It’s absolutely insane to think that this chapter of our lives is winding down and that a new, uncertain—and kind of terrifying—one is about to start. We’re tying up our loose ends at the hospital and are starting to seriously discuss the logistics of bringing her home and what happens when she gets here. There’s a lot of training and a lot of learning for Don and me; a lot of forcing the nurses to step back as often as possible and let us do as much as we can, while still playing by hospital rules and within the confines of hospital protocols.
Life in Nyanaland these days is a lot of hurry up and wait, combined with a whole lot of holy crap, is this really happening this quickly? We have a ways to go yet—there is a three-page list taped to the door of our room, right beside our bluebird, of things that both Don and I must be 100% competent in before being allowed to walk out that front door; everything from programming her bipap and her feed pump to knowing how to clear her airway and how to reinsert her g-tube if (when) she yanks it out—but the finish line is quite literally right around the corner now, and the majority of the items on that three page list are quickly being changed from red to yellow to green dot stickers with each passing day.
A lot of things have happened in the past few days as Operation Bring Babygirl Home ramps into high gear.
- First attempt at the carseat challenge. Any baby who spends even a night in the NICU is required to participate in the carseat challenge before being given their walking papers. This is nothing more than an hour-long nap in the carseat with a full belly, hooked up to a pulse oximiter to prove that the oxygen saturations can be maintained while sitting for a prolonged time in a carseat, a posture entirely unnatural to a growing infant. Saturday afternoon Nyana took part in her on-bipap challenge—she’s required to do one each on her bipap machine and on her low-flow cannula—and failed about twenty minutes in, when she fell asleep. She just doesn’t have the neck muscles yet to fully support her head while she sleeps upright; she drooped and she desaturated, and so we’ll try again, next time with rolled towels supporting her head.
- One last eye exam. We wheeled Nyana down to ophthalmology on Friday afternoon to test her vision and tracking; she’d had a weak testing back in February and Dr. Awesome had ordered a follow-up at four months (corrected) to ensure she was on track. I sat in the patient chair with Nyana on my lap, one of our primary nurses and a random RT sitting on chairs across the room, all of us waiting about twenty minutes for the good doc to show. When she finally arrived, she shone some lights in Nyana’s eyes, then added some drops, and left for half an hour. When she came back, she shone some more lights in Ny’s eyes and then told me that her eyes look perfect and to follow up when she’s a year old. It’s astounding to think that 76 days of high oxygen requirements on a ventilator didn’t do serious damage to her eyes.
- Endless training. Don and I have joked for years that the government ought to find a way to sterilize everyone at birth and force us to pass a competence exam before being allowed to procreate (come talk to me after you’ve watched the movie Idiocracy). Two hundred days and counting in the NICU isn’t quite what we meant. Although I see the humour in the joke Mother Nature is playing on us now—Oh, you want to be tested before you get to be a parent? OK!—I never imagined that I’d get a seven-month long course in Parenting 101.
- Care By Parent.Further to the endless training, we not only need to learn how to do all of this, but we need to prove that we can do it by ourselves. A room has been booked for us on the 3rd floor of Children’s hospital, about as far away from the nursery as we can get, and we’ll spend at least 48 hours attending to her care completely on our own; we’ll eat, dream, sleep Nyana for an entire weekend as we prove that anything they can do, we can do better.
- Preparing our apartment for a baby and her gear. When we found out last April that we were pregnant, we took a quick glance around our overstuffed, 700 square foot, one bedroom apartment and said to each other, we can do this. A healthy baby takes up a lot of space, I’m told. We have everything a healthy baby needs and then some. We’re trying to find the time—between Don’s days at the office and my days at the hospital—to declutter our home and make room for bipap and food pumps and oxygen tanks and all the incidentals that come with such equipment. The bipap alone comes with 60 one-litre bottles of sterile water each month, used for the humidifier pot. Her g-tube supplies include boxes of syringes, gauze pads, tubes of sterile saline, feeding bags and more. Somewhere between now and the day we bring her home, we’ll also need to find a way to buy a new crib for her, as the pack ‘n’ play we had planned on using will not accommodate the wedge she needs to treat her GERD. I have no idea where half of this stuff is going to go, let alone the regular baby necessities.
I must have blinked somewhere along the way because all of a sudden we’re bringing home our big babygirl. She is four months corrected today, counted from her due date of December 17th, and on Wednesday she’ll be seven months actual. At her last weigh-in a week ago, she had broken the 13 pound mark by just a few ounces, and she’s behaving the way any typical four month baby should. She’s still walking the teething road, shoving her fists into her mouth at any and all opportunity, and on more than one occasion she’s let herself get so excited about her fist that she makes herself vomit as she gags on it. She’s also clued in that these fists of hers can grab things, like toys. She figured out months ago that her fists could grab tubes and wires and other things attached to her, but now she’s reaching outside of her own self and reaching at toys in her environment. It’s awesome to watch thought processes come together, to watch as she understands something new. We’re still waiting on that first elusive giggle, but she’s a smiley baby almost all the time, especially if someone is admiring her and complimenting her.
I never imagined I’d have to wait more than seven months to bring my child home from the hospital, but considering that this time six months ago, I doubted I’d ever bring Nyana home at all, we’ve certainly come a long way. We’ve outgrown this space here in South Six; we’ve overstayed our welcome and we’re ready to move along. I’d be lying if I said I wasn’t nervous about bringing her home, but I’m more than up for the challenge. The countdown is on.