Welcome to our life



Sophie at 5 days old

Hello! Welcome to our story! My #1 goal in creating this page about our family story is to give a positive look on what we have gone through with our baby Sophia. At birth she was diagnosed with Tetrology of Fallot, a heart defect that required open heart surgery this past August to correct when she was just 3 months old. At that time she was also diagnosed with Digeorge Syndrome. As I googled these diagnoses, much against the advisement of doctors, I found myself on many pages that showed the scary and negative side of these issues. If you have found my page because you were looking up either TOF or Digeorge I am here to share our beautiful, perfect baby girl with you and show you that hearing these diagnoses does not have to be a scary thing.

Sophie at 3 months old

I know some people hear this kind of news while they are still pregnant if it was picked up on ultrasound or genetic testing. I cant imagine what they must go through hearing this before they meet their precious baby. I know how emotional I was when I was pregnant! I am thankful that we did not know until after she was born. Nonetheless it is a difficult thing to hear. It broke my heart to see some people on message boards considering abortion when they got the news, however I can understand the fear that they must have. I just wanted to jump through the computer and show everyone that this is all fixable and does not have to change your child's future in anyway. I have proof right here in our beautiful baby girl who is developing normally and so happy every day! Are there things you have to maintain with Digeorge like calcium levels and potential infections and such? Yes. But the way I look at it is that's just part of being a parent anyway. You do what your child needs and you don't think twice. Did she have to have open heart surgery to repair her heart? Yes. But it is fixable! And that is the blessing! Toady's medical technology is truly amazing!

I know that there are varying degrees of Digeorge Syndrome. Sophie has a partial deletion, not a full deletion and she produces the T-cells she is supposed to. They just didn't happen to find her thymus during her heart surgery and that led them to the genetic test. The scariest thing is not knowing the degree your child will have. They list every possible problem when you look up the pyramid called Digeorge. I mean its like they covered every base when they created this syndrome! But don't look at that list and think your child will have everything on it. In fact they may only have 1 thing on the list! And if they have more, there is a specialist or Dr. who can guide you through each and every one of them!

Anyway, I will post a more detailed blog about our experiences with the heart surgery and Digeorge Syndrome later if you are interested please read them. I will also be sharing the fun moments of our family as well. I am new to this blogging world, its kind of like a new age scrapbook of our life so I am excited to document it for our family and friends to see!