KKTV 11 Interview for the Heart Heroes Gallery

At the unveiling of the Heart Heroes gallery on Monday night, our local KKTV 11 news channel came to the Antler's Hotel and gave us some wonderful publicity.  I post this with some trepidation, because I don't like myself on camera.  Thankfully, my part is ever so small (blink and you miss me--and that's a good thing).  Little Thad's picture steals the show.  He has the brightest smile and biggest blue eyes.  AnnaSophia's picture makes the cut too with her big big eyes and long lashes.  Click here to watch the clip.  Thank you KKTV 11 for helping us raise awareness in our community about congenital heart defects.

Heart Heroes Gallery Unveiling

These are a few photos from the Heart Heroes Gallery unveiling.  This was a big night for all of the families involved.  Members of the Passion/Education Committee for the American Heart Association's 2011 Heart Ball worked tirelessly to make this galley happen.  I would like to thank Kristi Steeger of KristiAnne Photography for the beautiful photos and Dean Maurry of Shayden Designs for the poster designs.  They did a phenomenal job of putting together a gallery that is memorable and hopefully will touch many, many people. 

I did a quick interview with our local KKTV 11 news channel about the gallery.  I was asked what this gallery meant to me.  Wow, how do I answer that in a 10 second clip?  This gallery means A LOT to me.  Not only is my precious little AnnaSophia featured in it, but this is about the big picture.  Congenital Heart Defects are the #1 birth defect in the world.  About 1 out of 100 babies will be born with a heart defect.  It kills twice as many children every year as all childhood cancers combined. 

The point of this gallery is awareness.

The more we get people thinking about Congenital Heart Defects, the more money we can raise, the more research will take place and the more lives we will save.

AWARENESS = FUNDING = RESEARCH = A CURE!

The reality is, children like AnnaSophia die everyday because of their heart disease.  I want to save my daughter's life.  She is at risk for rejection, graft failure, transplant coronary artery disease, infections, cancer and a whole lot of other complications. 

It is not a question of "if" she will get sick...it's a matter of "when". 

My hope and prayer is that the research precedes AnnaSophia and any complications she will encounter.  My hope and prayer is that my daughter will outlive me, and that many other children like her will live wonderfully long and productive lives.  Please visit the gallery this week at the Antler's Hotel in downtown Colorado Springs.  I will post updates of where you can find the gallery in the weeks leading up to Heart Ball.

Blessings.

Heart Heroes Gallery Unveiling

The American Heart Association's Heart Heroes Gallery will be unveiled on Monday, November 29th at the Antler's Hotel at 4 S. Cascade Avenue, Colorado Springs, CO 80903 in downtown Colorado Springs from 4:30 to 6pm.  This event is free and open to the public, and I encourage everyone to attend. 

The photos are absolutely beautiful!  I know each and everyone of these children, and they are truly inspiring.  These are children who have battled and continue to battle congenital heart disease.  The amazing thing is that they do so with bright smiles, infectious laughter and amazing bravery.  Looking at these children, no one would know what they have dealt with or continue to deal with each day.  Some of these children may have physical limitations, but they don't let it keep them down. 

Life is not about what they can't do...it's about what they can do.

Heart Heroes Gallery

The American Heart Association's Heart Heroes Gallery is almost finished!  This is the gallery that features 8 of our local Colorado Springs children who are battling Congenital Heart Disease.  You can click here to see the official 2011 Heart Ball page and invitation to the unveiling of this special gallery. 

The ladies at the American Heart Association and the members of my Passion/Education Committee have worked very hard to make this happen.  The photos are breathtaking, and Kristi Steeger, our amazing photographer, did a wonderful job capturing the beauty of our children.  The official unveiling of this very special gallery will be taking place on Monday, November 29th from 4:30 to 6pm at the Antlers Hotel in downtown Colorado Springs.  The event is free and open to the public, so please come and see these beautiful photos and meet the survivors in person.

AnnaSophia and the American Heart Association

Recently, I have become very involved in our local Mended Little Hearts organization here in Colorado Springs.  We are a group of parents who are passionate about helping other families who have been affected by congenital heart disease (CHD).  The goal of our group is to plan fun events for our "CHDers", provide a support group for the parents, education about CHD's, fundraising for research and continued support to our families.  It is a national organization with groups located in cities across the United States.  You can click here for more information on Mended Little Hearts.

I have also started volunteering with our local American Heart Association.  With 1 out of 2 people affected by heart disease, and 1 out of 100 children born with a CHD, this seemed like a natural thing for me to do.  I have become involved with the Passion/Education Committee for the 2011 Heart Ball, which will be held on February 12th, 2011.  Part of what I have been working on with this committee is helping to put together the survivor gallery for this event. 

The survivor gallery features 7 children from our Colorado Springs community who have battled congenital heart disease.  AnnaSophia is one of the children whose photo and story will be featured.  This gallery will travel throughout southern Colorado to many businesses for the purpose of raising awareness about not only congenital heart disease, but also childhood obesity and childhood acquired heart disease due to lifestyle choices.  Our hope is to have the gallery travelling by the first week in November. 

I will continue to keep everyone posted on the schedule of the gallery so that friends and family may visit it.  This has been an incredible opportunity to put CHD's and acquired heart disease on people's minds.  I want to educate, inspire and save lives.

Kristi Steeger, our amazing photographer, did an incredible job of capturing the spirit of our CHD children.  She selflessly donated her time to photograph each one of the survivor gallery children, and has worked closely with the American Heart Association to make this gallery a success.  You can see a sneak peak of the photos by visiting http://www.kristiannephotography.blogspot.com/.

For more information on the Southern Colorado American Heart Association click here.

Here is a sneak peak of AnnaSophia's bio for the survivor gallery:

AnnaSophia's Story

Congenital heart defect was something that never entered my mind until the birth of my third child. AnnaSophia Elizabeth Berry was born December 31st, 2007. It wasn't until she was 9 days old, and her oxygen requirements continued to rise, that she was diagnosed with multiple heart defects: an interrupted aortic arch, a large ventricular septal defect (VSD), an atrial septal defect (ASD) and a bicuspid aortic valve.

She was rushed to Denver Children's Hospital where she underwent open heart surgery at 11 days old. My heart broke for my little newborn baby girl, and the challenges that she faced at such a young age. I didn't even know if she would survive. Most of her defects were corrected at that time, except for her bicuspid aortic valve. That surgery would have to wait till she was much older. Her little heart was so swollen that her chest had to remain open for two days. She developed junctional ectopic tachycardia after surgery, and medication was needed to control her exceptionally fast heart rate.

Over time, AnnaSophia's heart started having a hard time pumping blood through her bicuspid aortic valve, and she was diagnosed with heart failure. She was seen by her cardiologist every 1 to 2 weeks, and more medications were added to help her heart function better. As the heart failure progressed, she also developed pulmonary hypertension. It was frightening and heartbreaking to see how swollen she was, due to fluid retention. Because she did not have enough blood flowing to her digestive system, she vomited most of her feedings. AnnaSophia was at risk for sudden cardiac death.

At 5 months of age, she was listed for a heart transplant at Denver Children's Hospital. I was never so frightened in my entire life, as I waited and watched AnnaSophia struggle to live. Three weeks later, she received the miracle that she needed. On July 11, 2008, she underwent a heart transplant. After her surgery I was amazed at how pink she looked, but she still had challenges. She struggled with complications due to her pulmonary hypertension. The afternoon of her transplant, she went into cardiac arrest. At that moment, I felt like my heart had stopped too. The doctors saved her with life with CPR, and additional medications.

She was discharged from the hospital one week after transplant, but her challenges continued. She started rejecting her new heart a few weeks later. She received medications and chemotherapy-type infusions to suppress her immune system and combat the rejection. As the rejection improved, she developed a very dangerous CMV (cytomeglovirus) infection. The virus lives dormant in her heart and can cause her issues at any time.

AnnaSophia's first year of life consisted of surgeries, medications, pic lines, feeding tubes, infusions and transfusions. She had no idea how sick she really was. She smiled and cooed her way through heart failure, rejection and infections. She has an amazing strength and spirit that inspires me daily.

Today, AnnaSophia is an amazing and vibrant little 2 and 1/2 year old. She is doing very well, and looking at her, no one would know that she has battled congenital heart disease and had a heart transplant. She continues to be at risk for rejection, infections and many other complications. AnnaSophia has had 12 surgical procedures in her short life. She has 31 scars on her little body, the most obvious being the zipper down the middle of her chest. They serve as constant reminders of the journey she's walked, the challenges that she still faces and the miracle that she is.

Sometimes Life Takes a Detour

I know that this post comes right on the heels of my post about inspiration.  I've debated many times on how to share the changes in our family, and the words have not come easily.  It's a hard pill to swallow, especially for me.

After 15 and 1/2 years of marriage, Steve and I are divorcing.

I was warned when going through the transplant process that the divorce rate among couples with critically ill children is about 75%, but as always, I tend to be an optimist.  I really never thought that would be us.  Can having a critically ill child cause divorce?  Maybe, but I tend to think that the high divorce rate is because stress maximizes problems that were already there.

Being the left-brained nerd that I am, I turned to research to help me make sense of things.  I don't know if it necessarily helped, other than to provide comfort food for that left side of my brain.  I was shocked to find out that the Evangelical Christian community has the highest divorce rate among all of the faiths.  Even the atheists fair better in marriage statistics.  Why???  What is going on here?

The answer is:  I don't know.  Maybe I need to do more research. 

That leads me to Rabbit Trails and Detours, my new blog.  The one thing I love to do is write.  It's therapeutic.  I love words.  As my sister often says, "Mary likes big words."  This is where the nerd part comes in again.  It's not that my goal is to set myself far apart from others or make people uncomfortable.  It's just that sometimes that left side of my brain gets excited and can't help spewing research, little known facts and big words.  I will try to keep this to a minimum.

AnnaSophia's blog will continue, but I realized that the focus of her blog is updates on the children, Congenital Heart Defect (CHD) awareness and inspiration as we walk our journey of medical challenges.  Rabbit Trails and Detours provides a forum for my mental meanderings that I so often find my brain taking. 

The reality is that every person's life journey takes detours.  There is not one person I've met who can say that their life has turned out EXACTLY the way they imagined it.  Maybe the destination is the same, but the path taken to get there may not be what was originally imagined. 

If God had sat me down and told me, "You will have three children.  Your babies will be sick.  The first will be on the Autism spectrum, the second will have reflux, and the third will have a broken heart.  You will be raising them by yourself.  You will lean on Me for everything, and your faith and trust in Me will grow.  I will be here for all of your needs." 

I would have most  likely said, "Thanks God, but that doesn't sound like fun.  Can I have the easy, fun life instead?  I'm not strong enough for that, and that life scares me."

I've imagined God's response to me many times.  I can't directly speak for Him, but I know without a doubt that He is here, He is real, and He is for us--not just my family, but anyone who seeks Him. 

Without question, life is changing for all of us.  I am walking down a path that I never thought I would lay a foot on.  I have worked through every emotion from shock and sadness to anger and embarrassment. I am under such a tremendous amount of stress right now, and there have been times where it was painful to take each breath.  I can honestly say that I have more good days than bad now. 

As painful as this time has been for myself, it has been a terrifying time for my children.  I'm usually able to keep them smiling, and I work very hard to make them feel loved and secure.  I don't want them to ever think that this was their fault.  One of the lessons they have unfortunately learned is that you cannot control what others do--you can only control your reaction to it, and trust in God.

One thing is certain, I feel God's presence as I walk this path.  I have felt as though He has been a step ahead of the children and me, taking care of us.  The Lord has put amazing people in my life during this time, and I feel very thankful for my friends' and family's support.  I don't know what His plan is for my children and me, but I hope that our hearts are healed and that love and joy will always be present in our home.

Cardiac Clinic Day

AnnaSophia was absolutely full of charm today.  These are the days that make a parent proud.  We started our day very early (in the car by 5:30am) for her routine Cardiac Clinic visit.  She has been doing so well, that we are able to go to clinic once every four months.  She continues to get her immune suppression levels checked every two months.  This is such a change from going to Denver Children's Hospital two and three times a week when we first came home post-transplant.

She was so polite and engaged today, giving smiles and hugs to all of our favorite nurses, sonographers and doctors.  She started her morning in the lab, having her blood drawn.  As usual, she never cries and is such a champ.  I can't say the same for the blood pressures.  It doesn't matter how many ways you tell her that she's just getting her arm hugged, she is convinced that it is torture.  She sailed through her echo and EKG without any complaints.  This is such a change from a year ago when she would scream her head off while the sonographers tried to get pictures of her aortic arch.

The news was good today.  Her immune suppression levels are right where they are supposed to be.  Her CBC was great, her EKG was fine, and her echo was consistent with last time.  I can't say that it was perfect, because I don't know that she will ever have a perfect echo, but it was stable for her.  The reality is that she has minor regurgitation of her mitral valve, and she has a leaky aortic valve.  It hasn't gotten any worse from her last echo, and that is positive.  She has shown some narrowing of her superior vena cava and aortic arch, but this was consistent with her last echo.

AnnaSophia will have her immune suppression levels checked in another two months.  As long as she continues to do well and doesn't show any signs of rejection, she will not need to be seen in the cardiac clinic for another four months.  Overall, she is fantastic!  No one looking at her would know that she had a heart transplant.  She is absolutely amazing and truly a blessing. 

Thank you to all of my friends who have been praying for a good check up.  Prayers were answered.