Introduction!By: stefynie (11:25 AM 05/06/2015)
Hi, my name is Stefynie. My son's name is Kameron and he is 5 1/2 years old. He is a twin and they were born at 28 weeks. Kameron developed NEC at 7 days old and ended up having a bowel resection. Most of his ileum was removed, along with his ileocecal valve. He wasn't able to leave the NICU until he was a little over 6 months old, broviac catheder and mick-key button intact. We have been through it all, the 4 a.m. rush to the ER because of a fever (that actually happened many times), turning around and going back to the hospital 2 days after discharge. He spent more time in the hospital his first 3 years of life than he did at home. I have never sought out a support group prior to this because I felt Kameron's horde of doctors were giving me all the information possible, that they were doing everything possible to help him thrive, and that we had a handle on his condition. NOW 5 1/2 years later, I'm not so sure about that. Upon his most recent hospital stay, Kameron had to receive blood transfusions due to anemia. During that stay, many many many issue were coming to light that I feel should have been addressed years ago, information from his doctors I have known since Kameron's birth was just then being shared with me. Things about his condition I didn't know about (yes after 5 years there are things I didn't know!) I realize that I could have done extensive research back then, but I was naïve and completely trusted that his doctors would provide me with all the information necessary. That is what has brought me here, I need help and advice-pertaining to nutrition, medications, ect...I look forward to getting to know everyone, and it's a sense of relief to be able to take words of wisdom from parents who have been going through the same situation.