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."

News

Today I received a call from my OB who said she had looked over our ultrasound pictures carefully and is pretty sure the baby has club feet. She has referred us to a perinatal specialist where we will have more extensive ultrasounds to figure out the severity of it. From the little research we've done it sounds like the baby would be having weekly casts for the first 6 months or so and then maybe a minor surgery. We would appreciate any prayers you could send up for us. It's interesting... we're not worried. I feel a supernatural calmness about it (which is so not me). Ryan and I were talking today and both said that we feel an extra special connection to this baby somehow.

Knowing this will be our last child, I've been excited at the thought of getting rid of baby things once we're done with them and looking forward to the "big kid" stage. However, I find myself grieving the loss of teeny robeez shoes and footie pajamas. Oh well, there are lots of cute onesies out there (he'll most likely wear those for the first 6 months.

In other news, Ryan and I celebrated our 9th wedding anniversary on the 24th. Every year he buys me one red rose for every year we've been married and one white one for the year to come. Isn't he romantic? I know it's coming, but it always surprises me. They are beautiful.

Behavior boot-camp has been going well. The kids love the schedule and I'm having a much easier time.

Funnies

Amelia got a new back pack that has wheels. The other morning she asked, "Mom, where is my roller-coaster pa-pack?"

The other day we went to see the "reptile lady." The kids were sitting pretty quietly and at one point Amelia leaned over and said, "Mommy, can I give my mouth a cough?" I said, "If you need to cough, honey, its okay." She proceeded to cough (a real one, not just a fake I wanna cough cough).

Today I was bending over and tying my shoes when Amelia said, "Mommy, I tink you are (s)quishing the baby."

The Summer Abyss and Behavior Boot-Camp

Those of you who know me well, know that I struggle (I could even say dread) summertime. Don't get me wrong, I love the sun and I do LOVE my kids. The problem is, I have trouble when I don't have a schedule. You may not be able to understand this, but it scares me. However, after 8 years of teaching I'm putting my skills to good use to help myself and my children cope with and maybe even (gasp) enjoy this time. Tonight I made schedule cards to rearrange each day so the kids (and I) know what we are doing (They were very excited about this). On the left is a sample day and on the right are other activities to add into the day. It also helps that I'm teaching swimming again this year at the club so that gives us an outing every day from 10ish to noon (and the kids get swim lessons). I'm really excited about this new plan. Having said all this, I so wish that I was like my blog-friend Allison who gets giddy every moment she gets to spend with her kids. But, thats another one of my guilt-complexes that I'm working through.

Behavior Boot-Camp: I've decided to crack down on the whining, fussing, bickering and tantrums that have been happening around here. For miss Jekyll/Hyde aka. Amelia, I printed out some pictures of things with their corresponding consequences so she can have a visual when she is having trouble with her tantrums and following directions. I forget how much pictures help kids.

On another note, Amelia was so proud of herself because she got dressed all by herself this morning. Here is what she looked like:

Amelia's new haircut