We met the surgeon today that will be performing the surgery on Mia. Dr. Cohen is his name and he seems like good people. I figured I would write down some info that we have as we go along.
A full year of lock down. It is true. Since Mia will have her immune system suppressed, we are not supposed to go into public for about a year in order to try and avoid getting the baby sick. (I am going to need to get a plasma and a PlayStation for sure.) We can go out, but avoid germ infested public. We may be tearing out carpet and installing hardwood to maintain a cleaner environment...my knees hurt just thinking about that project. Maybe one of those air filtration devices to cleanse the air. I was telling Mimi that I was going to set up a booth at the front door that you have to strip down and then it sprays you with chemicals to disinfect. It would be funny to see if anyone took the bait.
No Ronald McDonald House. We are trying to plan ahead on how this is going to work with maintaining job, family and baby in hospital. We are too close for McDonald house free lodging. kids can't stay in the hospital rooms, (and thank goodness for that so we won't be tempted to try it.) We will have to farm out the kids when things are tough, and just make it work. It will just be crazy for a few months
We have been in touch with several families that have gone through this recently. It has been an enormous comfort to hear their story and just to get the ins and outs of what is going to come our way soon. One thing that we were a bit disappointed in was our social worker. Apparently this was going to be the key to making all sorts of things happen. Money was going to start falling from the sky sort of thing. Well, though she is really nice, she had no good leads on financial help other than stuff we mostly knew. This gal from Ohio who's child had recently gone through this had awesome help from her social worker. We will have to find out all the cool programs that are out there and just pass them along to the social worker.
So, the good doctor says that his gut feeling is still to have a heart transplant, but that he is meeting with 50 of his peers on Monday to discuss and decide on the best course of action. The strongest possibility is to put Mia on the donor list 4 weeks before the due date and to do a C-section if a heart becomes available before her birth. This gives us a nice cushion of time when the baby is in a safe environment in the womb, yet available for transplant. The other option is to wait until birth so that the baby can be observed to find out if the heart improves or changes outside of the womb in order to make possible other procedures than the transplant. We shall see. It would be nice to avoid transplant, which would mean no lifelong meds, but it is not likely. The procedure would call for one side of the heart to pump blood to the entire body while closing off the other side. There would be 3 open heart surgeries before the age of 5 and all are about the same risk as a transplant. I don't like the idea of coming back that often. It is encouraging that our surgeon has done over a hundred transplants. He did say that doing a C-section and transplant shortly thereafter has only been done three times in the US to date. Interesting. The great news is that they don't have to have a blood type match because newborns don't have specific blood types. They have markers, but basically size is more important than blood type for a newborn.
We are doing great, and feel more confident everyday. I will update again on monday, the day they take a vote on what to do.