The most common question we are asked is if she still has her feeding tube and/or when she will have her feeding tube out.
Yes, she does still have her feeding tube. They didn't expect her to need it this long, but unfortunately due to insurance, her speech (feeding) therapy was delayed 2 months when she came home, so she had a whole 2 months of not receiving any food by mouth, putting her very behind.
She is currently doing well learning, but is still a baby and doesn't quite understand eating by mouth. She does not make the connection between eating by mouth and satisfying hunger. To be honest, because tube feeding is so routine and scheduled, she doesn't really get a chance to get hungry at times.
We are having to learn ourselves how to treat her like other babies her age and not feed her so routinely. Not feed her while she sleeps. Letting her let us know when she is hungry.
It is quite challenging, because a hungry baby is not a very cooperative baby, and since she isn't used to eating by mouth, if she gets too hungry, she refuses feeding therapy. If she is sleepy, same thing.
The short answer is: we don't know when she will have the feeding tube removed.
Her speech therapist is optimistic it won't be long, and feels like a goal of eating mostly by mouth by summers end is totally possible. For ours and especially Olive's sanity, we are just allowing things to happen when she is ready. To have patience and optimistic all at once.
I know it will happen and eventually this will be a distant memory, but until then, please be patient with us.
Understand that while it is considered a disability, Olive is a very normal kiddo. Understand that we work very close with a team of highly educated and experienced professionals in an effort to get her eating by mouth.
Also, understand that Olive also is not like other kiddos just transitioning to solids fell breast/bottle. She will not just eat when she gets hungry. That will come one day, but as I said, she is still making that connection.
Thank you for all of your support and encouragement. I will try to update you all more often on her progress!
No comments:
Post a Comment