I've decided to start this blog in an effort to keep people updated on our angel Emerson, and also as my own personal outlet. Emerson was admitted to Peyton Manning's Childrens Hospital on January 21, 2009, which happened to be my step-daughter's 6th birthday, via the emergency room, after an echocardiogram revealed an abnormality with her heart. When we got there we learned that Emerson was suffering from a heart problem called Hypertrophic Cardiomyopathy, which basically means that her heart muscles are very thick. At the time of her admittance, Emerson was 3 months old. At birth, she had an echo because of a heart murmur. We were told that it should go away within 6 months. At that time she had no signs of HCM. In 3 months it had advanced from non-existent to very severe. My husband and I were in shock. We absolutely did not expect to hear that. We knew that there was something wrong with her. She had had terrible feeding and sleep issues since birth.
After what felt like a marathon pumbling, and more bad news than we could have ever imagined, we finally met with a geneticist who explained to us that her heart problems, which also consisted of pulmonary and aortic stenosis, were characteristic if certain genetic conditions that they wanted to test for....amoung them, Williams Syndrome.
At first, I didn't really believe that her problem could be a result of a genetic syndrome. After my husband and I did some research on WS, we both agreed that Emerson really fit the profile, especially with her colic, feeding and sleeping issues, and heart problems. After almost 2 weeks in the hospital, so many tests, and surgery to have a gastric feeding tube and nissen (to prevent acid reflux), we finally got to go home. A few weeks later, we got the call telling us that Emerson tested positive for Williams Syndrome. By this point, my husband and I had plenty of time to get used to the idea so we weren't really shocked by the news, more glad that she had a diagnosis.
This has been a few weeks ago and we are all still trying to adjust to everything. It is much more difficult than I imagined, but I know that our daughter is strong and can overcome anything. Her heart condition is extremely rare in infants and is in a very severe stage. It is all up to her body to heal itself now, so we are keeping our fingers crossed and hoping our angel will pull through so we get to meet the wonderful person that she is destined to become.
In the past weeks and the weeks to come, we have had many appointments with many different doctors. We followed up with our cardiologist, who said that Emerson's heart hadn't gotten any worse since she left the hospital, which was very good news. He also said that if her heart condition is a direct result from WS, then she had a better shot at recovering from it. We are still waiting on the test to determine if it is from the WS or not. We've seen her primary pediatrician several times, a gastroenterologist, genetecist, and are getting ready to follow up with her surgeon and endocrinologist. Wish us luck, and I will continue to keep everyone updated on how Emmy is doing!!