She Chose to Eat

On 4/28 we took Ainsley off her nighttime drip of formula. The pump would run all night at a rate of 50ml per hour. So she had been getting a lot of her calories that way. I decided after the Cincinnati visit to stop, mostly because if she really is refluxing while she sleeps (haven't received the test data yet) it didn't make sense to me to feed her a runny formula while she's laying flat.

Since we made that switch she's become better able to handle larger volumes of food. Imagine that. And she's been hungrier. Imagine that, too. With every tube feeding I give her tastes of what she's getting through the tube. I've always done that to build an association between the taste of food and the sensation of fullness. She's become increasingly interested in eating more. And even taking a few tablespoons of food at a time. I think it's more than the team in Cincinnati was recommending. And I agree with them that it seems of questionable safety to feed her because of small quantities of food getting onto that swollen airway tissue (the swollenness keeps it from actually entering the lungs.) But they believe it's an issue of her not controlling the food in her mouth very well. And how will that problem ever go away if she doesn't eat? So I'm following her lead and letting her decide. I would like to see a successful swallow study before we proceed full force with oral eating.

Sometimes I offer the choice between eating with a spoon or tube feeding. Once she even chose the bowl of food over the syringe because the syringe was empty. Makes sense. Empty syringe or bowl of food? Hmmm. No brainer. But this time I filled the syringe and had the container with food and a spoon, held them up and let her choose. What do you know. SHE CHOSE TO EAT WITH THE SPOON. After 10 or so large mouthfuls I sensed less interest and offered the choice again and this time she picked the syringe. It's so great that she clearly understand the choice that she is making. And even more exciting that as hungry as she was, given the choice she wanted to taste the food. How great is that!?

This video is from yesterday. The food was a little runny that day so it was harder for her to control. She isn't doing as well as she had earlier in the same day before I got out the camera but at least you get an idea of how she's doing.