Friday, January 05, 2007

Olivia was born on January 25, 2006. She weighed in at an unsuspecting 3lbs 9oz. She was transferred to All Children’s Hospital in St. Pete, FL the same day for precautionary testing to see if a reason for her lack of size could be determined. Two days later on Friday, January 27th, an Echocardiogram (heart ultrasound) revealed that Olivia had a Congenital Heart Defect called Truncus Arteriosus. A week after her heart diagnosis, we were told that Olivia had DiGeorge Syndrome, a genetic condition where she is missing part of her 22 chromosome. Because of Olivia’s lack of size, the doctors and surgeons decided to give her an opportunity to gain as much weight as possible to increase her chances of a successful surgery. This was also possible because she was not showing serious signs of distress. On March 7th, at 6 weeks old, Olivia had her first open heart surgery. Olivia went the surgery and recovery with no issues at all. We were so happy.

On March 30th, 64 days after being admitted, we headed home with Olivia for the first time. She weighed just under 6lbs and was getting bigger by the minute. A few days previous, she was given a feeding tube to assist in feeding.

Olivia is approaching her first birthday and weighs in at 13lbs 5oz! She has thrived since being discharged and continues to learn new things. She talks like she knows what she is saying, she will let you know if she is not happy and she definitely likes to watch her cartoons. She is developing normally and on track. Out biggest battle is feeding. Olivia still will only take about 3oz of milk by mouth daily. We are working hard with Speech and Occupational therapies to help her learn that eating can be fun.

Olivia’s prognosis is good. She will need additional heart surgeries in the future, we just do not know when. We live life one day at a time and cherish each and every moment that we are afforded. We know that we have a very special little girl.

Heart Hugs <3

Rodney, Jamie and Olivia

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