AliviaMy story is one of hope, courage and belief. My daughter was born on 3/18/97 and was a gift that I needed in my life! She was amazing, so beautiful and not one flaw on her body. While in the hospital the doctor came in and gave me the news that he heard a slight heart murmur but when he checked again he didnít hear anything abnormal and not to worry. After being home for a few days I noticed something was not right with her. I knew newborns sleep but she just seemed to sleep all day and became lifeless.
We took her to the walk in clinic and they went to get a temp and she was not reading on thermometer so they rushed her to the ER. After spending a few hours just waiting they told us she needed to be air lifted to UVA and it was something with her heart but the local doctors did not specialize in infant heart problems. So we took the trip in the middle of the night to meet her there. When I got there she was in the NICU and hooked up to several machines and she had an IV running through a vein in her forehead. The doctors came in and told us she had Tetralogy of Fallot and DiGeorge Syndrome. We were devastated and had no clue what to do!
She had a surgery to repair the hole and widen the aortic valve. Things seemed to be going well she got color back, the swelling had went down, she was even opening her eyes. I was finally able to hold her even though she had tubes all over her body. Then we received another blow, the hole was not fully repaired and it was leaking. They had to go back in for another surgery however this one would be the last time I would see my baby's eyes open! During the second surgery her heart stopped twice so they put her on the ECMO machine to allow her heart time to heal. After 3 days it was not working and we had to make a hard decision to let her go. It was the hardest thing to watch your baby leave this world and to hold her body knowing her soul was gone.
While I donít have my daughter here on this earth I have the memories and the experience. She brought so much love into a family that needed it. So she is my angel in heaven and on earth! I have since had two healthy children and she is their keeper. I wanted to give my story with the hope that someone can relate and it will help give them faith and courage to know that while I think of her everyday I made it through.
Story by Aliviaís mom, Nichole - Virginia