Lily was born January 4th 2013. During her newborn screening in the well baby nursery, it was discovered that she had a murmur. The doctors felt it was normal, caused by the hole that all babies are born with, called a PDA. To be safe, an ultrasound of her heart was done. It was discovered that she had a much larger hole in her heart also, as well as other problems. The results were sent to Birmingham Alabama to be read by a Pediatric Cardiologist. For the meantime she was moved to NICU where she could be better monitored and taken care of. After 4 days, she was released to go home and follow up the next day with the same cardiologist in Birmingham. At that appointment it was discovered that Lily had a Congenital Heart Defect known as Tetralogy of Fallot. The doctor decided that Lily would need open heart surgery around 6 months of age. He would see her periodically in the meantime to make sure she was ok. Lily went home with her family and the problems began. After her initial pediactric visit for her first check up, her mother was not satisfied with the answers given. After 2 weeks, she sought a second opinion with a different pediatrician. He did a more thorough exam and found that Lily's bottom did not look right. She was refered to a specialist in Birmingham at Children's of Alabama. The specialist did her exam and found that Lily was also born with an inperforated anus and a perianal fistula, basically her anal opening was too small and in the wrong place; not completely functional. She was immediatly schedualed for surgery the following day. She was 3 days shy of 1 month old at the time of her first surgery. The surgery went fine, and Lily now had a Colostomy bag to allow her to use the bathroom. During her week long stay for recovery she started having problems with her heart. Her O2 stats kept dropping. She was moved from the regular Cardiac floor to cardiac ICU and placed on some medication to help her. When the medicine showed signs of working after a week, she was moved back to cardiac CCU. It was determined by a team of cardiologist, that Lily would need her heart surgery much sooner. She was placed on a high calorie diet to force her weight gain to an acceptable level. During this time, she meet with a genetics doctor and it was learned that she has a genetic deformity that has caused all her problems, called trisonomy 22. Basically her chromosonne number 22 has 6 legs instead of 4 (more genetic material than normal). After several weeks, March 7th 2013, she had her first open heart surgery. The surgery went well, but they had trouble getting her heart back in rythem after they took her off bypass, but were able to do so after a little effort and use of a pace maker. There was also difficulty getting her bleeding to stop. During her surgery it was discovered that the valve in her pulmonary artery in her heart was less than half the size it should be and was unable to be saved. It was removed and she currently has no valve there. As a result, she has a slow "leak" pooling into her left chamber of her heart every time it beats. Over time she will need another surgery to put a new valve in but for now she will be ok without it. She was put in ICU for recovery and after 4 days, moved to CCU on the cardiac floor. She should have been there a week longer and then been able to go home. However, she caught a bacterial infection in her arterial line which put her staying an additional 15 days for treatment. She was then released to go home. After a few months of constant doctor trips, she was scheduled for her repair on her bottom on May 10th, her third surgery and a 3 week stay. In July, she was able to have her Colostomy removed, her forth surgery and a 2 week stay. Lily is now doing well and is at home with her family. She recently had her cardiac appointment and her repair on her heart is holding well. The leak is minimal and of no immediate concern. A new condition was discovered however, called Pulmonary Atresia . The veins in her arteries in her heart were narrowing. The doctor felt that this would not be an immediate concern and so decided he would see her back in one year for further evaluation. Lily is enjoying being at home and is learning new things everyday. She let's nothing slow her down and shows a strong determination in life. One thing I have learned through all of this, is compassion and a strong will/desire to help others in similar situations. Its something that takes hold of you and becomes a part of who you are. I AM A HEART MOM.