Tuesday, March 31, 2015

Why I Spread CHD & Heterotaxy Awareness

I know I usually post about coupons or matchups, but I want to step away from that briefly to give an introduction to one of the most important tiny people in my life...my youngest daughter!!

Gail was born at Texas Children's Hospital on August 12, 2014. It was not only one of the happiest days of my life, but one of the scariest as well.

You see, Gail was born with Heterotaxy Syndrome (this means that some of her organs didn't form where they were suppose to) and complex congenital heart defects (CHD). We knew of her conditions ahead of time, and were very blessed to be in the care of some of the best pediatric heart doctors in the country. As you can see above, she was a healthy pink color when you consider the facts!

At 6 days old, sweet Gail received her first repair to correct a condition called coarctation of the aorta. This means that her aorta was too narrow to sufficiently supply blood to her body. It was the most nerve-wrecking days I've ever had as a mother!

There are very few people I've ever shown the picture above to... this was my sweet baby after her surgery, up in the CICU. She was still very heavily sedated, as this picture was taken literally only a few hours after she left the O.R.

For most of that night, I halfway slept while sitting straight up in a stool next to her bed/station in the CICU. The wonderful nurse who was assigned to her that night saw how tired I was, and it was she who reminded me that I needed to get some rest because I'd just given birth less than a week prior. Reluctantly, I did make my way down to the Ronald McDonald House right after that for some much needed sleep.

 Following her surgery, we spent two more weeks in the hospital before Gail's discharge. Lots of pictures were taken during her recovery. Little by little, she started showing us her spunky little personality! She is a lot like ME with her personality, and I love it!!

She is in no way out of the woods yet. One of Gail's heart defects still requires open heart surgery to repair, although we don't know when that will be yet. As a result, we make very regular trips to Houston to keep a close eye on her heart.

As you can see above, we don't let the numerous doctor appointments deter us from our crazy and cooky ways, and it's very likely that if you ever see us around Texas Children's, we will be taking silly selfies like the one above ;)

Have I mentioned that Gail has two older sisters who adore her!? She gets a little bit of her spunk from them as well!

Despite the difficult times we may endure, we try to make the best of our lives in every way possible. Our little family is closer than it's ever been before, and we never take a single day for granted.

We're living life with somewhat normalcy these days even though we know what still lies ahead of us on this road. Gail is now getting close to 8 months old, and is the cutest little ball of spunk that I know! With that, I'll leave you all with two last pictures to prove it.

This amazing little girl is the reason why CHD and Heterotaxy awareness are so important to me. She is 1 in 100!!!

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