t going to regress any time soon, we said our goodbyes to the nurses and RTs, asked to be phoned any time of the night if things went wrong, and headed home.
The bus ride and the subsequent walk up Davie street was a surreal one. We walked mostly in silence, save for a few random cries of She’s so awesome! Neither of us wanted to get too excited, knowing that there's always the chance that she wasn't ready yet, but we both knew in our hearts that of all the milestones we'll cross in the NICU, this one was huge. The transit trip towards the hospital this morning felt like a crawl. We couldn't get back to our Babygirl fast enough to see how well she'd done through the night.
As it turns out, our Princess Chubchub had done exceptionally well through the night. Everyone who's stopped by to see her today—and believe me, that's a lot of people; everyone knows about Nyana who's been intubated for two months and is finally free of the vent—everyone who stopped by is amazed at how well she's doing on the lower support. Even other parents, who have been on the CPAP support for weeks or months, are amazed to see her settings as low as they are.
We've been warned that she might regress once she finishes the Dexamethasone on Friday. We've been warned that we might need to reintubate if she hits a wall and just can't keep up these high scores on her own. But last night, as Don and I marvelled on the couch at just how awesome What We Made is, I realized that I'd finally let go of that nagging fear that she might not make it. Watching her now, finally hearing her cry, I know that we're going to be allowed to bring her home one day. And that day isn't as far away as it once felt.