Tuesday, June 10, 2014

Fontan this summer


I would like to say I'm a realist. I know that Raygen has half a heart. I know that she has to have surgery again for her to continue to live and thrive, but it still doesn't hit me till I hear the doctor tell me. There will be no waitin...g till next summer. Surgery will happen within the next couple months. There are no words that describe how I feel. Scared and terrified doesn't even do my feelings justice. When I was pregnant and they told me that my daughter could live with a 3 stage surgery I was grateful and I am still amazed how medical technology has come so far and that is the whole reason I have this wonderful girl right now, but it doesn't make it any easier. The first surgery I was so scared because I didn't know my daughter, she was 6 days old and she didn't know me. The second surgery she was almost a year and the fear set in more because at this point in her life we were finally being able to bond like a mother and daughter. Now the Fontan at 3. We have this bond that is beyond amazing. I know her like the back of my hand. I know her likes, dislikes, her wants and when she wants things, how she wants them and at night when its bedtime and we just cuddle and hug till she falls asleep in my arms is what I look forward to everyday. I know we have an amazing God and he will keep her safe, but she is my life. Both my girls are my life and the thought that Raygen will have to undergo another major open heart surgery this summer takes my breathe away. Now we wait. The surgeon will call us and set up a meeting to discuss Raygen's heart and then we pick the surgery day. Days where I just want to forget and enjoy my daughter and not stress about surgery after surgery are hard to imagine. I don't know what's worse: waiting to schedule the surgery or having an actual surgery date. One day at a time, right?