People occasionally ask me questions like, "so how long is he going to need that?" "why can't he eat normally?" etc, and my response is usually pretty simple...I'm not sure. That can be difficult for people to understand I think...they don't quite understand why a baby wouldn't just take a bottle in their mouth and grow like normal. Unfortunately, it's not that way for everyone. The act of feeding consists of three movements inside the mouth...suck, swallow, breathe, suck, swallow, breathe. Seems easy enough, but when one or more of those things doesn't work correctly it can be extremely difficult. For Jameson, it was the breathing. An infant's airway is obviously very small, maybe as wide as a nickel...Jameson's was about half of that. This was due to a lot of anatomical features including an underdeveloped jaw and laryngomalacia. (The upper larynx is so soft and unsteady that it collapses onto itself when he breathes.) This is where that squeak noise comes from when he breathes, it's called stridor.
After a couple weeks of trying to bottle feed with him and one incident of him not breathing and turning blue he was admitted to the hospital where he stayed for two months and got his feeding tube. There are a few different kinds of tubes out there, Jameson has a G tube which is a small tube that goes directly into his stomach. On the outside of his stomach is what is called a button. It's a covering for the tube that you can open and close as needed. Jameson has what is called a Bard button, which is the smallest and most discrete. When closed you can't even see it under his clothes.
Jameson eats through his tube every 3 hours for about 50 minutes. He takes only about 3 1/2 oz of food which is not much but all his small stomach can take. When we first were told about the tube, we were optimistic thinking he would only need it for 6 months while he grew...but it didn't take long to realize it wouldn't be that simple. Not only does he need to learn how to use his mouth for eating, seeing as how he never truly learned it, but we have to work with him on what it is to even be hungry. Obviously when you're eating every 3 hours for an hour at a time, you don't get the same hunger cues as a normal person would get. All of that needs to be worked on with his speech therapist in 2014 before answers on when he can get off the feeding tube can even be thought about.
I hope this answered a few questions people had on why, how, and what the feeding tube is all about. We are all more than willing to talk to anyone about it or teach someone that wants to learn. Thanks to everyone again for the support and love!
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