Mister Bluebird on my shoulder, it’s the truth! It’s actual! Everything is satisfactual!
It’s a dreamy sort of whirlwind in Nyanaland these days. A whimsical sort of world—as whimsical as over-sterilized and institutionalized can feel—where I feel like I’m walking on clouds with every step, and every word out of nurses’ mouths sounds like music to my ears. As Don mentioned yesterday, we have a date. A date that’s close. A date that’s touchable.
I was handed a piece of paper yesterday outlining the equipment that has been ordered for Nyana’s homecare, and that was when I got my first glance at those three little words that spell freedom for us, just a small little box on a form that said Target Release Date, a box that was filled in. We have been forging full steam ahead since Monday morning, Nyana’s room quite literally a flurry of activity as I sit, stunned, watching as the months of waiting suddenly become mere weeks.
I brought Nyana’s Cadillac ride up to the hospital on Monday morning—despite my reluctance to board a transit bus with an empty stroller—to let the team have their way with retrofitting it for her gear. As it turns out, the worst we need to do to pimp her ride is affix a fitted piece of plastic to the bottom of the basket to form a solid base. The rest of the Nyana’s awesome ride is already set up brilliantly for an oxygen tank, a food pump, and a bipap machine. There’s no room for a diaper bag or groceries, but that’s OK. Grannie didn’t spend all that money on a buggy to cart my groceries home in.
We reviewed Nyana’s schedule for convenience at home and have only needed to adjust her diuretics to something more home-friendly than 3am/3pm. In a move to make pump-feeding easier on us at home, we’ve started a transition to continuous feeds through the night, with bolus feeds during the day. This means that from 9pm to 8:30am, the pump will run continuously, delivering a measly two tablespoons per hour directly into her g-tube while she sleeps; during the day she’ll still get four big meals, 100mL each delivered over 60 minutes. This plan allows us pack her full of calories during her restful times (when the risk of spitting up is less), and leaves her with much more awake time where’s she’s not feeding, time she can focus on more important things like growing and playing and breathing. The advantage for me and Don, of course, is that we’re not up at midnight to start the feed, and then again at 1:30 to stop and clean it, and again every three hours through the night.
Morning rounds have shifted from being about her care in the NICU to her care at home. Doctors are a formality now as the discharge planners and the bedside nurses take the reins to guide us towards the finish line. As we transition from being secondary in her care to having nurses on standby when needed, Nyana’s case is being presented to “the board” on Wednesday to apply for funding for homecare nurses and respite. We’re applying for the maximum 56 hours per week—one eight hour shift every day of the week—and it’s our prerogative to use any or all of the hours granted. Knowing Don and me, we’ll likely start with no help and quickly work ourselves up to a comfortable level. I’m really not keen on the idea of nurses in my home, but if Nyana needs nursing care, I’ll take it at home as opposed to in the NICU. Referrals have been made to Infant Development programs and physiotherapists in the community, as well as occupational therapists, pediatricians, ophthalmologists, dietitians. I’m fairly certain Don and I will be offered a referral to a therapist as well if we want, for us to work through any cracks the NICU beating may have left in our armour.
We’re well on the fast track out the door now, but something is missing. For all of our discussion and push for the finish line, we can’t leave without a bluebird. A bluebird means that discharge is imminent, that plans are in the works to let your baby go home. I’ve watched friend after friend, family after family, celebrate their bluebirds and take their babes home. Today, finally, day 205, they gave us a bluebird in morning rounds. I could have cried. A week shy of seven months and we finally got our bluebird. Our vote of confidence from the hospital that our babe is healthy enough to survive in the outside world, without doctors and nurses and RTs. Proof that Don and I are amazing parents and that Nyana has reached a point where she needs to be at home to continue thriving. We’re bringing Babygirl home.
Nurse Awesome was on days today—her last full set with us before she goes casual in preparation for a move out of the city. It was so fantastic to have her on Bluebird Day, to have her with us on a day that has been nearly seven months in the making. Moving forward on the prep for home, we decided to remove three of the wires attached to Nyana, and the leads attached to her chest that monitor heart rate, respiratory rate, and pulse were permanently removed. She still has a sat probe, technically called a pulse oximeter to monitor her sats, but once we balance her feed schedule we’ll remove this wire too and Don and I will be trusted to trust her colour and work of breathing alone.
So Nurse Awesome and I took Nyana for her first walk ever today in her stroller—down that long yellow hallway, to the coffee shop and out the door to the outside—and it was such a relief to see how she loved it. By “loved it” I mean that she didn’t hate it, so that’s a huge start. We walked out the door and up to the parking lot before we decided to turn around, just in case. Tomorrow night when Dad is back from his sick leave we’ll all go on a trek together, and we’ll call today just a trial run for the big deal. And then one day soon, Babygirl comes home for good.