suck-swallow-breathe

The way Kraemer put it, this morning we were preparing for the “big game.”

In November, while Calder was still in the NICU, his medical team conducted a modified barium swallow study to ensure his suck-swallow-breathe reflex was functioning properly. As we found out then, he was silently aspirating (taking liquid down his windpipe without even the smallest cough), and this was a big problem, particularly given the state of his lungs. Too much liquid in there could easily evolve into pneumonia, which would unquestionably land him back in the hospital. We were given two options: (1) leave Calder in the NICU for about another 30 days, where the nurses and therapists would continue to work with him on his feeding, and test him again at the end of that month, or, (2) perform surgery to insert a G-tube and bring him home, with a swallow study scheduled two months out. We were encouraged (it didn't take much) by many of the nurses to go home, for a number of reasons. After electing this route, the doctors readjusted their estimate from two months til the swallow study to three, and at discharge, the therapist suggested a minimum of four months, perhaps as many as six.

The estimate kept moving out, and the second swallow study, the one that could potentially allow us to start working with him on his feeding again, seemed elusive. But once home, we were convinced we were seeing improvements in Calder’s ability to swallow. It may not sound pretty, but when he’d spit up, we would see him cough. That had to be a good sign, right? Corinne, a speech and language pathologist (SLP) herself, felt the NICU docs had been very conservative in their recommended time frame. This didn't surprise me as conservative seems to be Fairfax's MO (and I love them, I do, and conservative got Calder to where he is today!) We consulted further with the docs we see now that might have something to say about it, specifically our pulm, ped and GI doc, and wound up getting an order written in mid-January that would let us schedule it anytime.

We opted for today. Approximately 2.5 months since his last study.

There was a technician, a resident, an SLP and a radiologist in the room. The SLP explained that if he failed this study, they would not conduct another one for SIX MONTHS. Yipes. The technician had me seat him on a huge booster seat on an enormous x-ray machine. In fact, it was more like a booster seat on top of a booster seat on top of a booster seat; Calder was surely one of their smaller patients! I wish I had had enough hands at the time and presence of mind to take a photo. The SLP explained the straightforward procedure: she would feed him a little bit of the barium solution using one of their slowest nipples, pacing him as she went, which means she would only allow him a set number of sucks before forcing him to take a break by tipping it out of his mouth. Then she would hand it over to me.

Everyone stared at the screen to watch Calder’s documented attempt to suck, swallow and breathe. Being completely unschooled in what this reflex is supposed to look like, Kraemer and I were mesmerized but clueless as we stared at the dark stream shooting rhythmically across the screen with Calder’s every swallow. There was liquid, he was sucking, he was swallowing … but was it going down the right pipe? I strained in vein to see whether the fluid was flowing only where it was supposed to and whether the faces in the room betrayed an answer. Kraemer and I glanced at one another across Calder’s booster seat.

The SLP flipped the switch off. She said Calder did well. His reflex looked good. Did we have a speech therapist yet? And just like that, we were in business. They had seen no aspirating. Our first appointment is next week.

Our day at the hospital wasn't over, though. Next stop, GI for a new button. At Fairfax, we had been told we only needed to come to the hospital to change the button if it popped out by accident within the first six weeks. After that, they said, we could change it ourselves. Children’s National Medical Center has a slightly different policy, new in the last three years, which extends the time frame from six weeks to three months, and also requires us to have the tummy x-rayed for placement after the switch.

Sooooo, next stop, radiology. Again. This time didn't go nearly as smoothly. GI told us we were set, that we could basically waltz in. But after an hour-and-a-half wait (with a baby who had not eaten for nearly seven hours) and some rude staff at the radiology front desk, we called it quits. We checked the placement ourselves by venting him (attaching his tube to see whether any milk or, in this case, barium solution, came out – it did.) We left. And to be fair to Calder, he wasn't even the crankiest or hungriest at this point.

All in all, though, successful day. We’re excited to move on to some bottle feeding. We’ll know the plan next week.