Once again we have had to lower our oral feeding goals for Hayden. Instead of working with pieces of soft mashable foods, we are forgetting about those and going back to pureed baby foods since he is the most tolerant of those. His speech therapist wants us to keep the flavors limited to about half a dozen so he has an idea of what to expect when the spoon comes to his mouth. The hope is that we've been trying so many things that he is not sure what to do with the food or drink at first since he can't see what is coming at him. If we keep things consistent for him, maybe he will be more accepting of food and drink entering his mouth. Nothing is really working and this makes sense, so we're going to give it a shot.
Durning feeding sessions, we will start with trying to desensitize him my touching his arms and then working his way up to his face. After we work on that for a few minutes, we will begin with the purees (he cannot tolerate food with texture yet). Our goal right now is to touch his lips with the spoon 10 times so that he can at least get some of the flavor in this mouth. If we get a chance to get some food in there we go for it. Two or three bites can ususally find there way in. He's not thrilled about it, but at least there isn't usually any gagging. Probably because it is thick enough to give him time to figure out how to handle it. We also give him a cue that the food is coming such as,"Hayden, here comes your spoon. 1...2...3." Right after I say 3, I put the spoon up to his mouth to try to elimintate any surprise for him. After that, we move to a beginning sippy cup with water in it that allows me to push a little water into his mouth if I get the chance. This is by far his least favorite part of the session. There is a large increase in arm flailing, and head moving from side to side in an effort to avoid drinking. Again, we give him a cue so that maybe he'll know what to expect. Drinks come much quicker and are much harder for him to handle. It takes him 2 or 3 swallows to get down what he should be able to in 1 swallow. We try to touch the cup to his lips 5 or 10 times. Usually, I can get 1 or 2 squirts of water in his mouth--much to his dismay. To end the session, we give him something he can put to his mouth himself (pretzel rod, bacon, beef jerky, a lollipop, a popsicle) that won't break off into pieces easily. Most of the time, he ends up throwing it on the floor without even bring it near his mouth.
It is hard to have to step back once again. We never invisioned the feeding tube as a permanent part of Hayden's life. It was just supposed to be a way to get him over this hump and keep him alive until he is ready to eat everything he needs to on his own. After days like today, you wonder and and fear that the tube really will never go away. I know there are far worse things in this world, but we dream of Hayden having as much independence as possible. Feeding your child is supposed to be something we take for granted. You give your child food and he/she eats it; just like Nicholas does. Hayden has so many other challenges, this is just not one we ever expected. The decrease in Hayden's feeds from a week ago, coupled with this regression is heartbreaking. Especially since I had been able to creep up his feeds at night 1ml at a time at a consistent pace over the last several weeks. Some days I still feel like we are on the NICU rollercoaster...1 step forward, 2 steps back. One day we hope to be looking at the scar where his feeding tube used to be.
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