When I Am Weak

I wasn't thinking that today would be very hard. I got to sleep in an hour later than normal and I love to sleep in. I was only going to work a half day at the office and had settled most of my issues yesterday afternoon. I fed Anna Brooke Cheerios's and (and this is rare) she ate the entire bowl. If anything, today should have been an easy day. Not so much.

I guess it started when Bethany and I were heading out to our Pediatric Cardiologist appointment. Bethany's sister, Erin, came over to watch Anna Brooke (which she has done several times) and Anna Brooke pitched a fit (she has a hard time whenever Bethany leaves her and makes herself throw-up). And, of course, she ate the whole bowl of Cheerios's. So after cleaning up her mess and leaving a screaming child in the hands of her poor pregnant aunt, we head to UAB with only 30 minutes to get there and find a parking spot. We make it to the parking garage in about 25 minutes and drive through all 5 levels, finally finding a spot in a corner as far away from where we need to be as possible. We make our way to the doctors office and arrive only five minutes late. Not too bad all things considering.

After waiting only 45 minutes (note to self: no need to ever worry about being late here) we are called back to our room. The appointment was similar to the last: Dr. Colvin looked at Emma Kate's heart for a while and explained what he was looking for and what he saw. He said the pulmonary artery looked good and that blood flow was going to and from all the places necessary for surgery. One issue that he was struggling with getting a good view of her aorta. He said he believed it was just under 1mm (very small but not abnormal with HLHS) and that he would look again at our next visit.

We asked him a few questions and were kind of shell-shocked with his answer to our last question. We asked when we could meet the surgeon for Emma Kate. He asked our due date (Aug. 24th) and said that they are having a change of command (not sure when or who) and that Emma Kate might have her first surgery at the Children's Hospital in Boston. I think we were both a little stunned as we didn't ask any questions after. We left our appointment and just started talking about everything. And we are left with tons of questions...

How long after she is born will she be flown to Boston? He said that she would still be delivered at UAB, so how long until her surgery? Will we fly with her? Hotels? Insurance? Work? What do we do? Obviously we will be with her... but what about Anna Brooke? It is going to be hard enough on her even if the surgery is in Birmingham. I love my Anna Brooke and we want to make this as easy on her as possible. And a lot more questions that I can't think of right now.

And then all i could think about was Boston. Bethany and I have wanted to take a trip to Boston for a few years. I love the Red Sox (I liked them before the bandwagoners-mainly because of the "B" on the hat). I want to get a shirt from Harvard , see the old north church, walk through Boston Common and get a picture of us on Yawkee Way. And all I kept picturing was taking my wife and two girls to a baseball game and eating hot dogs. I want to go to Boston but not like this.

That is when I broke down. I think this is becoming more real to me. In the back of my mind, I keep hoping that this is all a mistake and her heart is healthy. But this is reality. My daughter has HLHS. She will have open heart surgery a few days after she is born. Whether her surgery is in Birmingham or Boston (where the majority of all HLHS surgery cases I read seem to take place) or anywhere else in the world I don't care. I want her to be in the best hands possible. Because one day my wife, two girls and I will go to a game in Boston. And we will visit Nana and Papa in Germany. And we will go spend a week at the beach with Kiki and Lito. And all of this crying and worrying and wondering will be better spent laughing and playing and growing. Even though I hate this, I am ok being weak right now. Because I know that I will be strong for her when she is born.