sucks.
This morning, we had a photographer from Now I Lay Me Down to Sleep by to take pregnancy pictures. It was very hard for the both of us. It made it all seem much more immediate and real.
This last week has been punctuated by tears. We've spent a lot of time just being together. B hasn't been into the office in over a week, and won't be going back until next week. He's been a little worried about taking so much time off (he's been working from home part-time), but his boss has been very supportive through this. I know he needs to go back to work for the distraction, but I'm just a bit worried about what I'm going to do with myself while he's at work. I have no distractions.
I do have to say that we have received an outpouring of love and support from our friends during this very difficult time. I know there are many people out there who do not understand our decision, but we have been blessed that none of our friends or family have made this situation any harder than it has to be for us.
I've been doing research, trying to find information on the long-term effects of this defect. The information is, not surprisingly, difficult to come by. It is such a rare defect with such a high mortality rate that there are more questions on quality of life issues than there are answers. I did find a small study done in Sweden, which reached the same conclusions we had... "With regard to psychological well-being, quality of life was significantly lower... than in healthy controls." I read through the entire study, and it really helped me make peace with this decision. I will never be happy with it, I will never feel good about it, but I have reached peace that it is the best decision for all three of us.
We have volunteered to participate in a research study currently being done at Baylor into the genetic causes of this disease. We have also been offered a chromosomal study and echocardiograms for ourselves to rule out possible contributing factors. We know that our chances of having another baby with this defect are around 0.5%, and the chances of having one with any heart defect are around 2.5% (the chance for an average couple is ~1%). There is nothing we can do to cure the defect in this baby, but we hope we can somehow contribute to the knowledge that someday can help prevent it in other babies.
I pray that small bit of hope gives me some comfort in the tidal wave of grief I know is to come.
