Hi everyone. I would like to start by asking people to ready my profile page and give any comments on my situation that you may have. Its a long long story. Maybe I will copy and paste it here.
Our son Noah has had a rough start from the day he was born...dead. No im not kidding. When Noah was born he did not breathe for the first 20 mins of his life and required 2 shots of narcan due to a nurse giving me too much drugs in my IV. The dr was about to give up on him when he finally took his first breath. From that moment on we knew there would be problems. Noah had a very large head and his eyes were quite large.. But is the cutest thing ever. Noah could not suck never did and still cant. His bottles had to have large holes cut in them so the formula would just pour into his mouth. Dr said there was nothing wrong. At 8 months he was not able to hold up his head, roll over or sit. He was finally able to do these things around his first birthday. Noah was still on straight formula as he was not able to swallow even pureed foods. At 18 months he was able to start eating foods that were very soft and mushy but still mostly drank formula. Dr said nothing was wrong maybe i was not doing something right. Im sure i was doing fine... my 4 year old is healthy as a horse! Finally when he wasnt standing at 20 months the dr agreed to send us to childrens to see a neuro. Noah recieved an MRI and were told that he had the Chiari Malformation and that was all the info we were given. That he was sending Noah to a neuro surgeon and he walked out the door. Noah has since learned to stand and walk. His head is still large and he doesnt eat much unless its mush like a banana or yogurt or mac and cheese over cooked. He cant eat mean at all...he just gags and throws up. The neuro did tell us that the chiari was pressing on the back of his throat and causing the eating problems as well as his massive drooling issues. He is 20lbs soaking we at 27 months old. Like i said his eating is effected, he drools, he sleeps 18 hours a day, and complains of owie head very often. He has episodes where he cant eat at all and can only drink so we still have him on a formula. There are days where is has trouble walking and standing or keeping his balance. He has apnea when he sleeps. There is so much more. I am very scared. I dont know what to do or where to go? I dont want him to die. I dont want him to be sick his whole life either. I would appreciate any info on babies with this malformation.. Feel free to ask questions and I will answer them the best that I can. Also...his sister is now 8 months old and not rolling or able to sit either. Starting to worry about her too.