We call her Princess Chub-chub of The Sunshine Brigade. We started calling her chub-chub back when she was reaching for three pounds, when the doctors were telling us that if only she’d grow, the lungs would follow. Well, she’s still our Chub-chub, now tipping the scales at a whopping 6lbs 3oz, and we’re still waiting for the lungs to follow her lead. I’m thinking perhaps we should start calling her Princess Puff-puff instead. Maybe then she’d pick up on this breathing thing.
The doctors and the RTs are stumped. No one in the NICU has seen a case of BPD this serious in years. Typically, I’m told, symptoms of disease present themselves, the baby is intubated for ten days or two weeks, and then everyone moves forward with little trouble. It’s not often that a baby in the NICU remains on the ventilator for as long as Nyana has due to poor lungs alone.
I had a cuddle with Nyana earlier this week and while we were sitting and singing together, one of the more senior RTs stopped by to visit with us, followed by a resident RT and then another. Before I knew it, Nyana and I were both listening, wide-eyed, as this group of respiratory therapists discussed her case and the options available to finally wean her off the vent. It was interesting to see the varying ideas from the varied levels of experience. The more senior RT is pushing for a more aggressive approach—lower the settings and force her to follow along—while the younger residents seemed to prefer a leisurely wait and see approach, where we wait for her to tell us to lower the vent settings. If there’s any confusion, I’m siding with the more senior’s aggressive approach. But that’s just me, and I’m not allowed to make decisions.
I called the hospital this morning to see how Miss Chub-chub did overnight. Our primary nurse Heidi is back from vacation and back to looking after Nyana, and had good news for me. Our O2 levels are down to 40%—back to where we were before Don and I got sick and her requirements shot up to the 70-80% range in our absence. In rounds this morning, the decision was made (thank you, aggressive RT) to reduce the respiratory rate from 45 breaths per minute to 40, and she appears to be tolerating it well. Sure, we need to run things on her time and let her tell us when she’s ready to move forward. There’s nothing wrong with giving her a gentle nudge every now and then, though.
Breathing issues aside, Nyana is a perfect little angel. She loves having her hair brushed, loves when Mum sings Barenaked Ladies songs to her, and loves when she gets to come out of her crib for a cuddle with Dad. She opens her eyes at the sound of our voices, looks absolutely delicious in her adorable outfits, and has mastered the art of soiling a fresh diaper before we can even finish fastening it. And as we learned yesterday, she doesn’t mind a bath every now and then, either.