Tuesday, August 9, 2011

Two steps forward, one step back - not just a NICU adage.

I know, I know, it's been nearly a month since there has been any activity on the blog - but not because there hasn't been anything to say. As it so happens, July turned out to be a pretty miserable month around here.

We decided to transition Max to a blended diet - in other words, we were just throwing a finely calculated  mixture of breast milk and age appropriate foods into a blender, making a totally unappetizing (but healthy) slurry and delivering it via Max's g-tube. We had several reasons for wanting to do this, but among them we hoped that we could get a larger volume of food into him, offer more calories, and minimize his reflux related vomiting.

At first, it went really well. Max was tolerating a larger volume of food, he was getting nearly 200 extra calories every day, and he was hardly throwing up at all. It seemed like a win. In retrospect it seemed that it may have been too much change all at once for his system, and he experienced some...well, digestive issues.

It all snowballed into a major setback for Max. He was vomiting at least half of every meal. During the heatwave that we were experiencing at the time we were putting pedialyte into his tube between meals just to make sure he wasn't becoming dehydrated. After not gaining any weight for a month, he lost weight. The oral feedings, that had been going so well, stopped altogether. He was so uncomfortable that he refused to sit on the floor, crying as soon as he was put down to play. He was waking up in the middle of the night for the first time since December, crying with reflux pain. It was all around awful.

After unsuccessfully trying some dietary adjustments and remedies, we had to take a medicated route to get Max's system running normally again. We decided to return to the fortified breast milk and let his system recover. We seem to now have Max back to his baseline. He's regained the weight that he lost, he's no longer in pain, his reflux is manageable, and he's beginning to eat small amounts by mouth again. We may at some point, very slowly try to introduce blended foods again, but for now we're going to concentrate on getting food in Max's mouth, and making the most of August.

So, while we hunkered down, trying to survive July, we learned that steps backward aren't just for the NICU.