Miss Katie.............

So, here is our pretty little girl.............smiling away! I received the call from the CHOP neonatologist today. Bad news-Katie cannot swallow thin liquids well-she aspirates. She does do better with thicker liquids, however, she tuckers out too quickly. She would not be able to sustain herself this way. The other problem the doc talked about was Katie not having a gag reflux. The speech therapist was sticking her fingers down Katie's throat, and Katie was not gagging. So, the question is, Why isn't Katie's brain telling her to gag? Doc seems to think this may clear up as her tracheamalacia improves. In any event, Katie will be getting a "GJ" tube put in sometime next week. This will be done under sedation by the Radiology department. This tube is similar to a "G" tube, however, will not allow her to throw up her formula, which since she does not gag, could cause aspiration, and pneumonia, and hospitalization. This tube requires 18 hours of continuous feeds. (It's not like I'm going anywhere anyway!) And then she will have two 3 hour breaks, in which I will bottlefeed her. Doc expects this GJ tube to remain in place for six months to a year. She will have follow up appointments with GI Tube Clinic, Feeding team, as well as Early Intervention. At some point, about six months, she will have a follow up with Neurology to do a repeat MRI.

The good news is it appears Katie will be home sometime in the upcoming few weeks. We are so happy she will be coming home!!