Hi Kika! 
That is quite a case. Were you also able to rule out a submucosal cleft of the soft palate, or were you hoping the ENT would be able to explore this? It is another cause of milk coming out the nose (happened with my own son)....  I agree that feeding is scary for this baby and the sooner this is figured out, the better he will do. Thickened feeds don't sound like the answer.

~Lisa Marasco

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