His journey never ends

Tonight as I prepared all of Xavier's medical records to give to the pediatrician tomorrow for his late 6 month check up, I re-read the paper I recently received in the mail from Boston Children's Hospital from the day he was evaluated.  I briefly skimmed it prior to tonight because I was right there involved in his check up that day.  I assumed that it wasn't going to say anything different or new than I had heard that day on August 15th.  To my surprise, and I was extremely surprised and shocked, to read that during the echocardiogram they had found Xavier to have BAV (bicommissural (bicuspid) aortic valve).  NEVER was it mentioned to me in the 4 echocardiograms he had at Pittsburgh Children's Hospital nor was it mentioned after his sedated hour and a half long echocardiogram done at Boston Children's Hospital.  How, after all of these cardiologist look at these tests either not see it and when they do fail to mention this VERY important information about my son who has CHD and labeled "failure to thrive"?  My heart breaks for my little guy!  There can possibly be more wrong with his heart?!?!  I am fully aware that there are children out there with more severe heart issues as well as other issues, so I try to keep things into perspective.  But honestly, does it ever end with him, does it ever end in my family!?!?! 
I have been doing some research of my own to figure exactly what BAV is and what exactly this means for Xavier.  One article of research stated "Individuals with BAV should be carefully monitored for evidence of aortic dilatation and valvular dysfunction."  How can the cardiologist at BCH tell me that Xavier doesn't need to be seen for a full year?!?!  I am extremely thankful that tomorrow Xavier will be seen by his new pediatrician and I will get to speak to them more extensively about what this all means for Xavier.  In the mean time I did find a medical article and a picture that explains everything very well, so here is the link if you are curious: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004578/ .
What did I do wrong in my pregnancy that didn't allow Xavier's heart to form correctly?  What could I have done differently.  Part of me thinks this is all my fault, but I know that his formation was in God's hands and he made him special for a reason.  Psalm 139:14 "I am fearfully and wonderfully made".  That is the plaque that hangs on Xavier's bedroom door.  It was given to me by my mother before he was even born! He has a wonderful testimony someday to share with others.  Maybe one day he himself will be a great cardiac surgeon or cardiac doctor!  He is such a strong fighter and amazing little boy!  I am so proud and thankful I can call him my son!  I LOVE HIM SO MUCH! 


His face brightens my day! :)