On June 7, 2005 Alex was born with Tetralogy of Fallot with Pulmonary Atresia or TOF, and was transferred to Cedars-Sinai MedicalCenter. Alex had his first major surgery at 7 days old and suffered from a staff infection that caused his stay to last 2 ½ months. He was the first infant to have a Wound Vac that healed his scar. He was my hero because he endured so much pain entering this world; he gave me strength to be the mother I had to be.
On August 18, 2005 a day after my birthday and a week after his father's birthday he was finally sent home for the first time, we could not have been happier. However, we did have to clean his open wound until it closed. Alex was a remarkable loving and caring infant, though fragile, he acted like a healthy baby. His weekly routine included occupational and physical therapist.
On July 25, 2005 Alex had his second major surgery which was successful but held him back physically. He was sent home August 7, 2005 and acted like a healthy child, he did things with such grace. His surgeon and cardiologist were so proud of his recovery and ambition to live. As parents you never expect the unexpected until that moment, then it comes to you like a bolt of lightning and you know what to do. Then and only then you triumph. If only we knew what joy Alex would bring us and those around him we could have cherished him more.
However, a year later, his doctor gave him the all clear to travel home for his second birthday. He enjoyed his second birthday surrounded by family and friends. Tragically, he passed away 4 days later. His surgeon, cardiologist and his pediatrician were all surprised and horrified to hear such news.
Prior to that fatal day, while visiting his family for the first time, we were so happy because our naturally shy and distant child shined almost like he knew it would be his last week with us. I believe because he got to truly enjoy life and be the two year old he was meant to be, this was his way of saying good-bye. We are so grateful for the time we had with Alex but wish we had much more.
For Alex being so little he accomplished more in his two years and four days of life then most of us will in a life time. He brought distant family members together from both sides of our family, he was truly remarkable!