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Why do the girls have feeding tubes? (I am going to answer this question based on all of the testing we have done on Jilli, we haven't done the same level of testing on Lydia because she reacts the same)
When food goes into their mouth the first swallow looks fine, throat motility is not great, there are areas that don't work like they should for food to move down. Once food goes down it is immediately refluxed back up the throat. Once back at the top food is trying to go up and down at the same time and in that process some food ends up in the lungs (aspiration). Any food that is not vomited back out or in the lungs stays in the stomach for a long time.
Its not safe for the girls to eat orally. They choke, get really tired and end up with lung issues. When both girls were babies and we were trying to give them bottles they would tire before being able to eat as much as they needed to.
We can't feed the girls into their stomach because then they reflux and aspirate and/or vomit. Their stomachs don't handle their own body secretions well and Lydia's stomach is drained 24/7 and Jillian's is drained overnight and sometimes during the day.
Both girls have tubes that feed them directly into the intestines.
For the girls it is issues in multiple parts of the digestive track that make them need the feeding tube. For them there is no fix to all of those problems. There are some surgeries that would help one issue but the effects of that would likely make another issues worse.
Their feeding tubes make it so they can live. They make it so they can get nutrition in while protecting their lungs. They make it so it doesn't take so much energy to ea because energy to someone who has muscle issues is precious.
The girls are still considered undiagnosed but everyone agrees that it is a muscle problem. At this point we are all operating on the assumption that the tubes are forever, but that ok because they are keeping my kids alive.
Also, I am really excited that as part of Feeding Tube Awareness Week I was published in Complex Child Magazine with two articles about feeding tubes. I am so grateful for that awesome opportunity.
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