Monday, July 13, 2009

Day 1: So far so good

We've had a VERY full day, but everything is going well. Yesterday morning we dropped our kids off (thanks so much to everyone who has been and will be watching them for us!), which was tough as expected. We've had a few abbreviated conversations with Damon on the phone since then, and we hear Audrey mustered a brief smile when she heard us through the phone, but of course we miss them terribly.

We landed in Oakland yesterday afternoon, and had dinner with some friends from law school. It's nice to have friends in the area. Our hotel is in the Marina district, about a 15-minute cab ride from the UCSF hospital.

So here's what we've learned today: after doing yet another ultrasound, they confirmed pretty much everything is still as it was at our last appointments in Houston. The best news is that there is still no hydrocephalus. The ventricles are only at 6 (left) and 7 (right) mm, which is great -- up to 10 is still considered in the normal range. This can of course change in the future, since they confirmed yet again that she does have the Chiari malformation; but the longer it stays normal, the better for her brain development. More good news is that they did detect movement in her hips, knees, and ankles. That may change as well, but for now, she still has at least some mobility. They confirmed that the lesion starts at L2, as we already knew, and they believe it extends down to S1. The placenta is in a posterior position, which will makes things a lot easier for the surgeons if we do get randomized into the prenatal surgery group, since they would not have to try to move the uterus as much in order to reach the baby. They also confirmed that she does not have any clubbing of the feet. They also did an ECHO and confirmed that her heart is normal. All in all, this means that we are pretty much still on course to qualify for the trial. We recognize that something unexpected could come up tomorrow during the MRI, but for now, it looks like we will probably qualify.

When Shelly's tummy wasn't covered in goo, we were meeting with lots of people who will be involved -- the perinatologist, anasthesiologist, neonatalogist, social worker, two fetal surgeons, and a nurse. They were all so helpful and informative, and we feel like we would be getting excellent care if it all works out. Before coming today, we had that anxious, gnawing, butterflies-in-the-stomach feeling about this trial, but getting the information download from very experienced experts talking face-to-face with us has really calmed our fears. It's still extremely scary, but it's much better now that we understand how it will happen. It's still crazy to think that Shelly might be going into surgery on Thursday, but we feel like God has answered our prayers for comfort through everything.

Tomorrow we'll meet with the rest of the team -- the clinic coordinator, perinatologist and social worker (again), pediatric urologist, and the pediatric neurosurgeon. Then in the afternoon Shelly will get another MRI. Then they'll meet and decide if we qualify, and if everything still checks out at that point, then on Wednesday morning we'll decide whether or not we're ready to go ahead and randomize. If we get the fetal surgery, then Shelly would be admitted Wednesday evening to begin prepping for surgery, which would happen Thursday morning around 7 am.

Thanks everyone for praying for us, and especially those who are watching our children. Kiss their huge cheeks for us. We love you all.


  1. Sounds like an informative day! Thanks for keeping us updated--we are thinking of you and praying constantly!

  2. Wow, that's a lot of information! But it's wonderful that you feel such comfort throughout this whole thing. The Lord certainly is watching over you. Here's hoping today goes well, too!

  3. Amazing day! Such overwhelming amounts of information and thoughts to deal with. We are so proud of all you are doing, and pray for you always. Much love. ~Mom & Dad

  4. You're in our thoughts and prayers. Damon and Audrey will be over here soon. I talked to Damon on Sunday and he and I decided that he could feed Rocky while he was over at my house. He was really excited about that! I'm so glad that things are going well.

  5. Thanks for the update. You are in our prayers. Much love. Aunt JoAnn

  6. Decided to fast tomorrow. Let's give that computer a KICK! ~Mom