glad its given you some kind of support..I know how it can be when you are in limbo. I remember coming on mn and trying to find out others in the same situation and even googling ds's illness which was the worse thing I could have ever done. Things I read were so much worse as usual and I was petrified...
I guess I also just wanted the comfort of knowing what was wrong and how it would be fixed.I wanted to wish away time tbh.
even being in hospital made me think.."ds is very ill yet there are so many other babies/lo's around him who were so much more iller iykwim" . Made me sad yet lucky that ds was fighting.
Ds had hirschsprungs disease. The nerves were missing from the lower part of his bowel. These are needed as they tell you and allow you to poo. The lack of poo meant it was building up in his tummy so causing feeding issues and projective vomiting with the little milk he was having. Usually diagnosed at birth due to no passing of merconium BUT ds was unusual in that he passed a small amount...
He was also bringing up bile which is not good, this condition if left undiagnosed/treated would lead to a perforated bowel....etc
Ds had a corrective op initially but he developed an infection and this led to a stoma being fitted (colostomy bag)...
Must admit this was one of my saddest times ever..
BUT you know what, we looked on the bright side, this was only temporary and it was keeping ds alive iykiwm. He has it reversed/removed around 9 months old. We are still having pooing issues BUT at least he can poo. . We won't now the full extent of his condition until he needs to be potty trained (no rush for that!) but you know what, he's my little boy and im proud of him. Hes a fighter and so strong and so adorable. . He may be a typical boy and want attention 24/7 and still need bottles during the night but hey ho .
I hope you find all you deal with in hospital brill,they become a bit immune to it but if you ask questions and tell them how you feel...they will help you.
Let me know how your dd gets on and please don't hesitate to CAT me if you want to chat further.
I can't help you with your direct concerns BUT I can help support you etc. xx