191 days in utero. 167 days (and counting) in the NICU. More than 500 different medical professionals. Five different forms of respiratory support. Four different rooms. Three blood transfusions. Two courses of Dex steroids. One awesome primary nurse. Zero surgeries.
After much resistance and much discussion, Don and I have decided to consent to Nyana’s g-tube surgery. We still have a few questions to ask, but we’ll say yes on Monday and I expect that the procedure will go ahead within the next week or two. I’ve already had a brief consult with the surgeon to answer any superficial questions I had right off the bat, and we’ll sit down in a few days to go over the important details like healing time and home care. I know in my heart that we’re making the right decision, and that makes it easier to ignore the feelings of defeat, and makes the decision that much easier to accept.
It was October 27th—she was barely five weeks old, or 32 weeks gestation, if you prefer—when one of the doctors pulled me aside and told me that when Nyana finally goes home, she’ll have a backpack full of oxygen and a feeding tube in her abdomen. I scoffed, and Nyana’s Army rallied, and we all wholly believed that we’d prove them wrong. As the months wore on and I came to fully understand her lung disease, I conceded and allowed myself to be OK with her coming home on oxygen support, as long as we won the g-tube war. I fought that much harder to be sure Nyana didn’t have an oral aversion—I created a soother dependency for her and gave her a ton of positive reinforcement around the face—and I was confident that we’d escape our seven or eight month ordeal without any physical scars.
And as hard as Don and I fought to be sure she’d be able to take a bottle, Nyana fought twice as hard to do it for us. The first time she tried to drink from a bottle, she was given two 10mL bottles over the course of 48 hours, and two days later her lungs gave out and she found herself back on CPAP. The second time we tried, more than a month later, we managed a full five days of 2 x 20mL bottles per day, but still, ended with severe chest indrawing and a graduation to bipap support. The simple suck-swallow-breathe instinct that all babies are born with is physically exhausting for Nyana, and as long as her respiratory needs are as great as they are, we can’t afford to waste calories trying to eat when there’s breathing to be done.
We knew we’d come to this point eventually, where we’d be forced to make a choice between eating and breathing. The strange thing is that we’d been told for so long that she very likely wouldn’t take a bottle, it never even occurred to us to think that we’d find ourselves facing the reality that she just couldn’t take a bottle.
The procedure itself is a simple laparoscopic surgery. Two small incisions, about a centimetre each, are made in the abdomen. The stomach is raised to connect with the skin and sutured in place, before a small balloon and tube is inserted connecting the two. A few stitches internally and a plastic cap on the exterior, and we’re good to go. I’m told the whole thing takes less than half an hour, and that risk of infection is the greatest complication.
To be honest, the only part of the whole procedure I’m hesitant about is the anaesthetic. A surgery like this requires general anaesthetic; general anaesthetic on a babe who can’t breathe requires intubation. After 67 days fighting to get off of that ventilator, intubation—even for only half an hour and even for only the best intentions—scares the crap out of me. I know that if they intubate her, even for an hour or two, her work of breathing will take a step backward; I have to trust that it will be a small, recoverable step backward, and that in exchange for making meals and weight-gaining easier, it will be a worthwhile step backward.
I’ve spent the past week or so accepting that the doctor back in October was right, but that it’s not for a lack of trying on our part. She will be going home on oxygen, and she will be going home with a g-tube, but she will be going home sooner than later. Consenting to the surgery means that once she’s healed, it’s only her lungs keeping us in the hospital. Knowing that we’ll likely be discharged on bipap support, we know that our decision to proceed with the tube surgery will likely shave a month or more from our NICU experience. Theoretically, we could be looking at discharge to home care as little as six weeks post-op.
For the longest time we’ve been talking about “the end of April” as a speculative release date, and knowing that she can come home on bipap, it’s hard not to get too far ahead of ourselves now. I keep thinking back to a month ago when we took Nyana off of her CPAP and she breathed on her own for more than two hours. Understanding now how pressure dependent Nyana is, and understanding now how easily we can use the bipap to recharge the alveoli when they start to run out of oxygen, it’s easy to get excited about being very near being able to take her off of respiratory support for hours on end.
Ultimately, the decision to consent to the g-tube surgery is bittersweet. We know that by not forcing her to feed orally, we can choose breathing over eating, and let her tell us when she’s ready to feed. Choosing breathing over eating means that we can learn to breathe—and eat—at home, instead of in a hospital room, and without any nurses. And the idea of being at home within the next six or eight or ten weeks is pretty amazing.