ILEY'S STORY

Anyone who knows Iley knows she is a compassionate caring person who wants to be friends with everyone. Essentially, everyone is Iley's friend.....and while a lot is yet to be written, for now here is her story.   At 22 weeks pregnant, Ileys parents found out she had a congenital heart defect. After many echo cardiograms, she was diagnosed with a balanced AVSD and a possible Aortic arch defect. Iley was born on June 3rd, 2011 at 37 weeks gestation at U of M Motts children's hospital, she weighed 4lbs 11 oz and was 17.5 inches long. The plan was for Iley to come home for a couple of months before her first surgery. Iley was not thriving and could not leave, she had her surgery to fix her complete AVSD on June 30, 2011. Surgery went well with mild to moderate leakage in her mitral valve. While she had a couple complications during her recovery she finally came home on July 14th, 2011. It was very exciting to have our girl home and to have our family together! She is a fighter and every day with her is a blessing. Iley came home with a feeding tube which we took out that night because we were determined to have her eat her food by mouth. She had cardiologist appointments scheduled every six months after that. Her first heart echo was around a year after surgery that only showed mild to moderate leakage of her mitral valve(no change). Around six months later she had another heart echo and they found moderate leakage of the mitral valve(worsening) and sub aortic stenosis(scar tissue blockage). The stenosis is causing the mitral valve to leak worse. In January of 2013 Iley had seizure type episode, she then had a MRI and while she was under they did an in depth heart echo and found that the stenosis and mitral valve leakage was getting worse. They presented Iley's case to the U of M team of cardiologist and surgeons and they all agreed to hold off on surgery if she was gaining weight and thriving. Iley was not gaining weight even after upping her calorie intake. This led to a five day stay at U of M in the beginning of May. They did different test and evaluated her to determine that her lack of weight gain and growth was from her heart taking all the calories. Her doctor scheduled her for a hearth cath to measure the pressures in and around her heart. The heart cath confirmed that her pressures are very high and needs to be addressed. Iley's surgery will consist of fixing the sub aortic stenosis(removing the scar tissue), also they will try to repair her mitral valve and if its not repairable if will have to be replaced. Ileys surgery is scheduled for June 14, 2013. Iley is a lovable kid that loves to blow kisses and loves to be around people, especially if they are paying attention to her. She is our life and a blessing; we call her Iley boo. She is our miracle child!