As I said Before, I come from a huge family, my mother is 1 of 14 children, and we have never had any kind of illness in children, ever. We found out that Alex had Hydrocephalus about 3 months before I had him. No one would tell us what it was or what it meant either, which was really tough. We had to go to a specialist before anything was explained. When I found out what it meant, I tried to do some research on here, but I could only find pictures of 3rd world children, and those scared me even more. They put me on bed rest until Alex was born about a month early. He was diagnosed with hydrocephalus, chronic lung disease, and acid reflux when he was born. They took him immediately to have his VP shunt placed. He spent one month and one day in The NICU at Kosier's before he could come home. We were told to plan a funeral, and that he would never come home. That he would never laugh or eat, etc.
When he came home, I really didn't know what to expect. I was told that almost ANYTHING could mean the signs of a shunt malfunction, and I mean anything. Things like Throwing up, crying too much, sleeping too much, a fever, headaches, not eating enough, eating too much...anything you can think of, could mean his shunt. He was on Oxygen when he came home. His head was abnormally large (due to the hydro) and it made things harder when it came feeding or holding time, since his head needed even more support. He was very small and frail, and I will admit it was very scary, even for me, a mother of a 3 year old son. One thing he did well was eating! He would scarf down that bottle! I guess having overweight parents was on his side. :) the problem for him was holding it down. His acid reflux was BAD, and he would throw up entire bottles at a time, at least 3 times a week. It would come out his mouth and nose, something else that was very scary to watch.
He was in and out of the hospital a lot, mostly for throwing up issues, but one time because he quit breathing entirely, and had to be rushed up. He was diagnosed later with Epilepsy, Cranial Stynosis, and a heart murmur. He also came off his oxygen. He is still in and out of the hospital, and awaiting surgery for his Cranial Stynosis. No shunt revisions so far (knock on wood) but every day brings a new struggle, and every day also brings a new wonderful memory.
***UPDATE! We have recently found out that Alex has L1 syndrome, a rare genetic disorder. Click on the side link to learn more about it.
