We’ve looked ahead to a lot of milestones in our near five months with Nyana, and we’ve past most of the biggest hurdles already. But of all the milestones that we’ve been reaching for, today’s is pretty much the biggest we’ll encounter in the NICU, aside from taking her home. Today, we snuggled her up tummy-to-tummy with me, and we took off her CPAP, and for two and a half hours, she breathed on her own.
No oxygen, no pressures. No tighty-whitey hat and no straps pinching her cheeks.
No nasal prongs and no tubes tangling with crib bars and glider rails. Just she and me, nearly tube free, for two blissful, beep-free hours.
I missed rounds this morning and was a bit upset when I arrived to hear that the doc had ordered a ‘time trial’ off the CPAP to see how well she’d tolerate without it. I was really enjoying our week of zero changes, and as I was voicing my concern about the plan to Nurse Awesome, I realized that it’s been ten or eleven days since we asked the docs to leave her alone for a while. Even though we’re on the government’s dime, we can’t just let her lounge like this is an all-inclusive resort. I guess we have to take the next step eventually.
Nyana’s doctor wanted just a timed removal of the CPAP for as long as she could go, just to gauge how capable she is on her own. Not expecting more than ten minutes, fifteen at most, Nurse Awesome removed the mask and the prongs at 11:40am, twenty minutes before Nyana’s noon feed. At 12:10, half an hour after we’d started, she was still saturating in the 90s, after only one dip into the 70s requiring a quick kiss with the oxygen mask. Her feed was ten minutes late, and she looked like she was starting to trend a bit low, so we put the CPAP back on, started her feed, and informed the doc of her success.
He wanted to know why we’d cut her off at only half an hour (we were nervous about starting her feed without respiratory support). I talked with him while Nyana fed; he wanted to take her off for at least an hour if possible, and as much as 90 minutes if she’d make it that far. For us to have an idea of how ready she is to breathe on her own, and how dependent she really is on the CPAP, we have to push her as far as she can go and make our plan forward from there. He said we didn’t have to do it today, considering the half hour she’d just done, but if not today, tomorrow. Nurse Awesome is on nights tomorrow and I didn’t want to have an unfamiliar nurse tomorrow diagnosing what was or wasn’t normal for Nyana. I agreed to do it today.
At 2:15 this afternoon—thinking we’d have enough time to get the mask back on, back in the crib and diaper changed in time for her 3pm feed—we settled her in for a cuddle and removed the CPAP for the 2nd time today. I spent the next 45 minutes looking at her, looking at her monitor, looking at the clock. Every five minutes or so I would get this goofy grin as I realized that she was actually breathing on her own. I’d keep checking the clock, and keep checking her high scores, and Nurse Awesome would keep coming in marvelling at how awesome Nyana was doing. I was dumbfounded. Time for her 3pm feed came, and we decided to feed through the trial. Again, Nurse and I scoffed at the notion that we could feed off CPAP—she’d either desat, or vomit, or more than likely, both. We outfitted Ny with a bib, stuffed my pocket full of wipes, and with her still breathing all on her own, we started her feed.
I continued my baby-clock-monitor checking and before I knew it I heard the beeping of her feed finishing. We’d had a few small dips along the way but nothing to write home about, and saturated in the mid- to high-90s for much of her feed. At 4:15, a full two hours after taking the CPAP off of her, we plugged her back in, and only because we’d already gone half an hour over what the doctor ordered, not because she was showing any signs of slowing down. We need to discuss it in rounds in the morning to have it on the books, but we’ve officially been given “CPAP off for cuddles” status, two hours at a time, twice a day.
Today is the day I’ve been waiting 137 days for. The day they all told me would come one day. The day where something just finally clicks. The day she would prove she could breathe on her own. We’re still weeks and likely months away from walking out the front door of the NICU, but this is the biggest step forward we can make. It’ll take Nyana a while before she spends more time off the machine than on, but knowing she can do it is, frankly, amazing.