The Children in Review

I have defaulted...big time.  I've been busy, overwhelmed and trying to figure out this whole single-mom-parenting thing.  I haven't posted updates on AnnaSophia's blog like I should have.  So, I sit here at 10:23pm, with the children tucked in their beds, me alone in mine, and I have been inspired to write an update on my children.  This is a good way to end 2010, reflecting on my reasons for living.

I'll start with AnnaSophia, since this blog is named after her.  She was the inspiration for starting this blog.  Born with severe heart defects, whisked away unexpectedly to Denver Children's Hospital when she was 9 days old, this blog was designed to keep friends and family updated on her medical condition.  What a wild ride!!! Open heart surgery at 11 days old, chest closed at 13 days old, tachycardia, transfusions, medications, heart failure, PICC lines, transplant, cardiac arrest, rejection, infections, chemo, heart caths.  This was a big part of her life.  This defined the early years of her life, but it wasn't exclusively who she was or is. 

She is AnnaSophia, a bright and shining star.

AnnaSophia smiles a lot.  She gives the biggest, squeeziest hugs and kisses EVER.  She loves to "nuggle" with me.  She loves her family, especially her brother and sister.  She loves princesses, and thinks she is one too.  She loves animals, especially dogs.  She wants to visit Cinderella's castle one day.  (Baby, I think you will, so hold onto that dream.)  If you ask her where her heart is, she points to her chest.  When I ask her who's heart is in her chest, she replies, "Mason's heart" with a sweet, big smile and both of her hands over her chest.  God love her!!!  She brings such joy to my life!  She is truly a miracle, and I feel so blessed to have my baby with me each day.

Emily is my super-sensitive, beautiful girl.  She is 10 years old now.  She is on her way to becoming a young lady.  She can't wait for the day that she is old enough to babysit AnnaSophia.  Emily loves her siblings and me as well.  She has loved horses since she was old enough to talk.   She loves dogs, especially Golden Retrievers and hopes to have another one sometime.  She is my artist.  She has amazing talent, and her drawings take my breath away.  This year, Christmas was especially stressful for the children, as their dad and I are not together.  I found her outside with her cousins, holding her sketch book and drawing nature pictures.  To watch her was one of those precious gems-of-a-moment that will be forever burned in my mind.  I love every second that my beautiful girl and I can share.

Ethan is growing into an amazing young man.  I don't use the term "man" lightly.  He is tall and handsome.  Despite his Asperger's Syndrome and challenges, he is amazing.  If I could find a man half as good as my son, I would be blessed.  He is smart, works hard, is devoted, loves his family and has a great sense of humor.  Yes, he teases his sisters A LOT.  I remind myself that he is a boy and a brother.  It's what they do...right?  He just needs someone to give it back to him big time.  He has an amazing sense of right and wrong.  He knows what kind of man he wants to be and seeks out inspiring examples of amazing men to emulate.  God love him!!!  He made the honor roll at school this year, and wowed my socks off by saying that math is his favorite subject.  I think I see an engineer in the making.

Life has been hard this year.  I don't know what the future holds for us.  This is the most uncertain year I have ever faced, but there are certain things that I cling to.  I know without a doubt that my children love me.  They are my reason for waking every day.  I strive to be a better person and provide a good life for them.  I work to raise awareness about Congenital Heart Defects to save my daughter's life.  Every motivation, everything that I do, is for them.  One day life will settle down and become less stressful.  Until then, I hug on my children daily and thank God for the precious gifts that He's given me.  I pray that 2011 will bring peace, love and stability to our lives.  Until that happens, we press on with hope, and I pray that the Lord will continue to bless us and walk with us.

Blessings to you.

Heart Heroes Gallery Update

The American Heart Association's Heart Heroes Gallery is currently located at Chapel Hills Mall in the north part of Colorado Springs.  We will have volunteers handing out information tomorrow, Saturday, January 1st, from 12pm to 3pm at the mall.  Sunday, the gallery will move to the East Library and Information Center.  This is one of the large branches of the Pikes Peak Library District.  The gallery will be located just outside of the children's area for all to see.  If you have not seen the gallery yet, I highly encourage you to take a look at it in person.  It is very moving and inspiring to see these beautiful children's faces and read their stories of triumph and bravery through their fight with heart disease.

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.

Inspiration

It's a word that I have reflected on a lot lately. I seek out people who inspire me. There are amazing people in this world who make us want to be better people. These are the people I want to learn from. I have been stunned by people who have approached me to say that my family has been an inspiration to them.  I have had others tell me that I am an inspiration to them.  Really???  Do they know how absolutely inadequate and broken I feel most days?  They find me to be an inspiration???

The online Miriam-Webster dictionary defines inspiration as:

The action or power of moving the intellect or emotions.

I have seen people interviewed on tv that have moved my intellect, making me want to be a better person.  I have felt moved emotionally as I am in awe of other's stories of triumph as they overcome difficult circumstances.  That's when it dawned on me...the people who inpsire me most are not the ones who have lived perfect lives.  I'm not inspired by people who have made all the right choices in life, but have never been faced with hardship.  Hardship and difficult circumstances can define us--either for good or bad.

It's the people who are handed difficult circumstances, who rise above the tragedy and the hardship that are most inspiring to me.  Life is tough.  Life can beat us up.  Life doesn't always turn out the way we would like it to.  What is inspiring is when people live lives of joy and love in spite of the challenges.  Inspiration comes from people who refuse to let the difficult things in life keep them down.  These people take difficult circumstances and use them for good.  They change lives and make differences.

Many times in my Christian walk, I've been told that God doesn't give us more than we can handle.  I've often laughed and said that God surely has a higher opinion of me than I have of myself.  Angela Brock is a divorced mom of four children; her youngest was born with a Congenital Heart Defect.  She started a Mended Little Hearts group in the city where she lives, and works tirelessly to raise awareness about CHD's and support other families who have children with heart disease.  She recently said in an interview on the Today Show,

"You never know how strong you are, until being strong is your only choice."

The reality is that heroes choose to be strong.  There are many people out there faced with difficulty who don't choose to be strong.  There are those who are afraid, or think that the circumstances they face are too challenging,

and they walk away...

Its out of our brokeness that inspiration happens.  Inspiring people face challenges head on with determination and love.

The New Century Bible says it best:

We know that in everything God works for the good of those who love him.  They are the people he called, because that was his plan.  Romans 8:28

We live in a fallen world.  Bad things happen.  Real heroes, inspiring people, choose to rise to the occasion and change lives.  Maybe it's just the life of their child, maybe it's the lives of many.  Be inspired and be inspiring! 

I still don't know how people can see me as inspiring, but if that's so, I hope that the people who are touched by my life will be inspired enough to influence other's in their circle.  Pay it forward, and make your life count.

I have felt led to share a video of a father who is absolutely the most inspiring man I've ever seen.  He is an amazing father!  He demonstrates in a very real, very physical way, the love he has for his son.  The first time I saw this video, I sobbed.  He is a flesh and blood example of our Heavenly Father's love for us.  Enjoy the clip about Team Hoyt.  (Don't forget to mute the music on the playlist at the bottom of the page so that it doesn't interfere with the video.)

Blessings.

Welcome to Holland

I first read this poem in the packet of information that Denver Children's Hospital gave me when AnnaSophia was admitted for her first open heart surgery. Things were so uncertain at that time. The doctors told us that with her constellation of defects (interrupted aortic arch, VSD, ASD, bicuspid aortic valve), she was over 95% likely to have DiGeorge Syndrome, and could have learning diabilities associated with that. She could likely have a stroke from the surgery, have the nerves to her vocal chords damaged from the arch repair, or have major mental retardation due to the lack of blood/oxygen from bypass and surgery.

I know that they have to prepare us for the worst, but this was so much information to be dumped in my lap. I looked down at that beautiful baby in my arms and knew that I would always love her no matter what. It didn't matter what challenges lay ahead for her, she was a gift, and I would always love her as such.

A month later, Ethan was diagnosed with Asperger's Syndrome. What??? I think I've heard of that, but I'm not sure what it is or what this means. Autism??? Really??? Me being the Research Queen, I started reading everything I could on Autism and Asperger's Syndrome. It explained a lot, really. Without having an official diagnosis, I knew that Ethan was different. I knew that he didn't easily fit in with the rest of the world, but that was ok. We adapted. We aimed for success.

As time moved on, AnnaSophia showed absolutely no signs of learning disability. She recovered well, and genetic tests showed that she was one of the rare kids with her constellation of defects who did not have DiGeorge Syndrome. Even though I breathed a sigh of relief, I didn't love her more or less because of it. Ethan got the help he needed, and I strived to understand him better. I was able to make changes in our home that helped with his success.

Today, both of them are doing really well, in spite of challenges and setbacks. They are amazing! The analogy that is painted in the poem Welcome to Holland is so beautiful. I planned on going one place, but life took us somewhere else. It's not bad, just different. Once you embrace the different place where you are, you can enjoy the beauty that is there. It's not bad, just different.

Please enjoy the video, and don't forget to mute the music at the bottom of the page so that it doesn't interfere with the video.

Blessings.

Before My Heart Stops by Paul Cardall

This is an absolutely inspiring video promoting Paul Cardall's new book, Before My Heart Stops. Just this short clip brings me to tears everytime as I remember my own daughter's heart transplant journey. My perspective on life has changed so much since watching my daughter teeter on the brink of death many times. I view life differently, and I cherish every moment with my children like never before. They are my life, my reason for living, and I never want to feel like I have any regrets. I want to know that even in my brokeness as a human being, that I have been the best mother I can be. There is no greater calling than to be a parent--to love our children the way that the Lord loves us. We are their example of what a loving God is here on earth. Each day I fail miserably, but I will continue to press on, love them, lead them and let them know that they can always count on me.

Mason Hibbert, Our Hero

Two years ago, our lives changed in a way that we could have never fathomed. From the moment AnnaSophia was born, she was fighting for her life. She had such prolific defects, I didn't think that there was anyway that a child like her could live. I was amazed at the surgical techniques the doctors in Denver used to repair her heart, but she still struggled. She limped along on the heart she was born with, not realizing she was so sick. She smiled and cooed her way through heart failure that progressed rapidly. Finally, we were told that she would not be able to live much longer with her heart. She had heavy duty drugs pumping through her veins just to keep her alive. Her only chance at life was a heart transplant.

As I write this at 1:45am, I realize that two years ago, AnnaSophia was in surgery having all of her lines placed and being prepared to go on the heart/lung machine. We measured time by status updates from our nurse. We prayed that she would be strong enough not to die on the table before her special heart arrived.

Even though we were dealing with such a frightening, yet hopeful situation, I was keenly aware that there was another family that was dealing with the pain of losing their child. I cried and prayed for my child, but I also cried and prayed for this family that I didn't know. I was in awe that a family could make a decision to donate life during the most difficult time in their lives. Through their pain, they chose to save other's lives.

I am still in awe of the Hibbert family and the gift they gave to not only my AnnaSophia, but to two other people as well. They are the very definition of heroes in my book. Mason was a vibrant, big, 18 month old boy with a smile that could light up a room. His parents told me that he was very giving and loved to share. These qualities held true to the end for Mason who in his passing saved lives and shared his heart with my little girl. Thank you Hibbert family, and I pray that the Lord of peace will continue to shower you with comfort.

Fakes

I feel like I have certainly been on a roller coaster ride for the past two and a half years. Our lives changed dramatically with the birth of AnnaSophia. For my children and I, we never knew that we could love someone like we love AnnaSophia. I have seen Ethan and Emily grow by leaps and bounds--not just physically, but I have seen their hearts grow with love and compassion for their baby sister with the special heart, and all children who we have been blessed to know, who have had their own set of challenges.

At times this roller coaster has not been just about AnnaSophia's medical issues. We have all struggled with our faith at times, wrestling with God. We have seen our friendships tested and truth revealed, sometimes in very painful ways. I tend to be a very trusting person, taking what people say at face value. Maybe I should be more cynical, but I have always tried to see the good in people.

Lately, I have really struggled with truth and lies. I love truth!!! I really, really don't like lies and liars. I'm not talking about little white lies that we tell to prevent injury to others. I'm not talking about responding to the question of how is your day with "Fine" or "Good" when you are really having an awful day. I'm talking about something more pathological. It seems that I have encountered many people within "the church" who have a nasty habit of lying. By "the church", I mean the non-denominational, evangelical community. I have seen people in church, presenting themselves as the perfect christians, who know all the right "catch phrases" and "christian-speak" so as to make people think that they are somehow very enlightened, mature christians. The reality is that all this seems to serve is to paint a picture to the world that they are something that they are not.

I don't presume to know what is in a person's heart, but I do think that I am a pretty good judge of actions. I have seen church leaders pursue relationships that put their marriage vows at risk, I have seen people say one thing and admit that it was a lie later, just for the purspose of appearing like the perfect christian. Honestly, I battle being disillusioned by the things that I have seen and experienced.

The heart of the matter is that we are all sinners. We are not perfect. I just don't like people who pretend to be. Be real!!! Be real to yourself, be real to God and be real to others. Wrestle with God, search for answers, surround yourself with people who will sharpen your faith, but for goodness sakes, make sure that they are what they say. I admire people who are honest about their faith more than people who say all the right things, but are fakes.

The Heart of the Matter

I have seen many Congenital Heart Defect Awareness videos. Some are really very good--these are the ones that I usually pass along to share. Even though the goal of all awareness videos is the same, some sadly are fairly amateur and difficult to get through.

Of all of the blogs I follow, I'm very impressed with Baby Hearts Press Blog. I have a link to it on the sidebar. She posted a link to The Heart of the Matter, which is putting together a documentary which should be completed by winter 2011. The pilot for this documentary is absolutely amazing! This is the kind of stuff us parents of cardiac kids have been working towards for a long time. We are behind the curve. CHD's are the number one birth defect in the world, killing more children than all childhood cancers put together. Unless you have been personally touched by someone born with a CHD, most people don't even know about children and heart defects.

If you have an extra 17 minutes, please take the time to watch the pilot for this documentary. Help me spread the word, and let's see if we can make an impact by spreading CHD awareness before it's even officially released.


http://www.congenitalheartdocumentary.com/CHD_Website/Videos.html

The Blessing of Special Needs

Parenthood can be challenging. We all think we are the best parents...until we have our own children. I have a degree in Psychology, I was a teacher, and I thought I could handle most anything thrown my way involving children...afterall, challenging children just need more discipline, right?

Then I had my own. Three amazing children, all with their own special issues. I have reflected on the statement that "God will not give you more than you can handle" quite often. I really think that He thinks more highly of me than I do. What I realize now is that I can handle it...with His grace.

Ethan (12) experienced severe reflux as a baby. Despite giving my all, he was diagnosed with failure to thrive and Eosinophilic Esophagitis by six months old. He had surgery for severe gastroesophageal reflux at 7 months of age. He continues to develop new food allergies every few years. He also has Asperger's Syndrome, a Mood Disorder NOS (not otherwise specified), and mild Tourette's. He has battled outbreaks of Petechiae from low platelets, and even bravely fought off a virus that caused him to experience two weeks of liver failure and dangerously low platelets. He has since fully recovered from that virus, but I do watch him closely. Despite all he is an amazing kid who is absolutely brilliant.


AnnaSophia (2) was born with awful heart defects. She had her first open heart surgery at 11 days old, experienced Junctional Ectopic Tachycardia (JET), heart failure and pulmonary hypertension. This led to her heart transplant almost two years ago. After transplant, she rejected and was treated successfully. She also has battled four CMV (cytomeglovirus) infections. These infections require special medication and treatment, but thankfully, she has been free from these infections for a year now. I was told she might suffer stroke, brain damage and learning disabilities. She has not had any of these complications, and she is truly our miracle girl.


My beautiful Emily (9) is sandwiched between Ethan and AnnaSophia. She also was born with severe gastroesophageal reflux and underwent surgery in Denver at 6 weeks of age. She has been on her share of medications to manage her reflux. She also deals with significant allergies. (Small problem in the grand scheme of things, except for the fact that she is allergic to anything with fur, and she adores all animals.) As Emily put it one day, "Mommy, I'm special too, because I'm the only one who is normal." Bless her heart, I couldn't believe my ears. I hugged her and told her that she was indeed special, not because of whether or not she had something wrong with her. She's special because God made her and loves her, and I love her.


I think that some people are afraid of the term "special needs", but I believe that a child who is different, for whatever reason, is a blessing. Ethan sometimes gets lost in his own autistic world, but when I see progress, or he allows me into his world, or he has success in the "neurotypical" world, it's like he just won the Olympics. This past year, I stopped homeschooling Ethan and enrolled him a school with an Autism Program. He excelled greatly, and I couldn't be more proud of him. He even made it on the Battle of the Books team all by himself! He read 40 books and was part of a team answering questions about these books. Think spelling bee style. He was an amazing team member with an incredible memory for details. He did this all by himself--no help from paraprofessionals or special teachers. I couldn't have been more proud.

Every developmental milestone AnnaSophia reaches is a reason to celebrate. Every "heart-iversary" is a reminder of how victorious she is. She is so smart--sometimes too smart, picking up on her older brother and sister's bad habits.

Emily struggles with having two siblings with challenges at times, but she has grown up so much. She struggles with her relationship with Ethan, sometimes getting frustrated. She is very good at entering his world to play with him, but has a hard time understanding why Ethan can't reciprocate. Emily has an amazing heart and capacity for love. She is so good with both her brother and sister, but I am painfully aware of how much she needs one on one time with me too.

Our family is different from others in many ways, but I feel so blessed with the children I have. I get so excited when Ethan picks up on a person's social cues and responds appropriately. Success!!! For many families, that's not even on their radar. I rejoice in the wonder that AnnaSophia experiences from being outside playing with a ladybug. If it were not for her transplant, she wouldn't be doing that right now. Emily and I continue to grow closer and closer. She is an "old"nine year old and continues to mature quickly. She has seen things that most nine year old girls haven't, and I'm sensitive to the love and direction that she needs from me.

Our family is unusual in many ways, but I wouldn't trade it for the world. There are times when life is really, really tough, but we manage and come out stronger. There are also times of pure joy. The reality is that God hands each of us different circumstances. There are no perfect people and no perfect families, but one thing I do know is that "special needs" need not be scary. In fact, if you allow yourself to, you might be more blessed by knowing someone who is "different".

May 2010 Cardiac Clinic

These pictures are from AnnaSophia's latest Cardiac Clinic visit to Denver Children's Hospital's Heart Institute. Our day usually starts at 5am as we make our trek to Denver. We arrive at 7:15 am and start out in the lab having her cyclosporine levels checked. She amazes me, because she never cries. It's just part of her life. We then journey up to the third floor, where she get checked in. After her temperature, blood pressure, height and weight are taken, we get comfortable in an echo room. We have gotten smart after our countless echocardiograms and bring a princess movie for her to watch. She was so good and let the sonographer get really good pictures this time. After she is "de-slimed", she has her EKG. She actually doesn't mind and seems to be fascinated with all of the wires attached to her. By the time she saw her transplant coordinator, she was exhausted and not wanting to cooperate a whole lot.

The good news is that everything with her heart looks great. As long as she continues to do well, we go to clinic every 4 months and have her levels checked every two months. I can't tell you how blessed we are to have such great care for her so close by. They are truly our "angels" watching out for our AnnaSophia.

Please Pray

I write this with an urgent need for prayer. One of our transplant friends, Garrett, is at Denver Children's Hospital in the CICU. Garrett is 10 years old, and he received his second heart transplant two years ago, shortly after AnnaSophia had her first open heart surgery. He is an amazing and brave little boy. He has been in Denver for about a month and a half being treated for rejection. We thought he was doing much better, but the results of his biopsy on Friday showed that the rejection is worse than ever. Our hearts our breaking for him and his family. We know all too well how scary it can be to have challenges like this with your precious child. You can follow Garrett's story at www.garrettsjourney.blogspot.com. Please pray for him and his family during this scary time.

American Heart Association's June 12th Heart Walk

This year AnnaSophia is featured on the American Heart Association's website for the June 12th Heart Walk. What an honor to see our little heart warrior featured as an inspiration to help raise money to find a cure for Acquired and Congenital Heart Disease! If you feel inspired, please help support our team either financially or by walking with us. Let's raise awareness and find a cure!

Reassurance

Sometimes reassurance is worth more than any treasure in the world. Parenthood is challenging enough, but when you have a child with a Congenital Heart Defect, it can be especially challenging. Part of the challenge is trying to live as normal a life as possible, while also being vigilant in monitoring your child and protecting him or her from illness. Because AnnaSophia has a heart transplant and is immune suppressed to keep her from rejecting her heart, I work really hard to keep her well. She is two years old and knows how to use the hand sanitizer while we are out. Ok, I'm going to reveal just how "crazy" I am: I have even been known to wipe her shoes down with Lysol Wipes just so she could play with them in the house. If you really pay attention to where you walk, you just might do that too!

I have been watching AnnaSophia's trends with eating for the last two months, and I was concerned. She doesn't each much. Is it her just being a toddler, or is it her heart? She has chronic loose stools--not a fun issue for either of us. She is really irritable, having temper tantrums daily. I know, I know...she's two. She is two in all her glory, but subtle signs like this can also mean trouble for her too.

Yesterday, we went to Denver Children's Hospital to check her cyclosporine levels, CBC, and CMV. She had a full work up in Cardiac Clinic: an echo, EKG, and exam by her transplant coordinator. The great news is that her heart is great! I cannot even express what a huge sigh of relief that was for me! I'm also not imagining things, though. She came into clinic with a low fever and she was very irritable. She also had not eaten much. After her exam, Jilayne told me that her problem was teething. Not just normal teething, but EXTREME TEETHING. Her immunosuppressant, Cyclosporine, has caused a thickening and toughening of her gums. It makes it very difficult for her to cut teeth. What might normally take a month for a tooth to break through, might take three months in her case. My poor little one! You would think that after all that she has been through, teething would be a piece of cake, but not so.

Honestly, I'm amazed by her every day. She is one tough cookie! So we continue to plug along, and I'm thankful for every moment with her. She is constantly an inspiration to me, and I feel blessed that God has chosen me to be her parent.

NationalMLH.wmv

This is a video created by Mended Little Hearts, a national organization that supports families whose children have been diagnosed with Congenital Heart Disease. There are chapters in cities all across the United States, and we have a local MLH group here in Colorado Springs. Check us out at www.thebeatgoesonmlh.blogspot.com. Spread awareness and help save lives!

Children's Cardiomyopathy Foundation Awareness Project

Cardiomyopathy or heart failure is just one type of congenital heart defect that a child can have. The scary thing is that some cardiomyopathy is congenital (meaning that a child is born with it), but sometimes a perfectly healthy child, born with a perfectly healthy heart can acquire heart failure as a result of a virus. As a sidenote, Julia, featured in this montage, did receive her heart transplant. She was transplanted a little before AnnaSophia, and we got to meet her and her mom during Cardiac Clinic at Denver Children's Hospital.

HINT: To hear the video montage without interference from the blog's music, just scroll down and mute the music.

Refocused

I am very sorry to all who have been checking our blog, and found that there have been no new posts. I have received emails and phone calls from people wondering how AnnaSophia and our family have been. I honestly needed a time of reflection and refocusing. I have felt it necessary to pull inward, focus on the Lord and my family. I have asked the Lord, "Where do I go from here? What do I do next?" I waited...and waited...and joined Facebook. Oh dear!



Actually, Congenital Heart Defect awareness has been so heavy on my heart. It's something that I HAVE to do. Like I need air to breathe and water to drink, I need people to know about the number one birth defect. I need people to know that Congenital Heart Defects kill more children than all childhood cancers put together. I need people to know how underfunded this cause is. For every dollar that is donated to the American Heart Association, only one penny goes to CHDs. This is unacceptable!!! When 1 out of 100 births results in a baby born with a heart defect, there should be money pouring into the AHA specifically to help fund research in this area. Plain and simple: MONEY=RESEARCH=CURE. At this point, doctors don't even have a clear understanding as to the cause of CHDs.



Locally, I have become part of a group called Mended Little Hearts. This is a support group started by some amazing moms of children with CHDs, who want to be able to provide support to families affected by childhood heart disease and to raise awareness to the general public. I encourage anyone who has a child with a heart defect, or any family that would like to provide support in a "mentor" capacity to contact Melissa or Alicia via http://www.thebeatgoesonmlh.blogspot.com/. We still need families to join so that we can become a chapter in our own right.

FAMILY UPDATE:

AnnaSophia has been doing well. She turned 2 December 31st, 2009, and she is such a joy. She loves princesses, babies and horses. AnnaSophia talks daily of wanting to sleep in Cinderella's castle. One day, sweetheart, you just might get your wish. January, unfortunately, brought illness to our house like never before. Ethan battled pneumonia, Emily was sick several times, and ultimately, AnnaSophia got sick. Not just a little sick-the entire household was flying the white flag.

AnnaSophia had a high fever, oxygen sats in the high 70's to low 80's, and ended up back on oxygen. That was not fun. Try to keep oxygen on a two year old. We put the cannula on her stuffed animals and her princesses. There was absolutely no convincing her-she just wouldn't wear it. Finally, Ethan came up with the idea of taking a paper cup and inserting the cannula into it. We made a homemade blow-by mask and cranked up her O2. Congratulations Ethan! Your invention worked like a charm!

All is well now. We are still watching AnnaSophia closely for signs of rejection, as that can happen after a bout with illness. We continue to pray that her immune system was not revved up too much and that her heart is "safe". Thank you to everyone who has prayed for and stayed in contact with our family. We appreciate it more than words can express.