Bad News Today

I don't have the energy today to write everything, but I know several people were aware of our second echo today and wanted to know how it went. The news was very bad. Although Annie does not have any visible symptoms of heart problems, she indeed has severe cardiomyopathy (weakening of the heart muscle). The doctor doesn't know what is causing it and seemed dumbfounded that we went from a normal echo after birth to a severely abnormal echo today. We started a series of blood tests today (after opting not to admit Annie directly to Children's) that will continue on Monday. We will probably be admitting Annie to Children's on Monday and we were told to expect that she will need a cardiac catheterization sometime next week. The best case scenario would be a treatable metabolic disorder that would resolve with medication. In some cases, the myopathy is idiopathic and runs its course. In other cases, more drastic intervention -- like a transplant -- is a possibility. We just don't know anything at this point. She starts heart medication tonight to help her heart work less hard. We should start to know more on Monday as lab results start coming in -- and they're able to take more blood for more tests. It was all we could do to get through blood draws in both arms tonight ....

Please keep our sweet girl in your thoughts and prayers -- once again -- as we go down this road with her. Thank you!