I wish someone had told Nyana that there is no gold star awarded for spending more time in the NICU than she did in utero. Bright and early on Tuesday morning marked an interesting milestone: the day Nyana has finally spent more time in hospital than she spent in the womb. The day where I’ve now spent 27 weeks plus two days in the NICU; before that, I spent 27 weeks plus two days trying to enjoy my pregnancy.
If someone had been able to pull out the crystal ball back in September and lay out in perfect detail the road that Don and I would end up walking—the 67 days on the ventilator, and the six months in four different rooms, and the 200+ days we’d spend meeting an ungodly number of nurses—I would have scoffed in disbelief. So when a doctor pulled me aside in October and practically told me just that, plus the part where we’d be going home with oxygen and a g-tube, I did just that. Except, instead of disbelief, I scoffed in defiance.
And yet here we are, six months and counting into our “long stay” that the doctors warned us about when we first arrived, the long stay that I chose to poo-poo the notion of, and we’re scratching our heads at how we’re still here. I’ve used the words absurd and ridiculous to attempt to describe the duration of stay to someone who hasn’t endured it; it’s baffling in a humorous sort of way, how kids way smaller and sicker than Nyana were born after her—after her due date, even—and can be home by now. There are babies born in 2011 proudly displayed on the “I Was A Preemie, Too!” graduate wall. And we’re still hanging out in South Six, just waiting on those lungs of hers.
Don and I have laughed about our NICU adventure, we’ve cried about it, we’ve searched our histories to find anything karmically good or bad in our lives that warrants such a journey for the three of us. And all we’ve come up with is that this is what we got. This is the hand we were dealt, and this is what “normal” now means to us. We know this is a blessing, not a punishment, and we’ve come to the decision that Nyana chose us, knowing that her Mum and Dad would be strong enough to persevere where many other couples would crumble.
That’s not to say that Don and I—and the amazing relationship that we’ve been building for more than a decade—haven’t taken a beating along the way. By the time we get out of here we’ll have spent well more than two hundred days within these walls—two hundred days watching our Babygirl fight to breathe, two hundred days waiting to finally carry her through our front door and tell her she’s home. I don’t think anyone would be able to put their lives on hold for more than 200 days and not bear some scars at the end of it. Don and I are finding that conversations about Nyana and the hospital get tiresome; yet conversations about frivolous things like sports scores or new recipes seem unimportant. We’ve spent 191 days with Nyana on our minds, but not the way most parents find themselves preoccupied with their new bundles of joy. We’re living as a family divided, physically, and that’s beginning to translate into a couple divided, emotionally.
Neither of us are overly concerned about the silence between us these days, though. I recently heard a quote that says home is a person, not a place, and that day in Belize when we vowed those vows, I told Don that when I found him, I knew I was home. I knew that from that day forward, no matter what life threw at me, it was throwing at us, and that we, together, would fight and win. I don’t think it’s any coincidence that watching our daughter fight the biggest fight of her life has forced us to test our relationship more than our ten years ever has before. This must be the universe attempting to prepare us for Nyana’s teenage years.
Day #191 and homespeak is becoming an almost daily occurrence at the hospital. With the G-tube surgery out of the way and healing nicely, the nurses have taken yet another step out of my way, and as of Monday morning I’m fully responsible for all of the feeds that I’m present for; everything from warming the milk to setting the pump to flushing the G-tube line with sterile water before and after each feed. I’ve also been given the green light to draw up and administer her meds—two separate diuretics and a multivitamin—and I can remove and replace her bipap mask with no assistance (this one is pretty huge actually; even nurses and RTs need to call for another pair of hands sometimes).
Morning rounds are full of homespeak, too. The biggest order of the day in rounds this morning was for me to bring our stroller in to the hospital so that the “guys downstairs can retrofit it for her gear”. The cloth basket below the stroller will be replaced with a wooden shelf that can hold the weight of the bipap machine and its battery. Hooks and clasps will be added to the framing to hold up wires and keep tubing clear of the wheels and the germy ground. Princess Munch has spent 191 days inside and I don’t intend to keep her locked up much longer. Besides, Grannie bought her a Cadillac. The seawall calls.
As far as I understand—and this isn’t a protocol that’s written in stone but more of a guesstimation based on everyone’s conversations with me—we’re waiting on three things before we get our walking papers: 1)her home bipap machine, oxygen tanks, and feeding equipment has all been ordered and my training on it will begin with Nyana as soon as it arrives; 2)the RTs would like Nyana to be able to come off of the bipap for an hour at a time, and we’re currently coming off for half an hour, twice a day, and; 3) her temporary G-tube needs to be swapped out for a Mic-Key at 6-8 weeks, though there has been talk of this happening as an outpatient if she does better than expected.
For all the absurd and ridiculous we can find in 191 days and counting, there’s a whole bunch of insane disbelief that it’s almost over, too. This has become our new normal and the nurses and the NICU walls have become a safety net. It’s a strange sort of Stockholm Syndrome, almost, being nervous about leaving this place that’s held us captive for so long. The end of this chapter is near, and something new is on the horizon. Something sure to test Don and me again and remind us not to take our love for granted. Something sure to remind us just how awesome Nyana is, and how amazing she makes Don and me. May the next 191 days be better than the first.