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Oh Shannon, I am sending big hugs to you...Be sure to check out the SharePost started by Amy D. There are quite a number of Reflux Moms there who are dealing with similar issues, especially related to feeding issues/refusal.
I wonder why your sweet girl is still in pain despite all of the meds and special formula. Has the doctor checked for Milk Soy Protein Intolerance or food allergies? Esophagitis? Eosinophilic Esophagitis?
If food allergies or intolerances are suspected/diagnosed, some babies are put on a completely hypoallergenic diet. One brand I know of is Neocate.
I have heard of babies needing tube feedings for short term. If all other medical conditions have been ruled out, sometimes a feeding tube can give the digestive tract a rest. My daughter had a feeding tube and a pump for a while. At first, it was my worst enemy and I felt like a complete failure in the feeding department. Then the pump and tube became my best friend. She could eat as much (or as little) as she wanted, the pump allowed me to make up calories and nutrients without any work on her part...as well as by pass the feeding aversion.
I would say that a ng tube should be a last resort when all else has been tried.
It sounds like your daughter has the type of reflux where she vomits and expells her stomach contents some of the time. Other times, she is backwashing-the stomach contents go up and down the food pipe. This can cause terrible irritation to her esophagus or food pipe. The lining of the esophagus is not meant to withstand the acid like the stomach. Further, the food and acid can try to enter the lungs, causing choking and the breathing issues. I am glad the doctor is trying to address these issues. It is very upsetting to have so many challenges with such a little baby plus a big sister too.
I know you are a wonderful mommy. Unfortunately you will need to work harder than ever for a while longer. The diagnosis phase of reflux can have its ups and downs. Be sure to ask for and accept any and all offers of assistance right now. It is too big of a job for one mommy to do.
Also, keep in touch with the other parents on this site for venting and support. It will make a world of difference.
Please feel free to write back as often as you need to. We are all here for you
Jan
The Reflux Mom