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Surgery date 8/20
Daddy making Evie smile.
I feel like the little boy who called wolf. I have said she was having surgery on so many days that I can’t even remember which dates were said now. But is official, Evie will NOT be having surgery tomorrow. There were many factors that came into play with us waiting until next Tuesday. These decisions are so hard. When you have a heart baby, especially one from China with a defect that hasn’t been corrected, it is very, very complicated to say the least. There aren’t a lot of these children around. There are no studies on the best way to do things. There are no big studies showing what your babies outcome will be.
Take for instance, Benjamin, had he been born in the U.S., he would have had surgery in the first few weeks of life and if all had gone according to plan, he would have gone on to live a normal lifespan. Instead, he has to undergo a very risky surgery with a success rate that is unknown.
There was a new article out on CNN where they investigated a hospital after some babies deaths. If you know of a family that is having a baby with a congenital heart defect, please pass on this information. Your babies best chance of survival is going to a facility that has a large volume of children that they care for with the same defect along with a great survival rate.
With regard to Evie, we had two options.
Option one was to do surgery tomorrow knowing our doctor was going to be out of town the very next day until Monday. This is not something we wanted to risk. If there were any complications from her surgery, he wouldn’t be here to fix the problem.
Option two was to wait until next Tuesday when the surgeon returns. This option brings along with it the worry that we really don’t know what brought on her episode last Friday. We think it was due to the high crit and was added to by the extra fluid from the cath along with the contrast, and her little body just couldn’t handle the change. These China heart babies are very, very sick and in Evie’s case her body has figured out how to survive with very little oxygen to her lungs.
I’m not sure I am happy with either option. I don’t want to wait for fear something will happen, but I don’t want to have surgery for fear there will be complications. So I guess, surgery will proceed next Tuesday.
Evie will be having a central shunt placed. There has been some talk about moving straight to the Glenn procedure, but it has been proven over and over again, with these heart babies that haven’t been corrected, that you need to take it slow, give them time to grow, and then proceed. Our surgeon was trained at CHOP and is very skilled in doing the shunt. We know she will be in good hands.
She had a pretty good day today and spent most of the day recuperating. She isn’t really drinking and is still not back to herself, but we are hoping by tomorrow we can go to the general floor.
Evie showing us what her cath showed.
Thank you so much for your concern and your prayers for Evie. Please include Zach and Cassie along with Mema who are trying to hold down the fort and for our other little ones who just don’t understand what is going on. I’m thankful that we have older children who are so willing to care for the younger ones. Zach and Cassie are there to comfort them and to keep it as normal as possible at home. We have always had this debate. Should both Dan and I be at the hospital? I want to be here to mommy my babies and Dan needs to be here because he has the medical background and I could write a book on how many times he has saved our babies from some mistake or some procedure that didn’t need to be done. Zach and Cassie make this possible and I am so thankful and blessed that they would choose to do this.
Mommy getting to old Evie after she was extubated.
