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.