December 18, 2006 - March 20, 2011
When I was 6 months pregnant with Kylee we found out she had a congenital heart defect and a syndrome of some sort (her leg to arm ratio was not "normal" and she was missing part of her nasal bone). We decided to deliver 2 hours from home at Children's Hospital of Wisconsin Milwaukee so that if Kylee had to go to the NICU we could all be together. Kylee was born on December 18, 2006 and spent 5 days in the NICU for feeding issues and low apgar scores. After being home for 5 days Kylee stopped breathing and I had to do CPR on her. She was air lifted to Children's Hospital of Wisconsin Fox Valley were she spent another 5 days in the NICU. This time when we came home we came home on oxygen and an apnea monitor. At the age of 2 months Kylee was diagnosed with 1P36 deletion syndrome. With this came seizures, feeding issues (at 9 months of age got a feeding tube), high blood pressure, vision and hearing issues and developmental delay. Despite all of this Kylee was a happy and loving child and we felt so blessed to have her.
In June of 2010 Kylee was diagnosed with medulloblastoma (cancerous brain tumor separate from her 1P36 deletion diagnosis). She had surgery to remove the tumor and did 6 weeks of radiation but her body was too weak and never recovered. Her blood counts remained low and she was receiving blood products weekly. Because of her low counts we were not able to do chemotherapy. Five months after we stopped all therapies Kylee got a acute GI bleed during the night. Kylee's body jut wasn't strong enough to recover and she gained her angel wings on March 20, 2011.
During Kylee's 4 years she has touched so many peoples lifes and we have been touched by so many wonderful people. During Kylee's y hospital stays at Children's Hospital of Wisconsin and our stays at the Ronald McDonald House we received so many wonderful gifts that always made those place feel a little more like home. We now want to give back and help others the way we were helped.
The McGlin Family
