Charley's Heart

Charley's RAK - Pencil to Paper

Wednesday, May 15, 2013

On Christmas day, as we were wrapping up our celebration at my mom's house, my sister Angie handed Matt and me a flat cardboard package. She said that the package was given to them (her and her hubby) by a friend of theirs...and that the package was given to him by his brother, Kurtis. (Got that? Angie/Doug-->Friend-->Friend's brother, Kurtis!) More simply put, it was a package from someone who is a total stranger to Matt and I.

Inside the package Matt and I found a letter that gave some background on, Kurtis. I won't share all of the details, but the long and short of it is that life hasn't always been sunshine and roses for Kurtis, and he hasn't always made the best decisions. It went on to say that despite it all, Kurtis has a huge heart. He has 2 children of his own who he would do absolutely anything for...and he thinks what happened to Charlotte *%#@&@ sucks (I couldn't agree more...but had to laugh as I was reading this out loud to my family!). The letter also eluded to the fact that Kurtis has a special talent, and that as a part of Charley's RAK, he wanted to share that talent with the two of us.

I wasn't prepared for what I saw next...

Our sweet little girl. Her perfect little face. Her crazy hair. Her toothless grin.
One of our favorite pictures, translated on to a plain white sheet of paper by Kurtis's pencil.

Kurtis, I have never met you, I probably never will, but I need you to know how much this picture means to Matt and me. You have an amazing talent, and we are so honored that you chose to share it with us. Saying thank you just doesn't feel like enough...

...but thank you. From the bottom of my heart, thank you.

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Books for Charley - A Collaboration

Monday, May 13, 2013

I am super excited about todays post for SO many reasons...

1. I love ALL Month of Chuck posts!

2. It showcases another example of how word of Charley's Heart and Books for Charley has spread.

3. It helps me honor the mission of another family who has experienced the unexpected loss of a child and to help bring attention to a cause that is very near and dear to their hearts.

4. Its a great example of families supporting families...

About a week and a half ago I was introduced to a beautiful young woman named Cady.

On May 30, 2007, Cady was driving a friend home from a movie when her car was struck by a distracted 16 year old driver as she entered an intersection. The conditions were clear, the other driver was not impaired by drugs or alcohol- it was simply a matter of a young driver not paying attention to the red traffic light or seeing the cars that were moving in their path...something called inattention blindness. Cady’s brain was severely traumatized in the collision and she died just hours later.

In the months that followed Cady's death there were other crashes that were very similar; most involving young drivers, all resulting in at least one death and all seemingly highly preventable. It became clear to Cady's parents that the issue of driving while distracted was not being addressed strongly enough and that younger drivers were at higher risk (although all drivers are affected). Distracted driving was also not being investigated as the cause of unexplained, serious crashes and there were no laws limiting cell phone use for all drivers.

In an attempt to shine some light on this subject, Cady's family started the C.A.R. Alliance for Safer Teen Driving...C.A.R. being Cady's initials. C.A.R. is an organization that specifically addresses distracted driving and appeals to all drivers to eliminate distractions as they drive for the sake of victims, like Cady, and for their own safety and well being too. Through the use of facts, the science of distractions and Cady’s own story as teaching tools they are raising awareness and the level of discussion around an epidemic that takes more teen lives each year than the next 3 leading categories of death combined (suicide, violence and disease).

Each year over Memorial Day weekend, C.A.R. holds Nebraska's ONLY annual event that supports distracted driving programs across Nebraska and western Iowa...a walk that not only celebrates their Cady, but also provides a means for them to educate others in hopes of preventing accidents like the one that took her from them. Their annual walk will take place at Lake Zorinsky (Omaha) on Saturday, May 25th. I encourage those of you in the area to get out and walk in support of this amazing organization!

Click HERE to register for the 2013 C.A.R. walk!

So what does this have to do with Charley's Heart and "families supporting families??" Well, I'm THRILLED to report that we have been invited to be a part of Cady's walk this year! We will have a table set up on walk day and there will be boxes to collect new children's books, all which will be included in our 2013 Books for Charley donation! Amazing, right?! I'm honored and humbled to be a part of such a special day and for being given the opportunity to bring Cady and Charlotte's heart stories together.

Again, the walk is SATURDAY, MAY 25th at Lake Zorinsky. Register HERE!

May 30th will mark 6 years since the Reynolds family lost their daughter, Cady.

One day later we will mark 2 years without Charlotte.

Even if you decide not to walk, I ask that you hold each of our families close these next few weeks as we brave these heartbreaking anniversaries.

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Books for Charley {2013} - Making a Difference

Wednesday, May 8, 2013

A few months back, I received an email from my aunt Darla in California that immediately put a smile on my face. In her message she told me about a group that she is involved with known as "Making a Difference." This group of women, all but one a complete stranger to me, wanted to hold a book drive in support of Charley's Heart. I was excited, honored, and immediately intrigued by the mission of this group.

In their own words, "Making a Difference" is a group for ALL women. They meet monthly to enjoy hors d'oeuvres, a glass of wine, a little shopping (vendors invited) and to just be with each other – to support each other. You might be wondering how Charley's Heart fits into these gatherings. Well, staying true to the name "Making a Difference," each month members of the group are invited to present a cause that they would like to help support...clothing donations, schools in need of supplies, Relay for Life teams...you name it. My aunt chose to make Charley's Heart her cause back in February, and the group has been collecting books every since! Collections will take place through the month of May, at which point they will be donated to the Children's Hospital of Orange County. We're so excited for Charley's Heart to hit the west coast.

A special thank you to all of the women in "Making a Difference" for helping us honor and celebrate our little girl! I hope that you all realize just how much of a difference you are making in our lives, and in the lives of the children on the receiving end of your donation.

Making a Difference: Women Supporting Women - Supporting Others

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work. One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up. As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?" The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

Adapted from The Star Thrower

by Loren Eiseley (1907 - 1977)

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Books for Charley {2013} - Meet Madison!

Tuesday, May 7, 2013

Oh my...I wish that I could come up with the words to tell you how much I love our next Books for Charley kiddo. In today's post want to introduce you to Madison...a little girl who's big eyes, sweet grin, and dinnertime disaster pictures can always make me smile! I have a huge soft spot in my heart for Miss Madison and when her mom, Brandi, contacted me last year about becoming a part of our 2013 event, I couldn't have been more excited. Harrison was just as excited and decided to wear his Superhero Madison onesie to celebrate!

My friendship with the Gandy family is a perfect example of the unique relationships that are forged within the heart community. We have never "met" face-to-face, in fact, there are almost 1,000 miles separating our two families...yet I call them "friends" as if we have known each other forever. And for that, I consider myself blessed.

I'm so excited to say to you all today....MEET MADISON!

On Dec. 6th, 2010, my husband and I went to the OB to find out if our second little miracle would be a boy or a girl! What a HUGE shock it was when we first heard the words, “We think something is wrong with your baby’s heart. We cannot see 4 chambers in her heart.” From that moment on, our world was forever changed.

After a week full of appointments, Madison was diagnosed prenatally with HLHS and Dextrocardia. We were given three options: termination, compassionate care, or a series of 3 surgeries that could allow her to live with half a heart. There was no question, we were going to give our little girl a chance at life!

Madison entered the world on May 2nd, 2011.

We traveled to Texas Children’s in Houston Texas forcare. She was FULL of spunk right from the get go. The running joke was that she wanted the entire hospital to know that her lungs worked perfectly fine! Her heart did end up a bit more unique than expected. She was indeed single ventricle and had dextrocardia, but she also had pulmonary atresia and stenosis of the LPA. The dextrocardia was also a bit atypical in that her heart was not just on the wrong side, but was actually physically twisted. Her cardiac anatomy has some other “fun” qualities that make her heart extra special, but those are her main battles.

Madison just turned 2! What an amazing day as we celebrate her incredible life. She has survived 2 heart surgeries and 3 heart caths so far. We have more on the way with a heart transplant likely somewhere in her future (though we are hoping very far in her future!).

When I was pregnant I prayed above all else that she would be happy, feel loved and feel safe. I was so afraid with her journey her life would just be filled with difficulty. Though it has its challenges, I can honestly say that she is the happiest child I have ever been around! She is so full of spunk and life. She is sassy to the core! She goes non-stop and she is such a fighter. She ADORES her big brother Jack, who equally ADORES her. She is just absolutely thriving. I could not be more proud to be a heart mom to such an amazing warrior!

Our family is so grateful to get to take part in Books for Charley. I first “met” Kristen and Charlotte when I was expecting Madison. Between Kristen’s writing and Charlotte's incredible beauty and eyes (as seen in every single picture!), I was in love, inspired and given so much hope. My heart broke when I learned that Charlotte had earned her wings. To this day, Charley and her family hold an incredibly special place in my heart. I cannot wait to collect books to honor this special little girl!

All of the books collected by Madison's family will be donated to Texas Children's Hospital cardiac floors. They will make their way to the CVICU, step-down units, cardiac rooms and to the cardiology clinic where heart kiddos are seen for regular appointments. Learn more about our adorable friend, Madison, by visiting her Caring Bridge site at www.caringbridge.org/visit/gandyfamily. You can also find her on the Project RedButt page over at charleysheart.com She was one of our first "official" monkey recipients!

Thank you, Gandy family for being such huge supporters of our family and of Charley's Heart. Happy book collecting and I can't wait to see what you come up with for TCH.

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Books for Charley {2013} - Meet Logan!

Monday, May 6, 2013

In my Books for Charley post last Thursday I mentioned that we have two brand new families joining our collection this year. Much like Aly, Claire and Mason's collections last year, the books that these families collect will be donated to their OWN hospital/clinic. These hospitals, the employees who work in them, and the other families that become a part of our lives as a result of hospital stays, have such profound effects on our lives. These book donations, though small in the grand scheme of things, are just another way for us to give back to them for all that they do.

The first kiddo that I want to introduce you all to is Logan. I first met Logan through his mom's blog, "When Life Hands You a Broken Heart" and quickly fell in love with his sweet grin and goofy antics. He's definitely Mr. Personality!

You might recognize the blog above as one that I have mentioned on Little Miss Ritchie before. Logan's mom, in my humble opinion, is kind of a big deal in the heart community. Through her yearly blogging event "Every Heart Has a Story," heart families are able to share their personal journeys and connect with one another. We've taken part in this event for the last 3 years, and Stefenie also shared Charlotte's story as a part of her CHD Awareness series "Interview with a Heart Mom." I was so excited when they agreed to help with Books for Charley!

Without further ado.....MEET LOGAN!

Our lives were shattered with the utter of four little words, “I hear a murmur.” As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock. In total disbelief that this was even happening I felt numb. I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.

What was supposed to be a happy day filled with our new baby boy’s two week well child checkup, a photo session with our three year old and his baby brother and fun time with Grandma quickly turned into every parent’s worst nightmare. When the tests were complete we returned to the office to await the results. Making the phone call to my husband who was at work was not only emotional but very difficult.

In a matter of minutes your life can change forever.

Three days later we found ourselves sitting in an exam room at the Children’s Hospital, an hour and a half away from our home, reeling from the news we had just been handed. We received confirmation that something was indeed wrong with our baby’s heart but what we thought was just a Ventricular Septal Defect turned out to be much more severe. Our precious little guy not only had a VSD but he also had D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a Right Aortic Arch. All of which were killing him. His oxygen saturations at the time of his diagnosis were in the 60’s and he was in heart failure. He required immediate intervention in the pediatric cath lab to save his life. Those final moments that I rocked him before they took him into the cath lab were the most agonizing moments of my life. I was devastated by his diagnosis, fearful of the unknown and terrified of losing him.

After many tears and several hours later he came out of the cath lab and was placed in the NICU. For the next three days we were thrust into what seemed like a foreign land with a foreign language. We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail. It was overwhelming emotionally, physically and mentally. Yet we were so unbelievably thankful to have our baby boy still with us.

We were able to take Logan home for two weeks before it was time for his first heart surgery.

When Logan was five weeks old he had his first heart surgery, the BT Shunt. Handing my baby over again to the arms of strangers was incredibly hard. I was a wreck the entire time he was in surgery and praying that he would make it out. Several hours later he did and seeing him for the first time after surgery was quite traumatic. They show you pictures in a book prior to surgery to try and help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like. The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes. It was absolute torture not being able to pick him up and swaddle him in my arms.

Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way. He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube. Being away from our three year old son, Wyatt, for so long was hard on all of us. He came to visit on the weekends but it was so upsetting to him and us every time he had to leave. All we wanted was to be together again and once Logan was stable enough we did.

Logan was still very sick when he came home. He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube. We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.

When Logan was ten months old he had his second heart surgery, the Rastelli. This time around we were more prepared and took the speed bumps along the way post op a little better. His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection. During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit. Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.

Brining him home from this surgery was such a huge celebration for us. It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again. Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair. We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was. When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again. We were devastated because we had originally been told to not expect surgery for a few years, not months later. Thankfully the trip to the cath lab was a success and it bought us some time.

Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract. This surgery was one of the hardest for me personally. It was very different than handing over my baby that I barely knew. This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life. The thought of having that ripped away from me was agonizing. But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.

Since then Logan has grown into a vibrant free spirited six year old little boy who lives each day to the fullest. He is sweet, silly and funny. Looking at him now you would have no idea all of the things he has been through the past six years. He started kindergarten this year and has been busy making friends, something he has wanted for so long.

Every person in our family has been changed by this journey. While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries, we wouldn’t trade it for anything. It has made us who we are, brought us all closer and taught us so much about what is really important in life.

We are so excited to be taking part in Books for Charley and we hope to collect as many donations as possible for the University of Iowa Children’s Hospital!

To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com

Thank you, Stefenie, for sharing Logan with all of us and for agreeing to help with this years Books for Charley! As an Iowa girl myself, I'm super excited that the University of Iowa Children's Hospital will be a part of this years event!

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Books for Charley {2013}

Thursday, May 2, 2013

Books for Charley

What's the first thought that comes to mind when you hear the word MAY?

Sunshine?

Flowers?

Impending summer break?

Yeah, yeah, yeah....those might be the more popular responses....but when I hear MAY, I immediately think Books for Charley! In a month filled with so many up and down emotions, it feels good to welcome back something familiar each May...something that is always guaranteed to put a smile on this mama's face!

Since our innagural collection in 2011, Books for Charley has generated almost 3,400 books, all of which have been donated to hospitals and clinics who specialize in caring for children born with congenital heart defects. Last year we invited several other heart families to take part in our Books for Charley collection and were totally blown away by the response they received. Aly, Mason and Claire's families have all graciously agreed to participate again this year (WOOHOO!) and I'm thrilled to announce that we'll also be welcoming two NEW families to the group. Check back next Monday and Tuesday to meet our newest additions!

New to Books for Charley? Click HERE to learn about our yearly book collection and for posts about previous donations!

We would love to have you participate in this year's collection, and there are so many ways to support our cause. Some have chosen to hold "Books for Charley" birthday parties while others have created flyers/donation boxes to set out at work. This year we've even had a local high school student who incorporated a collection into his senior project. Whether you participate on a larger scale or simply donate a book or two, each contribution makes a HUGE difference.

How to Donate:

Local drop-offs: Please email us at charleysheart@gmail.com if you would like to coordinate a drop-off in the Omaha/Lincoln area. We've got family in all corners of town so we'll work out whatever is most convenient for you!

Harlan, IA donations: If you live in the Harlan area and would like to make a donation, books can be dropped off at 1407 Willow Street (Jan Goeser). Please contact her if you would like to coordinate a drop off.

Mailed donations: Last year we had books come in from all over the country! If you would like to send your donation through the mail, please use the address listed below.

Charley's Heart

2730 NW Dahlia Drive

Lincoln, NE 68524

Just a reminder, these books are going to sick kiddos in hospital and clinic settings. Because of this, we ask that you send NEW books only. Less yucky germs that way! :)

PayPal donations: Click HERE to be directed to the Charley's Heart website. From there, look for the "Donate Now" button on the right hand side of the screen. This was a HUGE source of our collection last year with more than $1500 in donations received during the month of May.

Here we go again, sweet Charley Bear...Year #3 of Books for Charley is here and I have a feeling that it's going to be the biggest yet. I hope beyond all hopes that we make you proud!

On your mark....Get Set....GO! Book collections START NOW!

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Month of Chuck

Wednesday, May 1, 2013

May is going to be a BUSY month here at Charley's Heart, filled with books, books and (hopefully) more books! Tomorrow we'll be kicking off our 3rd annual Books for Charley event and I'm so excited. We've got familiar faces joining us in our effort this year, and are adding a couple of new ones to the mix as well. Here's hoping for another BIG year and for lots of books for us to share with Omaha Children's Hospital and Medical Center.

Also, feel free to check out my 'Month of Chuck' posts over on Little Miss Ritchie. I'll be posting some special memories of our sweet Charlotte each day in attempt to bring some sunshine to an otherwise very difficult month. I will post anything directly related to Charley's Heart on this site as well, but most will only be on our personal site. We kicked things off today with a little blog makeover.

Happy May Day everyone!

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Charley's RAK - Pencil to Paper

Wednesday, May 15, 2013

Books for Charley - A Collaboration

Monday, May 13, 2013

Books for Charley {2013} - Making a Difference

Wednesday, May 8, 2013

Books for Charley {2013} - Meet Madison!

Tuesday, May 7, 2013

Books for Charley {2013} - Meet Logan!

Monday, May 6, 2013

Books for Charley {2013}

Thursday, May 2, 2013

Books for Charley

Month of Chuck

Wednesday, May 1, 2013

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