For more than one hundred days now, I’ve felt like I’m chasing a carrot dangling in front of me. I’ve set milestone after milestone to make the march towards the finish line feel shorter than it’s really been, and as soon as we’d reach one milestone, I’d be already reaching for the next one as we were celebrating. Gaining weight. Off the morphine. Off the ventilator. Constantly reaching for that next step towards home. I’m slowly realizing that we’re running out of milestones. We still have a few to hit, but “home” is a very near reality now.
A little more than a week ago, I was skeptical when I walked in to see her trying her 2nd CPAP attempt. This morning—eight days after switching to CPAP and still going strong on the lowest pressure setting—I made it to the hospital in time for morning rounds and sat in on the decision to downgrade Nyana from her CPAP (oxygen + pressure) to high-flow (oxygen only). High-flow oxygen means nasal prongs only, and the RT came shortly before noon to remove Nyana’s gear. No more CPAP hat. No more scuba gear on the face. No more straps holding the contraption so tightly her poor chubby cheeks spill out the sides. High-flow also means that Nyana’s hairbrush regained its rightful place by her head inside her crib. And sure, I’m probably the most biased of all, but she looks pretty damn cute without all her tackle on her face, yes? (Lucy, Nyana thanks you for the ducky outfit. One of her favourites. Her nurse loves it too, ’cause it’s full snaps. How did you know??)
Nyana’s had a long road through the NICU, to be sure, but for the most part we’ve gotten lucky that we’ve had one issue only, and that our one issue is something that time will heal. I’ve tracked our course from those very early days: ventilator to CPAP, CPAP to room air, then learn to feed and we’re out. As it became more evident that Nyana was going to be coming home on oxygen, our “CPAP to rooom air” goal shifted slightly and our new course became CPAP to high-flow to low-flow (which is what we’ll be discharged on) and then feeding and out. Our move to high-flow today reaffirmed my belief that the docs haven’t been lying to me all these months when they tell me, “We don’t keep them here forever, you know.”
As exciting as it is that we’ve moved her to high-flow, the primary reason for the shift was to finally initiate feeding as soon as we can. Nyana is more than term now, and for the past three and a half months has had every drop of formula delivered via ng-tube directly to her stomach. Add two months of ventilation with a breathing tube and an oral aversion is likely. Despite objections from numerous doctors and RTs with numerous points of view, it would appear that Nyana will soon break convention in our NICU and become one of a very small handful of babies to attempt to take a bottle while still on respiratory support.
Adding to her challenges, Nyana is currently being fed on 90-minute cycles, meaning she has a pump that slowly delivers 75 mL of food over 90 minutes, and this repeats every three hours. We’re supposed to convince her to spend 20 minutes manually sucking for every drop? I’m afraid we’re in for a long road, hence the elation at getting a head start on it. During the next few days as we acclimatize her to the new high-flow breathing apparatus, we’ll gradually increase her feeds until she’s taking the same 75 mL volume over only half an hour.
I’ll be honest: I wasn’t expecting much this morning when they switched her over, and I’m still not. Maybe I’m protecting myself from disappointment but it’s so easy for every little step forward to feel like a huge accomplishment. She looks great, and she was doing well when we left her tonight, but I don’t want them to push her too hard, either. There’s another baby in the nursery—one of only two now with more clout than Nyana—who has been struggling with her lungs since August. She took a giant step forward, the doctors pushed her a bit too hard, and weeks later she’s still recovering from two giant steps back. I’d rather be patient (yes, I said it) and take a slow road forward than rush Nyana and find ourselves further behind where we are now. As with her CPAP attempt, I’m anticipating we’ll stay on high-flow for a few days before she shows too many signs of fatigue and we revert to the scuba gear for a little while longer.
We’ve heard from doctors and fellow parents alike, that every baby is different, but every baby has a moment where it all finally clicks and they just get it. The realist in me doesn’t want to get excited but the Mum in me is hoping and praying that Nyana finally caught up with herself. Feeding is definitely going to be a long, frustrating road, and coming home on oxygen is going to be an experience and a half, but the end is near. It’s so close now.