Amelia

Wow. She has Jekyll & Hyde syndrome. But still so funny. On Thursday I was evaluating her behavior and deciding if she would be able to go to swim lessons or not. I told her that I would see how she did in the play area at the club before I decided. When I picked the kids up and asked her how she did, she of course said she did great and "didn't even cry." Then I hear, "No she didn't! She scratched me! Three times!"(Micah). I asked her, "Were you mean to your brother in the play area?" She replies with a solemn, "Yes." Then she puts her hands out in a shrug and says, "Sometimes those things just happen." She did not get to go swimming.

Baby update

We had an appointment today with the Northwest Perinatal Institute at St. Vincent’s hospital in Portland today. First, we met with a genetic counselor who confirmed that the doctor’s believed that our son has bilateral club feet. The purpose of meeting with the genetic counselor was to discuss family history and what other items it might be wise to screen for. The counselor did share that most cases of club feet are an isolated defect meaning that there is no other anomaly present. However, club feet have been linked with Down Syndrome and other chromosomal problems.

We discussed our family histories and reviewed the lab work we had already had done. We opted to have a quad screen done which looks at markers for Down Syndrome and other chromosome abnormalities. According to the counselor we saw, Down Syndrome is the most common association with club feet. A normal negative marker on the quad screen would indicate a person has a 1 in approximately 600 chance of carrying a baby with Down Syndrome. Kandi’s marker came back negative in a much stronger way indicating the chance of our baby having Downs is approximately 1 in 9000. All the other markers were negative as well. These tests do not indicate whether your baby has a chromosome abnormality, only the likeliness of these chances.

We were offered the option of having an amniocentesis which could confirm Down Syndrome or some other chromosome problems definitively. Amniocentesis has its own risks however; the main risk is the risk of miscarriage. The benefit to the amniocentesis is the certainty of diagnosis of a chromosome abnormality. Since our indicators say that is unlikely and there is no possible treatment for chromosome disorders while the baby is in the womb, it didn’t make sense to us to take the even slight risk of miscarriage pending our ultrasound.

Immediately after meeting with the counselor, we had an ultrasound that would examine the baby closely, especially areas of potential concern such as the brain, heart, spine and feet looking for anything out of the ordinary. Immediately after the ultrasound, we met with a maternal fetal medicine specialist who read the ultrasound. The doctor came in and had the technician bring up a few additional views. He confirmed the diagnosis of bilateral club feet. He said it appears that the left foot is not as clubbed as the right, but that it can change as the baby continues to develop. All the other structures on the ultrasound appear normal and healthy.

He agreed with our decision to decline the amniocentesis as he did not see a medical need at this time. He recommended that we have an ultrasound every 4-6 weeks for the remainder of the pregnancy to monitor growth and any new developments. This doctor also shared that he was born with club feet. He provided a referral for us to a pediatric orthopedist who routinely works with children with club feet. We will likely meet with this doctor some time this summer to review the case and discuss the probable treatment plan.

All this to say that we feel very blessed with the test results we received today. Clubfoot is very treatable. We appreciate your thoughts and prayers and encouragement. We’ll continue to update about our baby boy as there is news to share.

"I don't make mistakes"

So many people have sent emails of support and promise of prayer. Thank you for those. On Monday morning we have our appointment with the perinatologist at St. Vincents Hospital in Portland. There we will meet with a genetic counselor and have a high-definition ultrasound. Hopefully they will be able to tell us more details then.

The other evening I had a great talk with my friend Jen whose daughter was born with a couple of birth defects. I would encourage you to read her blog from the beginning (she hasn't had it that long). It was so good to talk to someone who had been through a similar situation. I had so many questions... especially about the possibility of an amniocentesis. Anyway, I shared with her how I kept having these thoughts that I know aren't true, yet I kept thinking them. For example We hesitated about having a third child. Maybe God really didn't want us to have a third, so this is what we get kind of thing. I know it sounds horrible, but I kept thinking it. She told me how she believes that even though we have the ability to reproduce, every baby that is conceived is a miracle and was uniquely designed by God. Last night as I laid in bed I remembered a line from the picture book "You Are Special" by Max Lucado. It is about a community of wooden people. One of them goes to see Eli the woodcarver. Eli says, "You are special because I made you and I don't make mistakes." I kept hearing that over and over in my head. God was saying "I don't make mistakes."