I thought we were out of the woods now, and done with steps backwards. I foolishly believed that after the weeks of successes we’ve had getting her off the CPAP and onto a bottle, we were done with moving backwards, and were focused solely on the finish line. That no matter how slowly we’re crawling towards it, the end is in sight, and there’s no turning back now. It would seem then, that for all the want and need of a plan that RTs and doctors and OTs and nurses will all stick to, Nyana didn’t get the memo where we need her to stick to the script, too. And this morning, instead of weaning her oxygen flow from 5L/minute to 3L, as has been the plan, we found ourselves upping the flow to 8L, with a CPAP machine on standby, just in case.
It’s been two and a half weeks since we said goodbye CPAP, hello high-flow. On February 11th we started her on 6 litres per minute, and after ten days of high scores and reasonable oxygen requirements, we weaned the flow to 5L last Tuesday. RT Awesome and I discussed weaning the flow to 4L or even to 3L near the end of last week, but with bottle feeding in mind decided to play it safe and wait until after the weekend to do any further weaning.
Nurse Awesome was on day shift on Friday and I was so excited to show her what a superstar Nyana was with the bottle. Even though on Thursday she’d been incredibly disinterested in the nipple, and getting her to swallow that tablespoon of formula was almost forced, I figured it was just a one-time issue and we’d be better the next day. When I tried to feed Nyana her 20 millilitres on Friday, she flat out refused. She chewed on the bottle nipple, then scrunched her face as though the bottle was the most retched thing ever, and pulled away, crying. When I finally gave up about fifteen minutes later, there were 17mL left in the bottle, and 2mL dribbling down her chin. This time I chalked it up to her being a diva, refusing to work for what will eventually be delivered directly to her stomach anyways. Never did I dream I’d be so close to the truth: that she was trying to tell us that she was too busy trying to breathe to exert so much energy on a bottle.
On Saturday I was late getting to the hospital (a girl deserves to sleep in on a weekend) and missed an attempt to bottle her at noon. She was fussy and needy and somewhat lethargic, and with a few bugs floating around the hospital, Nurse Awesome and I wondered if she might be coming down with something. We decided to give her some rest and not risk oral feeding anytime at all on Saturday. By the time Sunday rolled around, the fussy not-herself-ness continued, now accompanied by significant increased work of breathing. In medical terms it’s called sternum indrawing; in layman’s terms, and in the linked video, you can see a distinct divot in the centre of her chest as she struggles to fill her lungs.
Don and I called for an RT to come look at her when we noticed just how hard she was working on Sunday afternoon. As the RT du jour was heading down to see her, I noticed an RT from another rotation who knows Nyana quite well. She assessed our Princess Chub, gave her an extra dose of her Ventolin® puffer, and she and the dayshift nurse called radiology for a chest x-ray for our poor little bean. The RT feared that Nyana had aspirated a small volume of formula, I was afraid that we were on the verge of collapsing a lung. The lab was also called to do a blood gas on her.
Don and I stayed at the hospital on Sunday night until about 8pm, until we had a chance to chat with Nurse Awesome after shift change and go over the events of the day. We left Nyana knowing she was in good hands, yet we weren’t surprised when we phoned the NICU well past midnight and learned her flow had been increased to 6L from 5. When I arrived for rounds this morning, we made the decision to up the oxygen flow to 8L/minute, as an alternative to putting Nyana back onto CPAP.
A second CXR was ordered for this morning when rounds determined that her sternum indrawing was again quite severe. This morning’s x-ray, like last night’s, came back showing no further deterioration, and no alveoli collapses, but no significant improvement over the last x-ray from early January, either. Her lungs are still severely cystic, and still stubbornly improving just a fraction at a time. We need to be sure we think carefully as we evaluate the need to breathe vs. the need to feed. We’re nearing a point where we need to make a decision.
Nyana has an upper GI study booked for 10am on Tuesday morning. This test will tell us with much more certainty if Ny is having difficulties with her feeds for any reason other than work of breathing. I’ve been feeling lately like we’re being pushed to accept that a surgical feeding tube is the best and only option for Nyana, and that any attempts to orally feed are interfering with her ability to learn to breathe. I understand the concern about learning to feed and breathe at the same time—anyone who has ever gorged themselves on a turkey dinner understands the correlation between a full stomach and difficulty to breathe—but I hate that surgery seems to be the best option at the moment. It feels like giving up. Of course Don and I are open to whatever is best for her, but we’ll fight against the g-tube until we’re certain that we’ve exhausted all other options and we’ve run out of time. We’ve survived more than five months in the NICU without a surgery; it would be oddly ironic if the first and only surgery Nyana needs, as the daughter of two who love food and love to cook, is a tube to help her eat.
In addition to her upper GI test, Nyana will also be undergoing a sweat test to check for cystic fibrosis, and gave up 2mL of blood today (requiring a needle/catheter instead of just a heel prick) to test for alpha 1 antitrypsin deficiency, a protein deficiency that can affect the liver and lungs. We’re nearly getting to a point where if Nyana isn’t outgrowing her BPD, we need to start exploring potential reasons why not. Nyana needs to be on high-flow for the GI study, and I expect we’ll revert to CPAP as soon as radiology is done with her.
It frustrates me to no end to see us moving backwards yet again. It’s frustrating to think that it’s our own dumb fault for trying to wean her O2 and introduce a bottle at the same time, and it’s frustrating to think that it was someone else’s idea to do so. I hate the idea that coming home with a g-tube is a real possibility (and Brienne, if you’re reading, I’d love to hear your thoughts on this) and I’m very slowly coming to terms with what I’ve known for a long time: that we’re not bringing home a healthy baby; we’re bringing home a baby who is finally healthy enough for us to take care of without professional help. We know she’ll get better eventually, and we can’t wait until they deem her well enough to let her get better at home. Even with big steps backward like today, we can’t be too far from the finish line now.