I woke up this morning and saw my husband’s Facebook status: “Don loves Two Steps Forward, but wants to punch One Step Back in the throat.” I couldn’t echo that sentiment more.
It’s been a rough 24 hours in Nyanaland. I made it to her bedside in time for rounds yesterday, and the doctors were still concerned about the condition of her lungs and the blood gas levels she’s maintaining. The decision was made to change her ventilation from the conventional ventilator to an oscillating ventilator. The oscillator, I was told, is a less-damaging method of feeding the lungs oxygen, as instead of forcing the lung open and closed, open and closed, it forces the lungs open and holds them there, and then uses vibration to absorb the oxygen into them.
The machine looked like something you’d find in a Dharma station, and I’m not entirely convinced that everyone on the unit was sure of how to use it. But the respiratory therapists connected her and turned it on, and within minutes my three-pound baby was vibrating, quite unhappily, in her solarium. As you can imagine, a tube down one’s throat, vibrating continuously, is not a pleasant experience. As I said my goodbyes to her for the afternoon, I was warned that sedation was likely. I asked them to please contact me at home prior to feeding her narcotics and with a heavy heart, headed home to pretend to have a productive afternoon.
When Don and I made our way back later in the evening, I was dismayed to see her in her solarium. Despite my earlier request to be informed prior to drugging her, there she was, passed out on her stomach in a morphine-induced coma. Her evening nurse told us that she was borderline, and barely holding on. Her oxygen requirements were at 100% and she was satting in the 80s, but her CO2 levels had improved with the oscillator, and the RTs were happy with what they were seeing.
I, on the other hand, was heartbroken. Nothing about the oscillator looked like it was doing what it was supposed to be doing. For the past three weeks we’ve been watching her O2 requirements in the 70s, and wishing them down towards 40 percent. Her saturation levels should be in the mid-90s.
And then the nurse slapped a “look, but don’t touch” sticker on our baby. We’d just spent 45 minutes on two buses in the pouring rain, and you’re telling us I can’t even stroke her head? Can’t even talk to her? No parent should ever have to deal with that. Deflated, Don and I abandoned our plans to decorate her stall and solarium for Hallowe’en, had a quick visit, and sombrely, silently, made our way home.
We learned early this morning what it feels like as a parent to hear the phone ring you awake from a deep sleep. It was just before the 7am shift change when the resident doctor called. Nyana had struggled through the night, so they’d changed their mind on the oscillator and put her back on the conventional vent. The phone call was more of a courtesy to me—I suppose word had gotten out that I was most displeased about medicating my baby without informing me—and and the doctor wanted to make sure I was aware that Nyana had been given a paralytic on top of morphine this morning, to ensure she didn’t pull the breathing tube out.
I was so relieved to walk into the NICU this morning and see my babygirl the way she should be—calm and peaceful on her back, without the oscillator from hell jiggling her tiny body about. All her stats look a bit higher than I’d like to see them, but still within normal range for her. I caught the eye of the doctor after morning rounds were over and she pulled me aside. I was happy to get some face time with the doc; I didn’t know she was about to burst every bubble we’ve been holding on to.
She showed me two x-rays of Nyana’s lungs; one taken the day she was born, the other immediately after being put on the oscillator yesterday. Until now, I had been under the impression that she’d been born with terrible lungs and we were working to strengthen them. Apparently, the lungs she was born with were great—if only a bit premature—and they’ve been deteriorating over time. I’ve been told that they’re currently at the worst they’ll likely get, and we’re just trying to avoid damaging them further now as they strengthen and grow. This was tough to hear, but wait, there’s more.
Nyana will not be home for Christmas. It was all I could do not to break down and cry when she told me we’d be spending our first Christmas as a family in the NICU. I’m welling up just thinking about it as I type. Don and I have been holding on to this side of “her due date, plus or minus two weeks” since the day she was born. To think that we’re looking at mid- to late-January, well, there’s no poetic way to phrase it. It just plain sucks. Then the doctor confirmed what I guess I already knew: she’ll most likely be discharged on home oxygen. And then she threw me something that hadn’t even been on my radar at all. Because of the lengthy intubation, Nyana will likely have an oral aversion, and teaching her to feed will be difficult. Trying to feed her orally will only cause more negative associations with the mouth, so we’ll probably be looking at a G-tube—a feeding tube inserted surgically through the abdomen—for the first few months while we recondition her to believe that not everything going into the mouth is a painful and bad thing.
I think I’m in a state of shock. Perhaps this is my “ignorance is bliss” attitude finally catching up with me, or maybe this is just our first real “one step back”. I need to remind myself that in the grand scheme of things, she’s not as sick as other babies on the unit. It’s only her lungs, and not her heart or her brain or her guts. We’re looking at a setback that will heal over time, and there will be no outwardly visible repercussions by the time she’s playing in the schoolyard with her peers.
So we wait. Wait for her to grow, wait for her to get stronger, wait for a miracle. As my Facebook status says this morning, “Karen is not an overly religious person, but Nyana could sure use some prayers for healthy lungs from those of you who are.”