Thursday, May 28, 2009

Out of the CICU : )

Aili was moved out of the CICU and onto the regular floor. We now reside in room 4004 on G4 (or for all you people who have no clue what I'm talking about, that's Giraffe 4. 4th floor Giraffe elevator.) I like how our hospital is set up. I really think all hospital's should be like a children's hospital is. They are so colorful and inviting, unlike the normal bland and boring hospitals. Ours has different sections to help everyone find their way around, the Whale section, Train section & Giraffe section. There may be more, but those are the ones I know of. There are wonderful pictures, murals and animal statues throughout, which are bound to brighten any ones day! I will have to post some pictures of it. Anyways, moving on. So Aili's chest tubes were taken out and she was moved to the regular floor. She is doing great and just hanging out. Resting so she can recover. Even at 6 months old she knows what she wants and what she doesn't want. Right away our nurse in the CICU, Zane, said she didn't like the breathing tube and NG tube. We knew she wouldn't because she hated the NG tube before. I think that is why she did so well when they pulled it so soon after surgery. She didn't want it & knew she didn't need it. Now she is working on getting the cannula our of her nose too. Every time she can she tries to pull it out. I wrote on our dry erase board some tips for the nurses so they would know what Aili likes & what she is used to. Like how she likes there to be noise, she is much too used to the TV & Taryn playing in the background for it to be quiet. So for the most part she is just relaxing up there : ). She does still have the cannula for some extra oxygen, but I think that is all she has.

Here are some pictures of hearts (just drawings)...

What a regular heart looks like...

One version of an HLHS heart looks like...
Aili's heart after the first surgery, the Norwood...
Aili's heart now after the Glenn...

Aili was a little more swollen today though. She still looked really good.

Aili's new room...

A room with a view...

I still need to get pictures of the T-shirts we made. My favorite has to be Aili's. It is nice and simple, but looks so nice. Hopefully she doesn't get sick of my new love of things with hearts though : )

There is a wonderful girl everyone should know about. Her name is Jamie. She is the kids "Aunt", in other words my Mom's boyfriends daughter. Anyways, she really loves the kids. She has done so much for Aili & Taryn and for anyone affected with heart disease. She has been raising money for a charity in Aili's honor & it is great!
Today she left a message that we found when we arrived at the hospital...


It was really nice to get : ).

All these things that people do for us are so great. We really appreciate it. But I think it will be even cooler for Aili when she gets older. She will be able to look back at the pictures, read this blog, & hear from stories from us, about all of the wonderful things people have done and all of the amazing things she has fought through to get where she is going.

So thank you all again, not just from us, but from Aili too!

I also would like to ask for some extra prayers for a friend of ours. I won't go into details or give any names for privacy purposes though. It would be nice if everyone could pray for a little boy that has the same thing as Aili. He is just about the same age as her & also lives on Fort Lewis.


  1. Leave it to Aili to make hospital gowns stylish! She looks good. You all are in our prayers, Love you all. Grammalaine

  2. That poor little princess pea! Kisses from us to her *MWA*!