not so fast

long day for all parties

Just when we thought we would be bringing our baby home -- miraculously without serious complications -- we were again reminded that this is a long road we travel.

Calder had been making very steady progress in the feeding arena. Just yesterday they'd increased the amount of his p.o. feeds from 20 ccs to 30, increased the frequency of the p.o. feeds from every other feed to every feed (so every 6 hours to every 3 hours), increased the total amount received to 65 ccs, and decreased the time over which he received the food through his tube to 30 minutes from 60.

He had adjusted to these changes fairly well, although taking a bottle at every feed had definitely tired him out.

To ensure he was doing as well as he seemed, and because his homecoming seemed to be closing in, they decided to conduct a swallow test. This is accomplished by mixing barium with his formula so that it shows up on an X-ray video as he drinks it, making it possible for them to tell where the liquid is going. When I called today to find out when to restart bringing in my now non-dairy breast milk, the test results were only a secondary question in my mind. Turns out it's a bigger deal than I was prepared for.

The results showed that Calder was silently aspirating after only 3 ccs of formula. This means that he is aspirating -- sending his food "down the wrong tube" -- without demonstrating any of the signs that would be expected to present themselves when aspiration occurs, like coughing, choking, spitting up, etc. The fact that it showed up this particular time does not prove that he's been doing it every time he feeds, but chances are high, and the risk is too high to continue trying to feed him by bottle. Aspirating milk / formula into his lungs could set him back significantly, especially given the risk of contracting pneumonia. 

The doctor told us that this brings us to a crossroads sooner than we'd expected. We have a choice. We can either elect surgery to insert a g-tube directly into his stomach, an operation that is a risk itself, as is any surgery, but also means he would need to be intubated, at least briefly, and how quickly we could get him extubated again isn't predictable. Or we can choose to leave him in the NICU for at least another four weeks, being fed through the tube through his nose, until they are willing to try feeding him again by bottle. Though in the latter case, it's not a certainty that he'd no longer be aspirating by that point anyhow, meaning he'd wind up with a g-tube even then. 

The more disconcerting part for me, however, is that the doctor then recommended an MRI. They offer an MRI prior to discharge, and when we'd questioned another doc about it over the weekend, the message was that because there isn't much to be done based on the results, he wouldn't recommend it for us. However, this was before we knew Calder was aspirating. His aspirating shows that he is not protecting his airways, which could indicate neurological abnormalities, and this, taken with other signs, has given them cause for concern. The other signs had previously seemed no big deal to them, or so we thought. I'd asked at least four nurses about the fact that he rolls his eyes up in his head sometimes; I was told he was still gaining control over his eyes, and was also probably tired. His stiffness was attributed to the length of time he'd spent on his back, intubated. His [very occasional] spasms were seen as quite normal. Now, however, they could all point to a problem with the brain that is quite a bit more serious than expected. 

Kraemer and I must decide on both the surgery vs more time in the NICU and whether we want results from an MRI. We still have lots of questions and are scheduled to meet with the doctor today to discuss further. If we choose to operate, Calder may be home as soon as November 18 -- what a birthday present that would be! :)

one of my favorite looks:
the "interested" face