My niece was born at Melbourne's Mercy in May. She was born with a cleft pal. only. And it wasn't even noticed until she was 12 hours old. It was a big shock, but she is such a beautiful baby and perfect in every other way.
We have learnt a lot about the condition and treatment, etc. She has to have an operation at 9 months to fix and have stitches, etc. She will also have to wear arm splints so she can't put her fingers or anything else in her mouth and can only have them off for a brief time each day until they come out. My sister has to train her to use a sipper cup by then as she also won't be able to have a bottle during that time. You probably know all this by now, though. I am not sure about the problems associated with the lip only, but because of the cleft she also has to have a special bottle to use each feed to drink properly and you can get them from the Cleft Pal. Assoc. Vic or 2nd hand if you are lucky. They are expensive but work really well. You can only sterilize these bottles in Milton, so don't buy a sterilizer if that is the case. She does have other bottles to mix her formula in and store as these bottles are only small and hold about 150ml (I think) and that's not enough for a full feed after a couple of months. My sister also expressed for the first couple of months to supply her with the breast milk but was very time consuming especially with a 4 yo as well. So changed over to formula. My niece had to stay in hospital an extra 5 or so days as she wasn't gaining weight very quickly and they wanted her to regain her birth weight before releasing. Once home she powered on. She doesn't cry very loudly either. It's more like a pitiful meow. You can also hire the sleep apnoea monitors for the babies and apparently it is a good idea for cleft pal. babies as they are more susceptible to the condition. You can also pick them up 2nd hand every now and then. My niece is also hard of hearing due to the blockages in her ear and is now wearing a hearing aid until the operation when they will insert grommits and fix that altogether. She also has a few problems with milk coming out of her nose, but it doesn't even bother her.
I know all this sounds a bit much to take in. But you can get so much info from the associations and I believe it is better to be prepared then to be so overwhelmed with it after the baby is born when all these strange things happen. You will be able to enjoy the baby so much more when you know what is going on and won't be so panicked.
If you like I could contact my sister and see if she is willing to get in touch with you. You may be able to get some advise and contacts from her and I will ask her if she will be selling any of their equipment after the operation. You might have a use for it.
See what happens at your next scan and you will know then what to expect.
Good luck. They can do so much these days, you will never know.
If you would like to get in contact with her let me know and I will talk to her and pass on your details and then she can contact you if she would like to talk to you.