Friday, October 23, 2009

There's A Lot To Write About.....

A Sick Baby and Lots of Germs
Managing Kaitlyn's heart symptoms has become a full time job. Feeding her takes all day. She would much rather sleep. Four weeks ago before we saw any negative effects from her heart defect she was eating 24oz/24hrs. Over the last weeks it has decreased and she is only eating approx. 16oz/24hrs. On top of it all she has the "crud" that has been going around. Wednesday we went in for a chest x-ray to rule out pneumonia. That came back good but they did see something "viral" on the x-ray. They tested her for RSV and that came back negative. But there is still something nasty going on and its kicking her buns. Which is making her even more tired and less hungry. Arghhhhhh!
To get her healthy and keep her healthy for surgery she will now rarely leave the house. Its impossible to keep her in a bubble but I'm going to try. We have two little boys at home who are constantly bringing home germs. Not to mention my husbands place of employment where there are 1000 + employees and inmates (he's an employee :)) Unfortunately Kaitlyn's visitors will be kept to a minimum and there will be hand sanitizer for all. I'm going extreme!
You would never know how sick she is by looking at these recent pictures. Here are some of her many beautiful faces...

We went to Detroit so we can go to Ann Arbor
This Thursday we went to DMC Children's Hospital in Detroit (ranked 27th in the nation) for a pre surgery consultation for Kaitlyn's upcoming heart surgery. We have been battling with our insurance company since before Kaitlyn was born because we want her surgery performed at MOTTS Hospital at the University of Michigan (4th in the nation), which is "out of network" according to Priority Health (PH). PH had dug their heels in and wouldn't budge until recently. A couple weeks ago we were told we would be granted a 2nd opinion consultation appointment at MOTTS. Finally a small step in the right direction. There only stipulation was that we visit DMC Children's Hospital first. Ugh!! We went to appease the insurance company. Long story short she had another echo and it was decided that they want to do surgery sooner then we had thought. They wanted to do it in November, I convinced them to wait until December. Surgery is scheduled for December 2nd!!!!!!!!!!!!

We have not given up on MOTTS. Hopefully we will have an appointment scheduled to go there by Monday. Time is running out but I'm convinced that what ever is meant to be will happen. I'm still sure that MOTTS in Ann Arbor is the right choice, and I will continue fighting as long as I can.
Kaitlyn getting her Echo cardiogram done on Thursday!
She sat nice and still!
I will write more soon about heart appointments and surgery plans. Please keep praying for Kaitlyn!


  1. What a pretty little lady!
    You and your family are in my thoughts:)

  2. Keep on marching against the germs and the insurance company. It's so difficult to keep trudging through it all, but it is worth every minute.

    Her pictures are adorable! Such bright eyes!

  3. You will be SHOCKED how she will look sooo much better after surgery. We never thought Carly looked terribly sick before her 1rst surgery either. Until after the fact.

    I'm pulling for UofM...for obvious reasons :o) Either way, I sure hope it gets figured out for you. Sooner, rather than later.

    Praying the germs are kept away from you all. I know just what you're thinking. I was the very same way. Hand sanitizer. Signs at the door to remind sick people to plz stay away. Disinfectant spray....Paul used to kid around and tell people that I bought 55gal drums of disinfectant!

    Hope sweet lil miss gets back to feeling better and is able to fight that bug off soon.

  4. I will be praying for Kaitlyn - that she feels better soon and that you are able to keep your home as germ free as possible!

    She sure is cute in all of those pictures!

  5. She will be in my prayers. She is such a cute little girl! I sure hope she feels better soon!

  6. She's a love! I know what you're going through with the germs! Even though Bennett has had his surgery he's still considered "at risk" and now the girls have strep throat and possibly H1N1!! I'm thinking it's not the flu though. So stressfull! Praying for Kaitlyn to stay healthy!

  7. Oh and I am hoping that everything works out for you and that the insurance company gives in. Also praying to keep Kaitlyn healthy before her big surgery. We kept Wysdom at home pre surgery and basically in a bubble. I put hand sanitizer at the front door and a note about his hospital visits and trying to stay healthy. I also cancelled all appointments the week and a half before surgery. My therapist were all understanding. Hoping you keep germ free. I am glad to hear that it's not RSV or H1N1. Hang in is soooo worth it after the surgery. She will have so much more energy.

  8. Praying the crud ends for you soon! We hung a bottle of hand sanitizer on the front door with a little note reminding everyone to de-germ before coming in :)

  9. Kaitlyn is just so precious! I love the pictures! The germ warfare is going on in our household as well and I'm trying to keep my germs away from the rest of the crew. I hope everything gets worked out for little K's surgery!!

  10. she is getting so big. good luck keeping the germs away!

  11. Those echo pics bring back the memories. We'll say a prayer for you about MOTTS and that the best situation be the one that works out.

  12. your little kaitlyn is TOO CUTE!!! i am sorry to hear that she has some sort of viral thing going on and that her heart is really starting to affect her more, especially when it comes to her eating! Whitney had the exact same thing happen and was super sick and even had a feeding tube until about 8 weeks after her open-heart surgery. She had her surgery December 1, 2008 (one year and one day before kaitlyn) and it is unbelievable how this surgery literally saved her life. it took about 8 weeks to really start to see her strength and overall health improve after the surgery, but once she started improving, so just kept getting noticeably better each day. i hope your ins. can see that there is no reason in the world the univ of michigan hospital should not be considered in-network for you, if that is where you would want something so important for your little girl to take place! we will be thinking of you between now and dec. 2nd (and thereafter, as well!!!) :)