Friday, February 1, 2008


I had an interesting day yesterday. It's amazing to me the range of emotions I can feel in any one day. In the morning I was fine. Drew was at preschool, Ava had some little friends over to play, life was generally good (except for my ridiculously cranky daughter). Then everyone left, Ava went to sleep and Drew was watching a movie. I sat on the couch, immobile. This business of trying to choose a hospital and a surgeon for Drew's upcoming surgery is driving me crazy. I wanted to crawl into my bed and pretend like it wasn't happening. I told Dan I was in a funk and I couldn't think of anything that would make me feel better. I was unable to make any decisions and if he wanted me to go to the grocery store he would have to make me a list. So he did and I went. Once I got there, I noticed he wrote at the bottom of the list "anti-funk treat." And I almost cried right there in the grocery store because he is so sweet and loves me even in my funkiness. Then I went to the pharmacy and they asked how Drew was doing. I told them, he's fine, but I'm not, holding back the tears. Finished my shopping and ended up at the cashier who also asked me how I was and I seriously had to bite my lip to keep from crying. Am I nearing the Britney Spears danger zone? I hope not, but sometimes I wonder. Anyway, I made it back to my car where I announced to no one in particular that "I am not OK" and then sobbed there in the parking lot for a while. I just don't feel qualified, knowledgeable, or capable of making this decision. There are so many factors. And I am not a pediatric cardiologist or surgeon or nurse or anything close. So how do I decide?

Last night was also the Hearts of Hope meeting. Dr. Mainwaring, a pediatric heart surgeon from Sutter, was there to speak with us. And, believe it or not, I left that meeting filled with hope and certain that Drew would be ok no matter which surgeon we chose (which, by the way, doesn't make the decision much easier). Each time I hear about the history of congenital heart surgery and the advancements they've made I'm in awe. Did you know that infant open heart surgery was pioneered in the 70s? As in, if you were born before that with a serious heart defect there was nothing they could do for you. And it wasn't until the 80s that they began to do heart surgery on newborns? This is a brand new field compared to most of medicine and they've already drastically reduced the risk of these surgeries. The Fontan, which was one of the options for Drew's third surgery, was orignally done in the 70s and 80s with a risk of 40%! Now it is considered one of the simpler heart surgeries and only has a risk of 1-2%. That is amazing!

Of course, I had a list of questions for Dr. Mainwaring, and he graciously answered each of them. Now I can see why all his patients love him. I sort of wanted to give him a hug before I left. I told him about Drew's situation and he said it was not unusual to do a Norwood and Glenn with his anatamy. He told me that Dr. Hanley actually trained Dr. Azakie when he was at UCSF (small world!). And he also said that if he really thought one hospital was much better than the other he would tell me, but that they both have great programs and great surgeons. He advised me to ask questions about statistics and use the numbers to help guide me. That was all very helpful information.

Oh, one last thing, a reporter from the Sacramento Bee was at the meeting last night and interviewed me about our story. I believe the article will be in the paper next week some time, so keep an eye out!


Isabelle's Mommy said...

I love you friend and I am praying for you! Hang in there!

Molly said...

What a day! Hang in there!

Kathy said...

You made me teary eyed...stop that!!!
I think we've all had days like this...whether you have a heart baby or not.
I think your choice of surgeons and hospitals are great...either decision you make will be a good one.
You deserve a long, hot bath. I hope you have a wonderful, stress free weekend. And...what a sweet husband you have.

Jessica said...

I love you! Hang in there!!
It's totally OK to cry at the grocery store.

PS I did know about the surgery being pioneered in the 70s. I had a cousin born before I was who had a congenital heart defect and they couldn't do anything for him. If he was born 10 years later, it would have been a whole different's amazing.

Anne Marie said...

I just want to reiterate what an amazing job you are doing. I know you always hear that, but when you start to feel this way- just remember that all of us other mommies are pulling for you, and- yes- we do, too, have melt downs in grocery stores and parking lots. Dan's the man- let him know his little note was perfect!

Vanessa said...

I'm so sorry your going through this. I know the feeling. As I sit here in the hospital I wonder if we made the right decision about her surgery. Don't get me wrong, I know the surgeon is well known but I wonder if her problems have anything to do with her heart. We always want the best for our children and making decisions like this is not very easy. I'll keep you in prayer and know that you will make the right choice.

Take Care