Sounds like you've tried a lot of good strategies. Another thing that 
might help is to prefill the nipple shield with milk. Once the shield is 
secured deeply on the breast, you can fill it from the front holes with 
a curved tip syringe. Mom can then offer baby the breast, preferably 
while she reclines so baby can be prone. They might be able to have baby 
  in a straddle position, so the baby comes up and over mom's belly, 
which can allow more head extension.

Has the ENT looked beyond the baby's mouth to the airway? The stridor 
and noisy breathing could be due to poorly coordinated swallowing due to 
the tongue issues, but it could also point to a respiratory malformation.

Catherine Watson Genna, IBCLC  NYC

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