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We have a little girl 2 months old that just went through mandibular distraction for Pierre robins sequence .

She had to have the ng tube placed on feb15 and still has it now , she is 2 months old and at first she was taking 50_75% by bottle and then went in for the surgery on herjaw . After that we had to re teach her to eat and it was going great up until a week ago when her feeding dropped to 10% . She feeds for ten minutes by bottle and then freaks out(asssuming she's starving) because after we quickly calm her down we feed her the remainder via ng tube and she stays calm.


She is coughing,sneezing,refluxing. Everything I read says that's what happens with the ng over time and mostbabies won't even take a bottle after all that . And then the doctors force us into a gastronomy tube.


Hoping to have a conversation with our favorite doc tomorrow to try pulling the ng for a day or two to see if it'll help, they have done every test you can do and our little girl is healthy and we really don't want to have a g tube placed.


We have a love hate relationship with modern medicine . I know the current doctor will not allow the ng to come out , however she will happily place a g tube or prescribe loads of other meds


Anyone experience anything like this? HELP
 
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