Perinatology

I wasn't able to sleep at all last night. After several people asked me if we would consider termination, the thought wouldn't leave my mind. I don't know what the "right" decision is. How do you even make a decision like that? The questions kept coming into my mind. Would we be saving our baby from a life of pain and suffering? Would it be easier on our children? Could I even live with myself? What would our "Christian" family and friends think? Is it against God? I cried almost all night.

Morning came. Sometimes when tragedy strikes you think time should stand still. But it doesn't. I am still mom and have work to do. I had to get Austin ready to go to school, get breakfast and get Emma and Kadin ready for the day. We decided not to tell the kids that the baby is sick yet. We want to get as much information as possible first. Grandma is coming to the house to watch Emma and Kadin for us.

Karen called this morning to check on me and I was able to discuss my night with her. She didn't judge me for my thoughts or fears. She didn't try to make the decision for me or persuade me into a particular decision. She was just a comforting friend. She told me that she would support us and help with any decision we made.

On the way to the appointment this morning Kevin and I had a great opportunity to talk. He told me that he didn't want to end this pregnancy. He loved and trusted God and he knows that this baby was meant to be. I felt so relieved. I knew instantly that we made the "right" decision for us. We also decided that we would have an amnio done. Even though we know that we are in this for the long haul we need as much information as possible so that we can make informed medical decisions.

We started the appointment with a level 3 ultrasound. We told the tech that we already know that there are a lot of problems with baby and asked him to tell and show us as much as he can. He showed us our baby's VSD and omphalocele. We loved seeing our baby again. To us it looked like a normal healthy baby. It was active and seemed to be doing well. Of course it wouldn't cooperate and turned so they couldn't tell us if it is a boy or girl!

During the ultrasound a nurse practitioner and councilor, Carole, came in to talk to us. She asked how we were doing and talked to us about our children. It felt wonderful to discuss my feelings with her. She told us that when we tell our kids we needed to be sure to tell them that even though their brother or sister is very sick, I am healthy. What great advise. I didn't even think that they might get scared about my health.

Next we had a consult with Dr Dashow. He told us that our baby has several problems that are a major concern. He has a large VSD with his heart at a 70 degree angle, a small omphalocele, and problems in the brain that might include a dandy walker malformation. He also told us that baby has some other minor problems. A 2 vessel cord, it is small at the 11th percentile, and some measurements are off. Baby weighs 5 ounces today.

He explained that it is very likely that our baby has Trisomy 18. The only way to accurately diagnose T18 is with an amnio. If it is T18, our baby has a 90% chance he will pass before he is born. If he lives through delivery he might live minutes, weeks, or months. Unfortunately no physician will be able to give us an accurate estimation of his life on earth.

Then it was time for the amnio. I was a little scared and Kevin was great. He held my hand and spent time talking to me. I was thrilled because it was quick and not very painful, in fact, it hurt less then a normal injection. They told us that we could have preliminary results ( FISH results) in 3 days. Although the FISH is not the final result, it is very accurate.

Now we have to wait. We know that our child is very sick. Regardless of the amnio results he/she will never be a normal healthy child. The problems with the heart and stomach might be able to be corrected surgically but his/her brain is not normal and will not be able to be fixed.

We are spending time in prayer. But we don't know what to pray for. We know that God has given us a very special child. One that we love as much as our others. Should we be praying for life...because, of course, we want our baby with us. But that feels selfish because we want our baby to be able to enjoy life...not just have it. Do we pray for the end of its life...?? How do you pray for the end???

Mostly we are praying for Gods will to be done not ours. He knows what the outcome will be even if we don't. Right now we need his for strength to get us through the days to come. We take comfort in knowing that he will be carrying us through this entire journey and will do what is right for us.