All About Audrey: April 2014

Happy spring everyone! We just wanted to share a brief update on our precious baby girl as she continues to thrive at home. Audrey is a sweet, giggly, chunky, little wiggle worm and becomes more independent each day... for a 5 month old! She's really into kicking things, rolling over, smiling, and sticking everything within arms reach into her slobbery little mouth! She's working really hard at being able to sit up alone by using her arm as a kick stand, but assistance from her Bumbo chair will do for now. We would really like for her to master sitting up before her next surgery, but either way, she's a rock star.

The blood flow in her heart looked great as of her last cardiologist appointment; so much that her doctor didn't want to see her for 6 weeks instead of the usual 4. That was such great news to receive, and we will be going back in two weeks to see how her shunt is operating once again. We are hoping to get a better idea of when her full repair surgery will be (we keep hearing late April/ early May) and to get the approximately 50 questions we have (so far) about this next surgery answered :) It's amazing how many questions you have once you are more knowledgeable on a subject. The first surgery we knew nothing, so we didn't exactly know what to ask. Now we feel much more informed now, but you can't help but still feel helpless in this situation. Getting our questions answered will help ease some anxiety I'm sure.

It has been nice pretending that her full repair surgery wasn't impending over the last couple of months. Instead, we were rejoicing in the success of her first OHS and focused on recovery. (Luckily, you easily get wrapped up in the joys of smiling, "talking", grabbing, rolling over, etc.) But now that her big surgery is just around the corner, it's getting harder each day to ignore. Watching her suffer and fight while living at the hospital again for at least a few weeks is at the absolute bottom of my list for all of us, especially after settling into a routine in the comfort of our home. I know it will take an army to get through this, as it did last time, but we will prevail. We are confident in this as we continue to place our faith in God to watch over our sweet Audrey.

Now that Charlie's busy season is finally over (well...for the most part), we are enjoying bonding as a family most nights and on weekends. However, we are bursting at the seams to take her out into the world with us. Soon....very soon! We appreciate the words of encouragement that we often receive and can't thank our family and friends enough for being so understanding during this time when we have been MIA for the most part. We will update everyone once we get word on her surgery or if anything exciting happens in the meantime. (However, we have learned over the past 10 months that no news is good news!)

Here are a few (ok, a LOT) more recent photos of our angel and some facts about congenital heart defects. We knew almost nothing about the disease prior to Audrey's diagnosis, so we hope to spread the word as these kiddos (and adults) deserve more recognition and funding.

Celebrating Congenital Heart Defect Awareness Week by wearing red; Feb.7-14, 2014

According to the Congenital Heart Public Consortium and The Children't Heart Foundation:

~CHDs are the most common birth defect, affecting almost 40,000 births in the US (about 1%)

~CHDs are the most common cause of infant death due to birth defects

~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them and there is no known prevention or cure for any of them.

~In the US, twice as many children die from CHDs each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHDs.

We are infinitely grateful that research has progressed the treatment of CHDs to where it is today, and that we are dealing with a now treatable disease for Audrey. We know that not every child/ family is as fortunate.

Here's a little peek inside her cardiologist appointments. She is so good when she gets her echo-cardiograms. And they're not quick either! What a trooper!