It’s been two weeks since we underwent Operation Bring Babygirl Home Again; two weeks since we reluctantly agreed to let Mr Button take a bride, and we welcomed Mrs J-Tube to the Brigade. There was a time in the not-too-distant past when Don and I had hoped that by Nyana’s first birthday we’d be slowly saying goodbye to Nyana’s tackle instead of adding to it—but then again, there was once a time when we believed that if we could just survive three months in the NICU, we’d bring home a healthy, tackle-free baby on or near her due date. But as we’ve learned before, what is best for Nyana and what we want are two totally different things, and what’s best for Nyana, according to her medical team, is a feeding tube into her intestine.
As you might imagine, a feeding tube into the intestine comes with a few surprises.
- Continuous feeds. This one isn’t too surprising; we knew that the jejunum couldn’t handle a large volume of food all at once like the stomach can, and that bolus feeds were off the table for a while. Mr Foodpump is taking up residence in the slow lane these days, leisurely pumping out formula at a rate of 48 millilitres per hour, eighteen hours a day. That’s slower than a millilitre per minute (for the visual learners and the non-metric, one teaspoon is 5mL), and it means Nyana is being fed (and by “being fed” I do mean “attached by a four-foot tether to a feeding pump”) all but six hours of every day.
- Free formula. Probably the only upside to the whole who needs this stomach, anyways thing—and not a necessarily a direct result of the addition of the J-tube so much as it is just what happens next—is having Nyana’s expensive formula paid for courtesy of Tommy Douglas and Canada’s universal health care. Now that Nyana is at an age where she should be nearly exclusively fed solids, the fact that she’s still dependent on liquid calories—and concentrated calories, at that—means that her formula is now considered a medical supply, and has been added to my monthly order list, alongside her syringes and bile bags and Coban tape.
- Bile bags. Yes, that’s what I said, and yes, it’s exactly what it sounds like. While we use the J-port of the button to get formula into her intestine, we simultaneously use the G-port of the button to drain and vent the contents of her stomach. Because the exit from the stomach into the jejunum is blocked by the j-tube, we need to provide an alternate route for the bile and saliva and air to escape, and better out than up I say, especially when we’re fearing aspiration into the lungs. We ‘vent’ the air out of her stomach while she is awake by positioning the bag above her stomach (in our case, safety pinned to her shirt between her shoulder blades), and we ‘drain’ the bile and saliva when she is asleep by positioning the bag below her (Velcro strapped to the foot of her crib). With every break in her feeds, we drain and rinse the bag in the kitchen; if by chance the bag contains more than 50mL (a quarter of a cup), we have instructions to load the contents into Mr Foodpump and refeed them to Nyana. Tell me you’re not shaking your head in disbelief.
- Orders not to let her vomit. Not as easy as it sounds, trust me. Everything that we do, we do with the intention of increasing the health and function of Nyana’s lungs. The worst thing that could happen would be for her to aspirate, the easiest way to aspirate is to vomit, and so the feeding tube was advanced to eliminate the risk of vomiting by removing the food from the stomach. As we were discharged from the PICU with our new j-tube, Dr Dee reminded us that if we see Nyana even looking like she’s about to gag, we need to grab a 60mL syringe and fast-as-lightening draw the contents of her stomach through the g-tube port. Sure, we said. We’ll do that. Seeing as we’re feeding into her intestine instead of her stomach, though, that’s unlikely to happen.
- Gagging and choking and puking. This is entirely unexpected and almost worrisome to us now; since we brought Nyana home with Mrs J-tube, she’s been having near-daily bouts of vomiting. I use the word “vomit” loosely as there is nothing in her stomach to vomit; she simply retches and gags and turns purple and desats. These episodes last a few minutes each time as she chokes up a few mouthfuls of saliva and bile, then she recovers on her own and moves on as if nothing ever happened. I assume this is somehow related to our venting and draining set-up—that air is building up in her stomach unable to properly vent—but until we hear back from her medical team, Don and I are left wondering how on earth a procedure meant to eliminate bouts of reflux seems to have perpetuated them.
So there you have it. We’re adjusting to our new tackle but it’s not without its challenges. I’m reminded yet again that modern medicine is as much trial and error as it is science, and that there is no magic cure-all, especially when the lungs are concerned. We’re back to see Dr Dee in two weeks for a follow-up, and hopefully between the J-tube and the increased pressures and the overnight oxygen we’ve added to Nyana’s care, we’ll finally hear some good news about healing and moving forward.