Nothing too interesting...

to report. Aili is still doing great. There weren't really any changes from yesterday to today. She was less swollen today and less cranky because of it. It takes the body a few days to a week to adjust to how the heart is now. Because of that usually the upper half of the body swells, which can causes headaches. So she is doing good and is much happier. The occupational therapist (OT) came in today to see how Aili is feeding. She is doing great with that; suck, swallow, breathe : ). She wasn't as vigorous as usual, but that is to be expected after surgery. So the OT is going to come by tomorrow and feed with her again to see how she is doing.

Clay had to go down to Fort Lewis today to do some paper work, so the kids and I hung out at the hospital all day. Tealia & Jim (Andy's Dad) came by and visited with us, which was nice. Otherwise we just kind of hung out, played outside, did school work, etc.

Here is a picture of Aili from today...

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...

Amazing
Intelligent
Loveable
Imaginable
Super

Hero
Energetic
Amazing
Rugrat
Tough

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.

May 27th update

Aili is doing great. She has been eating today and doing very good with it, about 2 ounces every 2 hours (which is normal for her). She isn't on any extra meds or painkillers. I think they have been giving her just some Tylenol or something like that, but no morphine : ). We slept late today and ended up going in to the hospital in the after noon. Yesterday was such a long day and by the end of it, it was past 1 am when we all got to sleep! Everyone had a pretty good day though. Taryn could have used a nap, but was still pretty well behaved. I managed to get a lot of school work done with Connor. So we got the hospital and hung out with Aili for a few hours. She woke up occasionally and looked around at us. She seemed to really like watching Taryn and Daddy play together : ). Then we went down to the coffee shop to get a drink & to the gift shop to look around. The kids of course found about a million things they wanted, none of which they got...lol! Then we went to the sibling play room, where the UW Huskies were : ). They were there to make T-shirts with the kids. So we made some with their kicker Eric Folk. We had a great time. Here are some pictures from today & I will put some more up of the T-shirts tomorrow!

I have to say we have some great friends & family!! I want to thank everyone for all that they do. All of the prayers & positive thoughts are wonderful, along with the words of encouragement. They mean a lot to us! I would also like the thank Carol for feeding our crazy cats for us & getting the mail, and Toni for watching our sweet baby girl Phoebe!!

Also Thank you SO much Virginia for the wonderful stuffed animal for Aili, it really brightened all of our day!! I know that lots of people are thinking of us, but it was a nice reminder and very unexpected!!! Here is a picture of Aili with the card & cute lion : )

Surgery is done & pictures...

Our surgeon met with us after the surgery was done at around 8:30. He said everything went great!! We had to wait until they had her all set up in her room in the CICU (cardiac intensive care unit). Getting her all set up can take a long time! Our surgeon thought it should be about 30-40 minutes, it ended up being 2.5 hours. So we finally got in to see her at about 11pm. She looked really good, at least compared to the first surgery. She is doing great. They already took her off the ventilator today and are getting ready to feed her right now! They are thinking she will go to the floor (as in out of the ICU) tomorrow. That's about all for now! Here are some pictures from yesterday. I will put one of her chest & tubes, so beware (her chest is closed, so it's not too bad!)

The Glenn Procedure

Aili is in surgery right now. We are at the hospital waiting for her to be finished. We packed up practically the whole house yesterday and drove up to Seattle. The Ronald McDonald House didn't have any room but medicaid (para transit) is paying for a hotel. Aili qualified for medicaid because she was in the hospital for more than 30 consecutive days. Anyways, we got up here pretty late. We got to our room which was really small. it just barely had enough room for the 2 full size beds, so Clay was smart enough to tell me to go ask the guys if they had anything bigger available. They did so we got it and para transit would still pay for it. Now we have a room with two queen beds and plenty of room for all our luggage and Taryn's playpen. Plus it has a full kitchen in the room (plates, utensils, stove, mini fridge, microwave, dishwasher, sink)!!! So we are happy with it!

We had to stop feeding Aili last night/this morning at 4 am. She took it pretty well, but wasn't the happiest. We showed up at the hospital at 11 am today & we were told that they had to push the surgery time back because the case before us was taking longer than expected. Although it sucked to have poor Aili not get to eat for even longer we understood that those things happen and know the other parents must have been stressed out! With Aili's first surgery instead of the normal maybe 4-5 hours she was back there for 12! So they told us to come back 1pm. We went and got a bite to eat and ran a few errands, like the bank & got some diapers from the hotel, and then we came back. We signed back in and got her stats. I wiped her down with a special wipe & got her dressed in her hospital gown, which she looks adorable in! So we waited in that room for a long time. During that time we talked to the surgeon, some nurses & the anesthesiologists. It wasn't too bad of a wait, the kids stayed entertained with some toys we brought & a movie in the room. Aili was just tired & hungry, which she finally fell asleep and got a little cat nap in. They came and got Aili at about 3:30. Then they started to prep work, anesthesia getting IV's in, etc. They paged us at 5:30pm to let us know they had begun the actual surgery. They just recently paged us at about 7:30pm and said she was off of the bypass machine and they were doing good. So I guess they are just finishing up the surgery and will let us know.

While we waited we got some coffee downstairs, played in the playroom, got some dinner at the cafeteria, brought Aili's stuff to her room & now we are in the Family room on the computers (updating the blog, paying a bill, etc.).

So I will update again when I get a chance : ) Hopefully I can post some pictures on the next post!

Pictures again....

Here is Aili holding her bottle....
The 'reptile man' came to Connor's school.... Taryn with the snake...

Connor & his friend Dustin with the snake...

Connor, Dustin & Taryn...

Taryn & Aili....

A sleep over...

Connor trying to put 'bunny ears' on Dustin...

The next day we went to the reptile Zoo...

Surgery

Aili had another cardio cath. recently and everything looked pretty good. There is some scar tissue where the sano shunt and the pulmonary artery connect. Also the stint holding the other end of the sano shunt is broken, but I guess it is still holding it open.



We just scheduled her second open heart surgery. It will be on May 26th. They will be doing the Glenn Operation (http://www.med.yale.edu/intmed/cardio/chd/surgery_glenn/index.html).

Clay will be home soon to be here for the surgery and time in the hospital. Then sometime after we get home he will have to go back.