It’s a dark and stormy night, and I may have just endured the worst 48 hours I’ve had in the NICU since the Intubation Era. After watching her slow slide backwards through the weekend, and after her tests and blood work yesterday, I wasn’t surprised to see RT Awesome at Nyana’s bedside when I arrived this morning, in her hands a long yellow tube attached to a machine I’ve never seen before. Our Princess is taking the bipap machine for a test drive. Even though I was expecting it, it still felt like a kick in the gut to see it. But let me back this up a bit. In addition to being a crappy 48 hours, it’s also been a busy 48 hours. I’m trying not to see a correlation between the two.
I got to the hospital just in time for Nyana’s upper GI exam Tuesday morning. When I walked into her room, she was wide eyed and excited to be in the transport bed, wondering what adventures were in store for her. She was all big smiles and happy coos, despite her very obvious indrawn breathing. Her mood changed as we wheeled her down the hallway towards radiology, and by the time we got into the exam room, she was well into a full-blown anxiety attack.
With five people on deck performing the exam, I declined the offer of a lead vest and stood back behind the safety glass, watching while someone (not me) comforted her, and someone else (not me) fed her a bottle. After getting an xray view of her swallowing, they used a syringe to deliver a sizable volume of barium into her stomach, and then used x-rays to confirm that her GI tract functions as it should. I listened to her scream nonstop—not because it hurt but because she was scared—for the entire exam, and by the time the hour was up, she’d puked up the barium they were unable to remove with the syringe, cried her eyes red and puffy, and wound herself up to about 33% oxygen. Because she needed to have an empty stomach for the exam, she’d been denied her 9am feed, and so we finally settled in for a snuggle and a snack, back in her room and dressed in a pretty new sleeper, at 11am. For the record, everyone on Nyana’s team is thrilled with the results of her GI exam.
We cuddled and sang and played for a few hours, until a tech showed up early in the afternoon to do her cystic fibrosis sweat test. After thoroughly cleaning Nyana’s arm with a multitude of different liquids, the tech soaked two pieces of gauze in a very cold liquid that made Nyana flinch when he applied them to the inside of her forearm. A pronged metal plate was placed atop each of the gauze patches and then affixed with a rubber tourniquet. A red and a black wire was clamped to the prongs on the metal plate, and then the tech turned on the juice. Nyana flinched slightly as the electric current started to flow, but relaxed and settled into it quickly. The egg timer went off after five minutes, and the tech began to undo her contraption. Phase I of the test was complete.
Phase II involved placing one gauze pad on Nyana’s arm, then wrapping her arm in saran wrap. Next, a rectangular panel of tape made of eight or ten strips stuck together, was wrapped around her arm. Another layer of saran wrap followed the tape, followed by a diaper, a warm washcloth, and a final layer of saran wrap. Nyana was then wrapped in a receiving blanket and a regular blanket, and covered with a warm towel, with a wool cap pulled over her head.
I was instructed to sit there with her on my lap, bundled up like snowmageddon was coming, for half an hour. The tech was most pleased with the dripping gauze pad he peeled off her arm when he came to wake us both up after the test was over. This sweaty gauze pad will be sent off to test the salinity of Nyana’s sweat. We won’t have the results of her CF test for a few days, but seeing as she’s been tested twice in her newborn screens, we’re (mostly) not concerned.
The rest of Tuesday was fairly uneventful, and despite a blood gas that had less than favourable CO2 levels, we decided to give her the night to let the 8L flow fully take effect, and see if her levels were better in the morning. It turns out—as evidenced by the aforementioned yellow tube attached to a machine I’ve never seen—her CO2 levels weren’t any better Wednesday morning, and so we were graduated to bipap.
I need to be clear that the bipap she is on now is not the same as the biphasic she was on in December and January. While the concept is the same in both—use a tight seal to deliver a perfectly balanced mix of oxygen and pressure—the biphasic system is what the RT du jour described as “poor man’s bipap”. Bipap is capable of delivering either CPAP (single pressure) support, or biphasic (dual pressure), much more precisely and allowing much more accurate care. Trouble is, it’s not meant to be used on 11 week old babies, and as such, the smallest mask they have is barely small enough to form a seal around Nyana’s nose.
What’s worse than it not fitting well, is that she hates it. Hates. It. She turned into a purple, squirmy siren the minute it was affixed to her face, and for the first hour while I tried to calm her with cuddles in the glider, we’d go in waves between extreme tantrum, and passed out on my shoulder. In her tantrum phases she’d use those awesome neck muscles she developed during tummy time to pitch her face sideways into my shoulder in an attempt to remove the mask. Her little arms would flail and punch me in the neck, or in the face if she could reach, and when she wasn’t flailing she was tugging at her new tube. She cried, I cried, and I began to wonder—though I knew there was no other option—what the value was of making her so uncomfortable, she was wailing and flailing her sats into the 60s.
As I tried to settle her in the rocking chair, I could feel myself getting more and more frustrated as she got more and more agitated. I knew she could sense my stress and that was making it even worse for her, so I passed her off to Nurse Peachy and took a chair in the corner of the room. By this point there were eight or nine people in the room, not counting Ny and I; a mix of RTs and nurses, mostly, with one doctor and one OT. I sat and watched as the RTs attended to her mask, fiddling with her oxygen settings and tightening the head straps. I listened to Nyana continue to cry while I watched the nurse administer a mild sedative to take the edge off, and then proceed to comfort her with her soother and a gentle stroke of the head. And then, with all this activity swirling around me, the doctor and the OT were beside me. “We hear you want to know more about a g-tube.”
Are you kidding me? At this very moment, no, actually, I don’t want to know about a g-tube. But let’s have this conversation anyways. We had a heated discussion—probably more heated than it needed to be thanks to my heightened emotional state—about the pros vs. the cons of the surgery, about why Don and I are reluctant to consent, and what all three of us would get out of it, long term, from both a digestive and a respiratory perspective. Even though I think everyone in the room at that moment knew that when Nyana leaves BC Women’s, she’ll have a g-tube, we agreed do drop the subject and discuss it again in a few days. Nyana looked comfortable perched on her nurse’s shoulder, and I was too frazzled to trust that I could maintain that peace she’d finally found. I packed my bag and headed home for an early afternoon, with plans to meet Don at the hospital when he got off work.
I got back to Nyana’s room about a half hour before Don got there, and was met with yet another kick in the gut. The CPAP settings I’d seen on her bipap machine when I left earlier this afternoon, were now reading dual pressures. She’s being given the equivalent of biphasic support, something we’ve not needed since Christmas. Even worse, the pressure settings are at 10/7. Biphasic 10/7 is exactly the support she was on in the early days of her extubation. I know there are differences and it’s not a tit-for-tat situation, but it’s hard not to feel like we just took a three month step backwards.
The plan, I’ve been told, is to keep Nyana on this high-pressure support overnight, or for a few nights, to allow her to rebuild the reserve energy in the lower alveoli that don’t get fully oxygenated when she’s working hard. Once we’ve given her a few days to catch her breath, we may be able to go back to high-flow, or explore options of splitting her work of breathing between bipap, high-flow, and flying solo. That said, we all know that plans aren’t worth the paper they’re written on in the NICU. Who knows what tomorrow’s plan will be.
I do know that I have definitely shifted gears from “make her better” to “bring her home”. I know that we can finish making her better from the comfort of our home. I know that her discharge date is so within reach now; another, six, eight weeks at most. And I know that decisions Don and I make now about her care moving forward could add or remove weeks from our release date. Now, more than ever before, I need to tap into that patience I’ve been working on all these months, and make sure we make all the right decisions as we move forward. We may not have won all the battles in the NICU, but we’re gonna win this war.