We reported to St. Vincent hospital today at 11 a.m. for Lexi's pre-op appointment. She had an EKG and an echo. Dr. K showed us the hole in her heart on the monitor and describes it as "moderate" in size. It's always been described as large before, so moderate is fine with me. The nurse practitioner spent lots of time answering questions and giving us info. We can feed her up until 3 a.m. tonight which is a huge relief to me. Alexis is always asleep by 9 p.m. and sleeps until at least 6 a.m., but I'll be happy to wake her up for some extra feedings if that will help her out tomorrow morning. We have to be at the hospital by 6 a.m. We met Dr. A for the first time and he will be the one performing the surgery. He discussed the risks. Not fun to hear. There is a 2% chance that she wouldn't make it through the surgery. The number might seem low to some, but when you figure that we had a 1 in 300 chance of having a baby with Downs...2% is not comforting. Not at all. But I still feel like she will be fine. We signed all the consent forms. (Paperwork for refinancing the house was nothing compared to this!) Alexis will have to receive a blood transfusion during the surgery. It's possible that they will have to put in some pacemaker wires. There was lots of stuff that made no sense to me, but I have a hard time taking my mind away from that scary statistic the surgeon mentioned. Everyone has said the surgery will take 3-4 hours. The surgeon predicted 2.5 hours. Everyone has said Alexis will be in the hospital for 7-10 days. The surgeon said a week, give or take a day. She will probably have her vent in over night. She will be heavily sedated for a majority of the first day.
We were then walked over to another area of the hospital for more paperwork. We walked a far way to get a chest x-ray, walked back to where we had filled out the paperwork, and then walked to the Children's hospital for a blood draw. I told them I do not want them trying to get blood from her heel. It never works and they end up having to put in a needle. So they did the needle instead. My poor baby. The turniquet really hurt her and then the first needle didn't cut it, so they had to start again on the other arm. And then they had to keep pushing the needle around in her arm to get the vein. My poor baby just screamed. I wanted to do the same, but held it together. I just keep thinking how I can't imagine going through all of this with a toddler or older child. At least Alexis will remember none of this.
3 1/2 hours later, we were on our way home. Ugh.
Now, on a lighter note: My aunt had heard of a website that is used for blogging when people have medical things going on with them. I just signed up for it to keep people updated on Alexis. I will cut and paste exactly what I'm writing on this blog but you may want to try the other site because a) I don't think you will have all the difficulties with making comments and b) you can subscribe to that blog easier and if you want to enter in your name and e-mail (under the "guestbook" tab and check at the very bottom that you want to receive updates), you will get sent a notification every time I update it. Just thought I'd try it to see how it goes. I will limit the new blog to only updates on Alexis, so you may want to continue checking in here for additional pictures or any news not related to Lexi.
The website address for the new blog is: http://www.caringbridge.org/visit/alexis2009
or you can go to www.CaringBridge.org and enter in the website alexis2009