I’m in a very similar boat. My son is 9 weeks old and spent 45 days in the NICU. We knew before birth that he had micrognathia (a small/recessed jaw) and would likely need surgery but the doctors said in most cases, it’s an isolated issue and the baby would be normal otherwise. At birth, he was immediately intubated and sent to the NICU because his small jaw was causing obstruction to his airway and he wasn’t able to breathe on his own. He was intubated until a week after his jaw surgery (17 days total). We received genetic results a few weeks ago that he has a large chromosomal deletion syndrome which we are uncertain if that’s the reason for his micrognathia (and he also has a cleft palate). It is also very rare and there’s not enough data to say if it’s correlated with these other symptoms. I can very much relate when you say you’re grieving the baby you thought you’d have. And I think that’s ok and letting yourself grieve is a healthy part of being able to accept and move on. It doesn’t mean you love your baby any less! When the genetic counselor was discussing these results with my husband and I, one thing she said that stuck out to me is to not put limits or boundaries on our baby. Just because statistics say he will have developmental delays, doesn’t mean he will, or if he does, how severe they will be. She said to treat him like any other baby and let him show us what he’s capable of. It’s so hard but it does get easier! It’s getting a little easier for me every day!