Extension of Worry

Zach took this morning off of work to come with me to a big appointment today. We had a more in-depth (level 2) ultrasound, a regular office visit, and a consultation with Evanston's pediatric surgeon, Dr. Jona. Everything went spectacularly, including the biggest change we've seen in the CVR in months--and in the right direction! It's been really holding steady at 1.9 or 2.0 for the last few weeks, but today it was 1.6! We felt so great about that! We're thanking God and praying that the numbers continue to shrink.

Also, the ultrasound was so fun. Thor is in the 66th percentile for his gestational age, so he's got some catching up to do if he wants to join his brother in the Way Above Average category. Really, though, 3 pounds 8 ounces at 29 weeks is the perfect size.

As usual, Thor was having a dance party in the womb and has apparently become well known for his moves. Dr. Jona called him the Roadrunner. We also got to see him full on performing in other ways. He was doing a bunch of "practice breathing" where he exercises his diaphragm and helps his lungs develop chemically--so we were definitely cheering that on! He also had his eyes open and we could see him blinking and looking around! They used to think babies didn't open their eyes in the womb at all, so it's pretty amazing to be able to see it now. And he was yawning, sucking, and sticking out his tongue like crazy! It was so cute! I hadn't seen him doing all of those things yet, so I was so glad Zach got to be there to see it too. He was really hamming it up today.

Anyway, then we met with the pediatric surgeon and brought a huge list of questions with us. He seems very knowledgable and did a good job of explaining everything to us. He had seen a previous ultrasound but he wasn't sure when the images were taken. He said several times how serious and scary things looked on those earlier ultrasounds and used the phrase "That's what kills the baby before he is even born" a couple of times. BUT he also said we got really good news today and that we should celebrate.

The title of this post, Extension of Worry, refers the fact that Dr. Jona didn't do much to calm my fears about how life will be after Thor is born. He prefers to do the surgery as late as possible while still giving the baby's lungs time to compensate for the empty space that resecting the tumor will create. According to the 10 or 12 CCAM babies that Dr. Jona has seen per year in his practices at Evanston Hospital and Children's Memorial, about one in about 20 babies are symptomatic and need to have the surgery right away. For the other 19 in 20, he likes to wait until they are 10 to 12 months old! So in that 10 months or so, we have to watch Thor closely for signs of respiratory distress...

You know how new moms do that thing where they check to make sure their baby is still breathing in the middle of the night? Moms of healthy babies do that...

I do feel good about the surgery itself, though, as well as Dr. Jona as our surgeon. Dr. Crombleholme from our consultation out in Cincinnati had given us some questions to ask of pediatric surgeons to rule out anybody who doesn't know what he's doing. Dr. Jona passed those with flying colors. And it seems that this surgery's only risks, especially if it can take place later in Thor's first year, are those associated with any other surgery of this magnitude.

There are tons of details that a select few of you will want to hear, but for now those are the highlights: Thor is doing great and I am going to be a worried mess from February to December next year. Keep those prayers a-comin'!