We're Back, Part 1--The Medical Aspect of the Trip

Well, it was a whirlwind trip, but it ended with good news.

Dr. Crumbleholme's best prediction is that Thor will be in that category of babies who can be delivered vaginally, will be able to breathe on his own, and won't need the surgery until he's 2 or 3 months old! We were so relieved that when we left the conference room, I cried. Zach slept better last night than he has in awhile.

Here are some of the medical details of our trip to Cincinnati Children's Hospital.

First thing in the morning, Thor and I had an MRI. That took about an hour, then we met with family support--the chaplain--and a nurse midwife. Then we waited for a long time and had our ultrasound. The ultrasound also took about an hour and then we had lunch followed by an ECHO--an ultrasound to look at the baby's heart.

After the ECHO we talked briefly with a cardiologist and then waited while the Fetal Care Center doctors looked at everything and made their assessments. Then they called us in to the conference room, showed us the images, and explained their thinking.

It was really fascinating to see the MRI images. They are incredibly clear compared to ultrasounds and we could see the CCAM much more readily. It was scary. It is huge. There were a few things that Dr. C told us that we didn't already know.

For one thing, Thor's heart is a little smaller than normal, perhaps due to compression, but they are not at all concerned about that. Additionally, the abnormal flow through the ductus venosus that our docs in Evanston were seeing is probably not actually happening--which is good news. Dr. C thinks they're picking up on the flow through another vessel that is very close by, which makes it look like the blood is sometimes flowing the wrong way.

Also, the tumor is bigger than the way they've been measuring it here. Dr. C said the CAM Volume Ratio (CVR) was 1.7. Last Thursday's CVR in Evanston was 1.2. 1.7 was the biggest number we've heard yet. The reason he got a bigger number is because there's a part of the CCAM that juts out behind Thor's heart, which he thinks they're missing in Evanston.

You may recall that if the CVR was bigger than 1.6, that was bad news, but that is not the case anymore. They've done all these studies which have concluded that if the CVR is bigger than 1.6 at presentation (which is pretty much always at the 20 week ultrasound), then there is an 80% chance the baby will develop hydrops (fetal heart failure). If the CVR is less than 1.6 at presentation, there is a 95-98% chance that the baby will not develop hydrops and will therefore not need the fetal surgery. What that means is that since we are past the "at presentation" period, it's normal for the CVR to get bigger rapidly before hitting a growth plateau. Dr. C said he knows it looks scary as the CVR reaches 2.0 and 2.5, but that those numbers don't necessarily mean the baby will develop hydrops.

Thor's tumor will likely continue to grow for the next 4 to 8 weeks and then plateau. After the growth of CCAMs plateaus, Dr. C has never seen one start growing again. He thinks that Thor's CCAM is growing less quickly than many he's seen, and that even though it looks so big right now, by 32 or 34 weeks, Thor will have grown enough that the CCAM will only exist in one side of his chest (right now it's pushing things to the left), his heart will be in the right place (right now it's left of where it should be and turned a little), his trachea will no longer be blocked (right now you can't even see where his trachea is), and that he will be able to breathe on his own when he's born! Halleluiah!

We asked Dr. C what would make him declare that the growth of the CCAM had plateaued. He said 2 weeks of CVRs getting smaller or staying the same. If you've been paying attention to the numbers we've been getting in Evanston, you know that for two weeks, they've been getting smaller. I asked him why he doesn't think our CCAM has plateaued based on our numbers and he said two things: our numbers may be inconsistent because various people are measuring it differently and it's too early for the plateau. The average plateau happens around 26 weeks. The earliest plateau Dr. C has ever seen is at 23 weeks, but I wonder, in hopeful optimism, whether this isn't God's answer to all of our and your prayers. Perhaps His miracle here will be the earliest growth plateau that Dr. Crumbleholme has ever seen!