Tired Girls and a Tired Mommy

Running errands wears Lilly out!

What a day today was. I would have thought I was prepared for the news we received but I wasn't. Our appointment started with an ultrasound. It was done by a technician and a Doctor. Both were very thorough. They spent well over an hour looking at our little guy and ended up with a pretty long list of problems. In addition to the things we already knew about, his kidneys are enlarged and it looks as if he has an extra little finger. I thought that was interesting because on one of the pictures Fetal Fotos gave us it was a perfect picture of one his hands and I showed Kevin, telling him that he looked like he had 6 little fingers.

After the ultrasound the Doctor explained that everything he was seeing pointed toward Trisomy 13. I asked him about the blood test that came back negative and he said it only screens for Trisomy 21 and Trisomy 18. He then shared the results with my Doctor, Dr. Byrne, and she agreed with his findings. We spent the rest of the time talking with Dr. Byrne. I really liked her. She is also a Geneticist, which I wasn't aware of until today. She has had plenty of experience with Trisomy 13 and was able to answer all our questions.

My answer to What looks right with our baby? wasn't at all what I was hoping for. Really the only things she could tell me was that his spine looked good, his feet, and for now he does look to be the right size for a 22 week fetus. I asked what we could expect from here out. Some Trisomy 13 babies do make it pretty close to full term but not many. It's rare but a few who are born alive do live but she's never seen a Trisomy 13 baby with both the brain issues and cleft palate like ours live more than a few hours. Those without the brain and cleft issues that live are still severely mentally retarded. She kept using the word "fatal" in conjunction with Trisomy 13, which was of course not what we were hoping to hear.

Kevin was concerned about my health and if there would be additional complications with me. There is a higher risk of Pre-Eclampsia so that is something we'll want to watch for and be careful of. If it becomes a problem we'll need to induce labor and deliver right away.

All of their findings today is basically the same things we were told with the first specialist we saw but I guess all that has gone on in between led me to think maybe we were headed in a better direction. My friend asked me how I was doing with this news and I didn't even know how to answer her. I feel so emotionally tired and worn out. Even though I trust in God's plan for this little guy and for our family, today's news brought a new wave of emotions--and I haven't been able to even start to sort them out. I guess that's just part of being human and a mama :). For a mom who was never going to have babies closer than 2 1/2-3 years apart I am feeling very grateful for my sweet baby Lilly (Lilly and Kevin would be 15 months apart). The idea of coming home from the hospital empty handed is something no mother ever wants to experience but I'm blessed to still have a baby to come home too.

I'll go back to see Dr Byrne in a month and then it will be every 2 weeks. In the mean time we just keep doing what we've been doing, taking things one day at a time. My sister Tricia told me about a great website she found www.livingwithtrisomy13.org. From what she says it sounds like a helpful online "support group" for families. I'm glad to know about that. I'm not ready to look at it yet but I think I will eventually.

Emmy went to her room after dinner--said she had lots of homework. An hour later this is how I found her.