I am SO tired of the daily battle and unbelievable worry of my preemie. Nobody seems to have the answers to help. He spent 35 days in NICU then a week after he was discharged, he was rushed to a childrens hospital 300 miles away for emergency surgery for an inguinal incarcerated hernia. Two days in intensive care where he was swollen like a balloon due to the blood transfusion and intubation. I don't care what the doctors think, he was traumatized by that, and by the testing they did before the operation and then being starved for 4 days afterwards - they had removed an inch of intestine so I get that. They changed his medication for Silent Reflux and it flared up, big time. Then followed weeks back home trying to find the right meds for the silent reflux which caused him constant pain. Then we have frequent choking episodes which are terrifying as he all-out panics every time. It put him in hospital where they did a chest Xray using the scariest machine I have ever seen. Now he is teething! His congestion is so thick and stringy he is suffering all day, every day. I think that's part teething and part refluxing. The Pedi said that if we can't settle this, he needs to go back to hospital for a scope down his throat - more invasive procedures. I don't think he can cope with much more and I have seen a change in him. He's just so panicky all the time, it's breaking my heart.
Re: Preemie worry :(
@dunnmommy - thank you too!! Although it's truly awful to go through any surgery or invasive testing, it helps to hear a similar story, and one with a happy ending. Our situations sound remarkably similar although my DS's apnea is no longer technically an issue - but we won't let them take the monitor away lol. We had a huge choking episode last night and it really shook me and DH up and we're just exhausted I think. Was your baby OK after the surgery or did you see any difference in how he was, in himself?