Emma’s geneticist called me personally today. He said that Emma’s FISH test (the second blood test) came back with nothing remarkable. The skin cells (we had asked them to take a skin sample the day of Emma’s death and send it to the genetics lab) did not grow so that test was unsuccessfull. So basically that is all the information that they will be able to get. He hadn’t changed his opinion that there was a genetic problem, but since they don’t know what it is, they can’t give us a good percentage of how likely it is to happen again. His two words of advice were to be on prenatal vitamins (including folic acid) even now since pregnancy often comes as a surprise and if and when we did get pregnant to go get a level 3 ultrasound done at UAMS in Little Rock (the ob side of children’s hospital). They should be able to examine the heart closely and see if there are any abnormalities and if there are compare them to Emma’s heart. If they are similar, they will assume that the new baby would have the same problems as Emma. I know that most doctors at that point would give us the option then to terminate the pregnancy, and I have already made it clear to the geneticist that that is never an option for us, but he still felt that it was good for us to have the information to be prepared. Also if there are no heart abnormalities I would be reassured of the health of the baby.
We also discussed a little of Emma’s death. His opinion was that it was unlikely to be just the flu that caused it as those deaths normally occur at the beginning of the flu cycle, not the end. He said she could have just forgot to breathe (apnea spell), which seems unlikely to me as she had never stopped breathing except maybe once the first day after her birth or on the ventilator (which doesn’t count). But I did agree with him that his main suspicion would be her brain stem and whatever was going on there. That makes sense to me, but in a way scares me a bit too, as that means if I were to have another baby with Emma’s same genetic problems that means the heart issues could be fixed, but not necessarily the brain issues.
In other news, I started packing away some of Emma’s things today. I haven’t wanted to, but now the plans for what I could use the room for are starting to overwhelm the desire to keep it a nursery. Plus, it is painful to be in there now, and I think slowly putting it away will help to take some of that pain away. I had wanted to do it all myself, but decided on the spur of the moment today to let Elise come help me with some of the toys. It gave me a chance to explain to her again why Emma won’t need the toys. We talked about how some of her things are going into a special box that will always be Emma’s stuff for us to look at and remember her, and the others are going into boxes for if we ever have another baby brother or sister. That brought up an interesting comment from her. She looked at me and said “But you have a boy in your tummy, right?” It took some convincing for me to explain that no, there is no baby in mommy’s tummy right now, despite the fact that it is still a little big. She had to feel it and I tried to explain how mommy will get skinny again, but that sometime God may put another baby there. Apparently she is wanting a brother.