Happy New Year!

So, wow! It's 2009! For the last week I've had lots of things going through my mind. Looking back, 2008 was a pretty big year. And looking ahead, 2009 will be a big year, too. Here's a quick peek at what lies ahead for us this year:

1. Harlie's third heart surgery called the Fontan. This will be her biggest and most involved heart surgery so far. I'm mentally preparing for a lengthy recovery in DC.
2. Harlie might be decannulated (removal of the trach). What a HUGH LIFE CHANGING EVENT THIS WILL BE!!!!!! But this is not something we can count on - so I try to keep my dreams in check - just in case.
3. Murphy turns 5 in May and then will start Kindergarten in the fall. WOW!
4. Hopefully, Harlie will start some sort of preschool later on this year. Um, can we say SCARY! I might have a nervous breakdown. But, it will be good for her and I will have to be strong and let her go.

With any luck, Harlie's only surgery this year will be the Fontan. As of right now, no more are planned. I think after the Fontan, the next items on her agenda will be getting her a prosthetic ear, and eye surgery to repair her left eye issues - both will be done when she's 5.

So, hopefully things will calm down a bit towards the end of the year - medically speaking, I mean. Perhaps we can become more like a typical family.

As far as when her heart surgery will be, I'm not sure right now. Tom and I have done a lot of brainstorming the last few days and we've come to the decision that it would be best for our family if she had it in the spring vs. the summer like we've talked about in the past. I don't think it will matter that much to her docs considering most Fontans are done when the child is around 18 months old. They wanted to wait longer in Harlie's case to give her lungs as much time as possible to grow as big as they can. She only has 3 lobes instead of the normal 5. The condition of her lungs are vital to the new circulation the Fontan brings to her body. Her heart is being re-plumbed if you will, and so it will function differently than "normal".

But I'm thinking that moving it ahead a few months won't make that big of a difference. And I really don't want to spend our summer in the hospital, especially while we're getting Murphy ready for Kindergarten. Plus, emotionally, we just want this behind us. I don't want to go through the next 6 months with it looming over our heads. And since we were looking at spring for possible decanning, ideally, we could work on the things needed (sleep study, capping trial, etc.) while Harlie is recovering from her heart surgery. But we'll just have to see how things go.

Well, I have more to write about but I only get limited amounts of time in front of the computer at once, so I'll have to work on that later.

I hope you all had a nice New Year celebration. I am hoping that 2009 will be a great year for us all.

Take care,
Christy