Letter Thirteen

April 18th, 2007

Mom, 

Thank you for being here for me today. Everyone has finally left Noel’s hospital room and now it’s actually quite. It has been a whirl wind of a day. Today was the hardest day of my life so far. Having your little baby go into surgery is so stressful. I know that having the g-tube is going to be best for Noel so that she can finally get all the nutrition she needs. It’s been a hard choice to make, but seeing her sleeping soundly and getting feed without her having to do so much work gives me a lot of peace. I’m hoping that now we won’t have to have out life consumed with feeding difficulties. 

I am worried though about the muscle biopsy, the doctor did today. They said they normally wouldn’t do it on Noel since she is so young, but since they were doing surgery anyway they might as well get this done while she was under anesthesia. They haven’t told me what the results of her muscle biopsy could be. They said it’s because there are too many possible diagnoses that they don’t want me to get overwhelmed. They also said parents tend to go research the worst possible condition and that would  just create fear and cause me to be overwhelmed. 

On one hand it would be nice to have a diagnosis so we finally know what the heck is going on. But I also don’t want to give up the hope that nothing is really wrong and she’s going to grow out of all of this. It’s such a challenging position to be in; to want to know what is going on, but to also be sacred of the possible diagnoses. I know we can get through anything, I know I am strong and so is Noel. 

Well I’m gonna crawl into my little sofa bed under the window in Noel’s room and try to get some sleep before the night nurse comes in to check Noel’s vitals. I love you mom so much. I will see you in a few days when Noel get’s discharged. 

Love, 

Tina