Shortly after Gus was born, they put a feeding tube in and took a series of images to assess what they had to do to fix him.
Most of the time, the lower end fuses to the trachea, but stays pretty close to the upper end. In this case it can be treated with surgery when the baby is a few weeks old. In more rare instances, the lower end doesn't fuse to anything so you have a gap between the two ends. That's the kind Gus had. To make matters worse, the gap was fairly substantial.
The alternatives when you have a defect like this range from bad to worse to awful. Fortunately, Gus's surgeon, the great Dr. Coln, performed a very tricky procedure to speed up the time it would take to force the two ends to grow together. Once they were close enough, after about two months in the hospital, he was able to attach the ends, thus giving Gus a clear path to swallow food, once everything healed up. In the meantime, he was eating through his feeding tube, which was swapped out for a button at some point.
Things were going pretty well and everything was moving in the right direction until Gus got an infection in his IV. It wasn't a super serious infection, but it wasn't one you want to mess around with either. They dropped the antibiotic equivalent of an H-bomb on the infection and it went away after a few days. But because of this, his whole digestive system went haywire. He became super-sensitive and anything but the most expensive hypoallergenic formula would come rushing out the back-side almost immediately.
Gus's mom, the diligent and dedicated Sherry, had been pumping breast milk this whole time. If you didn't know, pumping exclusively is a brutal procedure and she went the extra mile, literally pumping out gallons of breast milk for Gus. But after the infection, he wasn't able to tolerate any of it and we had to donate it. Sherry still doesn't want to talk about it.
But once we got Gus infection-free and able to take some food orally, we were free to go. It was over three grueling months, but we're still fortunate we had the team we did.
Since then, Gus has progressed marvelously. We basically stopped using the feeding button within a few months of him being home, sticking with bottle feeding of the aforementioned ridiculously expensive formula, premixed Alimentum, if you're curious. At some point his stomach was able to handle formula that was merely "pricey", and everyone celebrated.
And, right about on schedule, Gus showed an interest in eating adult food.
There's always a concern with babies who do any sort of tube feeding that they'll develop weird food issues, pickiness, aversions, etc. Gus doesn't seem to have any of those.
We have to be choosy to make sure it was soft enough that it wouldn't get trapped in his throat right at the connection point, but he'll eat a wide variety of foods.
Like I said, we're very fortunate. Despite his condition, despite all the surgeries (and there were plenty), he's basically a normal 14 month old. He's strong, bright healthy, and incredibly active. Actually, "active" doesn't come close to describing Gus. He's like the Tasmanian Devil, and just as destructive to furniture.
There are two problems: one is reflux. Gus is no stranger to throwing up and does so about five times a week, give or take. Lots of babies have reflux and most outgrow it. But given Gus's defect and subsequent reattachment he might never recover from it. He's on Prevacid for that, which seems to help. At least, he starts throwing up if we stop giving it to him. (That's another story.)
The most intractable problem, the one that inspired this here blog, is that he's underweight. This is not to say that he isn't growing. He is. All the time. He's just below the range they want babies to be at.
We'll have plenty more to say about that.
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