We found out today that LO (8 weeks old) has a partial cleft palate. NONE of his doctors noticed it - even the ENT that we were seeing for possible hearing loss. Today we saw a new ENT and he spotted it right away. This explains a lot. LO failed his newborn hearing screen in both ears, failed follow-up testing, now we know that there's fluid in the ears due to the cleft palate (i.e. the hearing loss is fixable!!)
It's been a struggle to breastfeed him from the start. He latches fine but doesn't seem to suck hard enough and doesn't get much more than an ounce a lot of the time. If I'm really full (such as 5 hours since last feed), he can get 2 - 3 ounces, so I have been working on boosting my milk supply because I think he can get to the milk easier when there's more to be had. It's tough, he feeds for almost an hour, then I give him expressed milk in a bottle (which takes another 20 mins), then I pump. By the time we're done it's almost time to start again. I'm sure some of you know how that goes. Plus he never, ever, ever wants to be put down, so my house is atrocious.
We have an appointment with the cranio-facial surgeon in two weeks. There we should find out how likely it is that he will need surgery to close the gap at the back of his throat.
I'd love to hear from anyone with similar experiences.