May 16, 2008- 25 weeks 5 days
Today Ashley, the fetal-maternal coordinator at St. Luke's who has been helping us set up appointments and coordinating cares between St. Luke's and Children's Mercy, called and let us know that Dr. Gray wanted us to know about a website for a hospital that does online consultations. She wanted Brian's e-mail address and let us know the website that he wanted us to look for. I went to the website while Brian was at work and was shocked to see what I did. It was a fetal surgery site. Now if I remember correctly the doctors previously said that we were not a good candidate for this kind of surgery. I looked all over the website for the University of San Francisco and found out that they perform these somewhat controversial surgeries while the baby is still inside of me. As I navigated the site further and filled out the online application form which is free, but they charge 575 dollars to process it, and basically you don't know if you are approved or not. Further I would have to stay in California for 4 weeks by myself while they monitor the baby and I! In all this I never saw any statistics about how the survival rate is increased or how the quality of life after birth is improved. Also, I would have to have a Cesarean section because the cuff that they put on the trachea would have to be removed before the baby could take her first breath. This all seemed pretty scary to me, and for what reason. We didn't even really know if Dr. Gray just wanted us to have the information or if he thought that it would be a last resort for us to look into. I called Ashley back after I had navigated the website for over an hour and asked if she knew why Dr. Gray had wanted us to visit the website and she said that she had done some looking on it too and she was confused herself. She said that they had only sent one couple on for Fetal surgery and it was a cardiac patient. She said that she will call me back on Monday and let me know what Dr. Gray's intentions were. So much to consider, but we'll see. The website is: http://fetus.ucsfmedicalcenter.org/cdh/, maybe I just missed where they stated the increased prognosis and odds of survival, who knows.
Today Ashley, the fetal-maternal coordinator at St. Luke's who has been helping us set up appointments and coordinating cares between St. Luke's and Children's Mercy, called and let us know that Dr. Gray wanted us to know about a website for a hospital that does online consultations. She wanted Brian's e-mail address and let us know the website that he wanted us to look for. I went to the website while Brian was at work and was shocked to see what I did. It was a fetal surgery site. Now if I remember correctly the doctors previously said that we were not a good candidate for this kind of surgery. I looked all over the website for the University of San Francisco and found out that they perform these somewhat controversial surgeries while the baby is still inside of me. As I navigated the site further and filled out the online application form which is free, but they charge 575 dollars to process it, and basically you don't know if you are approved or not. Further I would have to stay in California for 4 weeks by myself while they monitor the baby and I! In all this I never saw any statistics about how the survival rate is increased or how the quality of life after birth is improved. Also, I would have to have a Cesarean section because the cuff that they put on the trachea would have to be removed before the baby could take her first breath. This all seemed pretty scary to me, and for what reason. We didn't even really know if Dr. Gray just wanted us to have the information or if he thought that it would be a last resort for us to look into. I called Ashley back after I had navigated the website for over an hour and asked if she knew why Dr. Gray had wanted us to visit the website and she said that she had done some looking on it too and she was confused herself. She said that they had only sent one couple on for Fetal surgery and it was a cardiac patient. She said that she will call me back on Monday and let me know what Dr. Gray's intentions were. So much to consider, but we'll see. The website is: http://fetus.ucsfmedicalcenter.org/cdh/, maybe I just missed where they stated the increased prognosis and odds of survival, who knows.
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