Sunday, January 4, 2009

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

3 comments:

Anonymous said...

Whenever you and the doctors agree on the date for her syrgery..you know I will be there!!

Looking back on 2008 wow...what a year! Both you and Tom have come so far and what wonderful parents you are!! Each day you take with such stride and also pride in all the accomplishments all your children have made...Murphy has grown and done so well in school and has handled a new little brother in the pack also. Well, Cooper just came into this family and is so well behaved and such a little doll..he is so precious and such a joy to be around. But our Miss Harlie..words cannot express how far she has come in one year..her walking, her independence, her attitude and her joy. When you are around this little lady you can only feel happiness, because that is what you see in her.. sheer happiness for what she has been thru and what she now can accomplish. Way to go Harlie!!! I hope and pray that 2009 will be a transitional year for her and a healthy one...get thru the heart surgery, get decannulated and continue to shine her love on all of us. Happy New Year Holton family. I love you.

Grandma said...

Sorry the comment above was made by Grandma

Susan said...

Wow Christy that is quite a year you're looking forward to. I know that Harlie will do great she always does. She is amazing. As are you and your family.