Didn’t Know What We Were Missing

It’s been one hell of a bumpy ride, but here we are. One year old. One whole year since our lives were turned upside down. I had all intentions of writing about Nyana’s first birthday in a timely manner, of capturing all the emotions of a very special day immediately, while the feelings were so fresh I could still feel them. I had every intention of this, yes, but then I also had an expectation that her first birthday was going to be a hugely emotional affair. I spent the days and weeks leading up to Nyana’s first birthday playing the this time last year… game with myself, preparing myself to relive the emotions and the uncertainty of last September all over again. So I was pleasantly surprised when her birthday came and went last week with nothing but happiness and excitement about what was in store for Season Two. There’s a part of me that is regretting not writing that post in a timely manner, but Nyana did a good job telling the story in pictures, and I’d likely have just rambled on about how awesome Nyana is despite the year she’s put us through. Besides, the boat has sailed on that post now, as there are bigger and better stories to tell.

I made a phone call last night I’d hoped to never have to make again. When the voice on the other end picked up the line, I heard myself speaking those words I’d all but forgotten I knew: Hi, it’s Nyana’s mum. May I speak to her nurse, please?

Nyana has been having difficulty tolerating her feeds at home for the past week or so—vomiting with every oral feed and with about a quarter of her bolus feeds. Her temperature was within normal range and her temperament was unchanged, so Don and I knew that she wasn’t sick per se, but that something just wasn’t right. So after a few days of playing phone tag with Dr Dee, we finally brought her in to be checked out by her respirology team. Again she was assessed for her work of breathing and again she was sent for a chest x-ray; when the images came back we were again told what we were told two weeks ago—that she is doing okay, but that she could be doing much better. Considering the close relationship between lungs and stomach, I was reminded again that the key to increasing lung function is to adjust Ny’s feeding plan. And as with previous meetings with Dr Dee, we again had the J-tube conversation.

Like the decision to have the G-tube inserted, our decision to consent to the J-tube was not without much resistance. Feeding into the intestine instead of the stomach brings with it a list of inconveniences and drawbacks, the most concerning to me being continuous feeds—being tied to a feedbag eighteen hours a day. But it also has benefits, of course—not the least of which is healthier lungs, sooner than later. Ultimately, it was an easy decision to make despite our resistance; her health comes above any comfort or convenience for her dad and me.

She was admitted to the paediatric ICU on Wednesday afternoon, and was in and out of radiology in about fifteen minutes on Thursday morning, her g-tube button simply swapped out for a different model. She’s now sporting a G-GJ tube—a MIC-key button divided into two ports: the G-tube feeding into the stomach like she’s always had, and a longer J-tube that has been advanced into the jejunum. By all accounts it is a painless procedure—though you wouldn’t know that to listen to Nyana’s earsplitting screams through the big red door of the radiology lab—and with no sedative required, a simple video xray was used to guide the longer feeding tube into place.

We’re keeping Nyana in the PICU for a few days, to give Don and me a head start on the new learning curve of continuous feeds and vented tubes and bile bags; to give Nyana’s medical team a new baseline of what her “normal” is. It’s been two nights now without her, and our house is empty and lonely. Two nights of not waking to change her feed at five o’clock in the morning. Two nights of not going through the puffers, meds, BiPAP bedtime routine. Two nights of her nursery not providing the ambient white noise of humming machines and oxygen compressors. The silence of her absence is deafening.

People used to ask us all the time how we did it. How could we leave her there in the hospital and come home without her? How were we able to forge through, day after day, week after week, month after month? Let me tell you, leaving her in the PICU for two nights has been far more difficult than any of the 222 nights in the NICU. In the NICU, we didn’t know what we were missing. We didn’t know what it was like to have her right here. We didn’t know that we’d find comfort in the whirr of her foodpump in the middle of the night, of the Darth Vaderesque breaths of the oxygen compressor. If you’ve never felt full, you don’t realize that you’re empty. And our tiny overcrowded apartment that we’ve more than outgrown feels beyond empty without our little Princess Chubb.

And so I sit today beside her cot in the PICU, watching her sleep amid the plethora of wires and tubes we thought we’d said goodbye to, surrounded by the deafening beeping of machines I forgot I hated so much. Of course we knew we’d end up here eventually for one reason or another—and the part of me that comprehends logic knows that it’s better to be here for preventative measures now than to be here in the dead of winter when a common cold has turned to pneumonia—but I hate that my only escape from the beeping of the PICU is the silence of an empty apartment, and vice versa. I hate being at the mercy of doctors and nurses and hospital rules again. And more than anything, I hate the reminder that sometimes steps backwards are necessary to get the proper footing to again take steps forward.