A year ago today

A year ago today you had your first open heart surgery. I remember waiting the 13 days from your birth to today, wondering every day when your surgery would happen. It seemed everyday someone else was sicker and needed to come first, which was good that you weren't as bad off yet the anticipation still built. Then the day finally came. You were in the OR for 12 hours. 12 HOURS!!! 12 hours of wondering, waiting, questioning. Finally you were out and we could see you. You came out on ECMO though, a hear-lung machine. Last year we sat at the hospital waiting, this year we spent the day together running errands. A year makes such a difference. You are doing so well and doing so much!

A year ago....

Now...

Happy First Birthday Aili!!

Aili is ONE!! YAY! We have made it through an amazing year : ) Here are a few pictures of her birthday....

Swallow study & Feeding therapy

We had a swallow study a while back and it went OK. She still needs to be on 'nectar' thick liquids. They said she still has a very high possibility of aspirating and we have to watch her very carefully. When they did the nectar thick barium, she didn't aspirate, but there was liquid left there, that she could aspirate. (sorry that probably makes NO sense....haha!). They then tried 'honey' thickness barium, which she aspirated really badly. She turned red, her eyes watered and she choked/coughed. They did have to use a different nipple with the honey thick, so that may have been part of the problem. So for now we stick with the nectar thick and watch her carefully. Her feeding is still pretty slow going, but she is starting to eat more solids and the therapist said I am doing everything just like I should. So we will just keep at it. At least she doesn't still have a NG tube!! We got her weighed the other day at WIC and she weighed 16.5 lbs. She's still such a mini compared to everyone her age, but she is still growing at her own rate. I think she was like 26 or 27 inches...I always forget that part! We will keep her on formula (at 27 cal. per ounce) after a year and continue on working on solid food. Here is a picture of the cutie.....

Gearing up for Aili's Birthday!

So we are getting ready for Aili's first birthday! What a special birthday?! It's amazing to think this time last year I was majorly pregnant and going to tons of appts. It seems like we went to a million appts. too. I remember having at least 3 appts. every week for weeks! Anyways, so I have been coming up with ideas for Aili's party. We have a theme, a cake set-up & party favors. Her birthday is November 25th, but we will be having her party on Thanksgiving, that is when everyone is able to get together. Clay is coming back from Iraq for his R&R for this : ). We are all getting excited. I am trying to get Aili ready to eat some birthday cake too. Well I need to clean my house...

Professional Pictures

We got some professional pictures done the other day. They were FREE : ) and done so we could send some to our soldier (Clay : ) ). We are all doing wonderful. Clay will be home for R&R in Nov. and Aili will be 1 on Nov. 25th!! Can you believe it??? Anyways, so here they are...

Newborn Swag - My new store

I have opened a store!! It is named Newborn Swag, and I sell things I have made. Feel free to check it out and pass it along to friends. Thanks!!

NewbornSwag.blogspot.com

NewbornSwag.etsy.com

http://www.facebook.com/home.php#/pages/Newborn-Swag/130091108258?ref=ts

Just tonight

When your baby is going through the things that Aili has, you just kinda push your feelings to the side and stay strong so your baby can. When Aili is in the hospital I don't feel panicked, because I trust the doctors and nurses and because I need to stay strong for everyone.

Then months later I think about it. It's all I can think about. Nights like tonight are when I feel panicked. I panic about what could have happened and what has happened to many other families. I grieve for those families. I am thankful for my baby. These nights are when I want to break down & cry. I can't help but think about what she looked like, how she couldn't do anything, what she must have felt & thought.

So although Aili is doing great I still worry. She is my baby and I love her. We can always use the prayers of friends, family & strangers and so can so many other families dealing with the same issues.

My new Hair : )

Crawling : )

I know it has been a LONG time since I have updated, so here is a video of Aili crawling. I think she has been secretly crawling behind our backs, but I finally got to see her do some good crawling on August 27, 2009. Here is a video of it.... (I will update more later!)

RIP Dear Geordyn

As some of you know there was a little boy that was born about 2 weeks after Aili. He also had hypoplastic left hear syndrome. I had once asked for prayers for him & his family. His family also lives on Fort Lewis & the kids had their surgeries at Seattle Childrens, because of that I got to meet them and get to know them. Sadly Geordyn lost his fight and passed away on July 17, 2009. I am once again asking for prayers for his family & friends.

Here is a memorial website for Geordyn. http://www.geordyn-mercado.virtual-memorials.com This way you can look at him, see his family, read about them, & maybe leave them a message.

Thank you!

A quote

This is a quote I found on a friend's blog. I just had to put it on here, so I could remember it for later. It is so true. So far I have done pretty good with keeping up with every little thing, but it is much more difficult to catch and remember every little moment when you have more than one....

"The first child got me shiny new, like a new pair of shoes, but he got blisters, too," writes columnist Anna Quindlen. "The second child got me worn, yes, but comfortable."


More to come later.

Home Again!

We are home again! We got home on Monday night. So Aili was only in the hospital for 6 days!! WOW! She is such a strong girl! She is doing great and healing well. She is pretty much back to her normal self, she rolls sometimes, hangs out & plays. She has been pretty darn cranky lately. We're not sure if she is in pain or what. I don't think she is in pain, because the hospital gave her pain meds on Sunday night and hadn't needed to since. I have given her tylenol a few times, to see if that helps. Well we are super bust as usual! I will post some pictures soon when I have a free minute!

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!)