I’ve decided to do a Part II to the extubation story, because the triumph that was Saturday night didn’t end on Saturday night. Don and I are still living in a dream world, thrilled beyond belief, yet cautiously aware that there may still be a huge step backwards following our recent victory. I have been warned that in severe cases of BPD, the reintubation rate is just on the low side of 50%. We need to wait for her course of steroids to finish on Friday and then monitor her for a few days to determine if she can keep up this breathing on her own without the medication, or if she’s just not ready yet and needs to revert to the ventilator. I’m not ashamed to ask for prayers that she will be able to keep up with herself once she’s done with the Dex, and that we fall on the side of 50% that we want.
But while we wait, we relish in Nyana’s newfound ability to breathe. RTs and resident doctors and many, many nurses have stopped by Nyana’s crib in spot #4 to congratulate us on this victorious milestone. I swear, it must be an epic event among the staff here in the NICU. Did you hear Baby Brackett was finally extuabed? No, really, go look! After two months, they finally have her on biphasic CPAP! And her oxygen is at 21 percent… she’s breathing room air!
Beside knowing that saying goodbye to the ventilator was a huge step forward medically, we’ve also quickly come to learn that her tackle is lacking the bulk we’ve become accustomed to. Nyana’s extubation removes a great amount of fear around just being able to handle her like a baby. She still weighs in around six and a half pounds, give or take a couple hundred grams, but that’s nearly triple her birth weight and definitely sturdy enough to handle.
This means we can pick her up out of her crib for a cuddle without needing the help of a nurse and an RT. Once she’s in our lap, we can reposition her any way we want without fear of an accidental self-extubation. When she’s gassy or fussy, I can sit her up in her crib and burp her. And on Sunday, her first day of pulmonary freedom, Don and I went for a tag-team cuddle: when he was done with her, after an hour and a bit, he simply passed her off to me instead of calling for help to put her back. Even though we’ve been as involved in her care as possible from the beginning, being able to handle her like most parents handle their newborns feels like our ability to parent our daughter has finally stepped up a notch.
Another huge positive outcome of saying goodbye to the vent—Nyana has found her voice. After two months on the ventilator, unable to make a sound because of the tube down her throat, I’ve spent the past two days listening to my little Princess Chubchub crying. She hasn’t really been crying for any reason in particular—she’s fed, clothed, and comfortable—but she’s quickly figured out that when she makes noise, people come and entertain her. Not a bad way to live, if I do say so myself.
I realized today that she’s been receiving weaning doses of her Dexamethasone for two days now, meaning that for the last four days of her ten-day course, she’s consistently getting less and less of the steroid. She’s been maintaining the same saturations as she was the day we extubated, and her blood gases are all coming back with numbers the doctors like to see, so I’m optimistic that she’ll be fine once the treatment is complete and the worry of reintubation will have been a needless one. I truly do believe that this is the moment we’ve been waiting for, that Saturday will be the day that Don and I remember in twenty years as the turning point in Nyana’s NICU journey.
Her primary doctor told me this morning that she’s begun preparing the discharge summary, the paperwork required to coordinate a transfer to our local hospital just four blocks away from home. Don’t get too excited about this yet, though. That day is still weeks away, and Don and I aren’t entirely convinced at this point that this is good news. We love our doctors and nurses and the little family we’ve created here at BC Women’s and we’re not sure we’ll want to start fresh with a new hospital after more than a hundred days here. On the other hand, having her four blocks from us means we can see her more often and more conveniently, until the day we dreamt of originally—loading her in her Cadillac of a stroller and wheeling her home through the back streets of our neighbourhood.
Only time will tell what happens next, but I have all the faith in the world that we’re in the fast lane now towards the finish line.