Rocky Moments

Warning: Some of this is tough to write and may be tough to read. But one of our goals of this blog is to be cathartic for us, and I need to get it out. Another goal of this blog is to be a "guide" to other families going through this experience. You can never be totally prepared for every possibility that may come up. We hope we have a "success story" to share someday, but that story comes with some rough roads. And you do get past them.

It's been a rough day and an even rougher night. Clare did great during surgery. She made the transition on and off bypass smoothly. The surgery, from an aortic standpoint, was successful. The surgeon was able to use all of Clare's own muscle tissue to patch her aorta. However, tonight has been tough.

I am writing this after about two hours of intense crying and praying. These next 12-24 hours are rocky for Clare. Given the complications due to her Williams Syndrome and the condition of her blood vessels, the doctors are walking a tight line with keeping her body functioning. Clare's two obstacles post-surgery are bleeding from her surgical site (because the patch on her aorta is so extensive) and maintaining her blood pressure. The doctors have a fine balancing act keeping her blood pressure at a good rate while keeping her heart beating and her circulation going. This is harder than it sounds. If her blood pressure gets too high, she will start bleeding. If her blood pressure gets too low, she will have problems with the blood circulating throughout her body, which would have an impact on the other systems of her body.

When we first got to see Clare post-op in the ICU, she looked, quite frankly, terrible. She had tons of wires, tubes, lines, monitors, and 15 different medications being pumped into her body. Her chest was still open because the surgeon did not close her breastbone due to the risk of bleeding. (This was not as gruesome as it sounds because her chest was covered by a betadine bandage.) She had two nurses working steadily on her, and we were updated by the ICU cardiologist. Our family came in one-by-one to have a peek at her. It was hard seeing our little girl like that, but everything seemed in control. Then it all changed. Suddenly, Clare was a "Code Blue." Doctors, nurses, and special techs with scary-looking equipment came rushing in. Shawn and I got shoved to the side, not out of rudeness, but because everyone was focused so intently on Clare, they just didn't see us anymore. Finally, one of the doctors came over to talk to us. Clare's heart rate had dropped and her blood pressure increased. She was in trouble. The team of specialists were trying to gain control over her system again. She was put on an external pacemaker, among other machines. I can't even begin to explain what all they did to her because I don't know. And I don't know if I want to know. It became too much for Shawn and I, and we left. This was the hardest decision. I was so scared to leave my baby, but I couldn't stay there and watch helpless not knowing what was going on and in the way. The doctor explained that this was expected to occur post-op due to the Williams Syndrome and the multiple vessels involved in Clare's surgery. Plus, although the patch will correct her aortic problems, the pulmonary side of her heart is still very sick. He explained that the doctors were trying anything and everything to get Clare stable again. He said this might happen throughout the night as they worked to get her through this. None of that made me feel any better. I can't put into words the conflicting emotions between staying and going, but finally Shawn and I decided to go. We were no help to Clare in the condition we were in.

We came back to our hotel, cried, prayed, and held each other. I tried to go to sleep. Eventually, Shawn told me he was going to go back over to the hospital. Clare's nurse was going to call us if we were needed, but it was too hard to just sit around. I did not go with Shawn because I was so physically sick from all the emotional stress. When Shawn came back 30 minutes later, he brought good news. Clare was back in stable condition. She was back to only having the two nurses with her. Her amazing team of doctors had gotten her through that rocky moment. Shawn gave Clare a kiss and told her that Mommy and Daddy love her very much and were praying for her. I am so glad Shawn went over there. Although I did not see Clare, I don't have that last terrifying vision of her as I go to sleep tonight. I am sure there will be other rocky moments tonight and tomorrow, but Clare has us shown again and again that she is a fighter. And God has shown us again and again that He is taking care of her.

Clare's not out of the woods yet, but she is in good hands, physically and spiritually. If anyone is checking the blog late tonight, please say a special prayer for Clare and her doctors tonight. And for us, too!