Ben.

This past week, through Facebook and other forms of social media, I became aware of the story of Ben Breedlove. He was an 18-year old young man from Austin, Texas who suffered from hypertrophic cardiomyopathy (HCM). On December 18th he posted a two part video telling his story on a series of handwritten index cards. He talked about the times he had cheated death and how his life was spent coping with his condition. I saw the videos posted from several heart families that I am friends with on Facebook who made a point of stating not to watch them unless you had your tissues ready. I haven't watched them until today for this reason and I have to say, they were right. 

   

These videos really hit home for me. While Lukas' heart condition is very different from HCM, seeing those words from this brave young man struck me deep. Through my tears, I couldn't help but think of Lukas. Someday, he is likely going to feel some of those same things. The disappointment of not being able to play some of the same sports as his brothers, being fussed over, getting sick, having surgeries, doctors appointments, the whole nine yards.  With each card, all I could do was look at Lukas and think of him; how his heart condition will affect him and how his feelings toward that condition will develop and change over the years. I can't say I know what it feels like because I've never walked in those shoes myself. But seeing him, seeing Ben Breedlove on that screen telling his story...well it puts things in perspective. 

Today, I'm snuggling my boy extra tight. I'm sucking the marrow out of life and relishing in every good day he has. Mostly, I'm thanking God that he's still with us. I will spend everyday for the rest of my life being grateful and feeling blessed that I get to know this darling boy and call him my own. Seeing Ben's story left me with a new perspective today. What these kids deal with is real and its so hard. They don't get to breeze through life. They cope with things that are far beyond my level of comprehension. They feel fear and worry over things that children their age shouldn't have to.  Yet somehow, despite it all, these kids keep going. They cope and they go on living. They show people like me what it means to really live. What it means to never take things for granted. These kids do big things and they make their mark on the world. They take each day as it comes and they learn to shape their world despite their heart conditions. They possess courage and strength that can't be depicted in words, only felt in the heart. That's something to be admired. 

So to Ben Breedlove and all the other heart kids in our world - you guys are heroes. You don't have to be invincible or bulletproof to be miraculous. You guys are real life heroes. Each and every one of you. 

Happy Friday friends. Until next time...

Looking Back.

Lastnight I was peering over my husband's shoulder and I just stared at Lukas a moment. He was smiling in his sleep and purring like a little kitten. I smiled a great big smile and laid my head on my pillow and just thought back. I thought back to where we were and how far we've come. 6-months ago today Jonathan and I went through the hardest day in all of our lives. We walked our littlest boy down to the operating room and said "see you later" as we watched the surgical team walk away. We had been through a hellacious weekend and just a day earlier signed the consent forms to allow Dr. Turrentine to work his magic and repair Lukas' broken heart. I'll never forget the emotions that swept over us as we got word he had been placed on bypass and his operation was underway. I'll never forget biting my lip and praying to God Lukas would come off bypass okay as we awaited the official word from the OR. When that update came and we found out our boy was okay and he had made it through his first open heart operation successfully, I'll never forget the gratitude I felt in my heart. For you all, for Dr. Turrentine and his team, and for our baby boy.

our baby boy June 18th - two days before his operation

These past 6-months with Lukas have been a sheer blessing. To describe each day as any less than magical wouldn't do it justice. He's brought so much into our lives. He's changed my outlook on this world and he has given me a passion unlike anything I've ever known. As we approach the 1-year mark from the day we received his diagnosis, know this. This past year has not been easy. Its been the scariest, most terrifying year of my life, but its also been the most miraculous. We've witnessed a true miracle and we get to spend every day of our lives watching that miracle smile and laugh. That's an amazing gift. This Christmas has an entirely new meaning for our family. We are basking in the joy of what Dr. Turrentine and his team did for our son. They gave him a second chance at life. They made sure his story was a successful one. I know not all families are so lucky and for them, my heart aches. That makes me all the more determined to never take Lukas for granted. To spend everyday thankful for him and thankful that he can smile at me while I write this. I'm so unbelievably grateful to everyone who touched his life and had a hand in saving it.  

Our little family - all complete (if only Lukas were actually looking- darn it) -courtesy of Banayote Photography

In an attempt to show my gratitude, I emailed our beloved Dr. Turrentine just to thank him for what he has done for our family and what he does for so many other families. I told him how much I admired him and how much his compassion and determination show in his work. I also told him how honored I was to have him be a part of our team. And you know what? He took the time out of his incredibly busy schedule to write me back. To tell me he appreciated my words and my note. To let me know he was so happy to hear how well Lukas is doing and to wish me and our family a happy holiday. I think that's such a wonderful thing. Someone of his caliber took the time out of his day to write little ole' me an email back. That's cool. Way cool. I don't know if he will ever see this, but I just wanted to say to Dr. Turrentine - thank you for being you. Thank you for everything you do in your work to help others. You are a kind, selfless man and its an honor and a privilege to know you.

6-months ago today the nature of Lukas' heart defect became very real for our family. Our boy has overcome a lot, but he's doing amazing and we owe it all to the amazing team at Riley Hospital for Children. 6-months ago today, Lukas got to start his new life. And for that, I am thankful. Today and always.

Happy Tuesday friends! Until next time...

Research.

Just a quick note. I realized I had never given out the name of the research study that we enrolled Lukas in before his discharge from Riley. 

The program that Lukas is enrolled in is a lifelong study through the Congenital Heart Surgeon's Society Data Center (CHSSDC), which is based out of The Hospital for Sick Children in Toronto, Ontario, Canada. 

Essentially, the way the program works is that once per year the CHSSDC will contact us either by phone, email, or mail to complete a survey/questionnaire to find out how Lukas is doing. Obviously, we will complete the survey/questionnaire until Lukas is old enough to do so himself. The medical reports and information gathered from each of these annual surveys are then analyzed along with other children whom present with the same heart condition from other centers in order to determine the impact of patient factors and different treatments on results. This analysis then examines overall health status and quality of life. 

You can opt out of the program any time and its completely optional. The mission of this study is so that congenital heart surgeons can compare and improve upon patient care to ensure our little ones are receiving the best treatment possible. 

I've been asked about the program a few times now and I realized I had completely forgotten to post it. I received a Christmas card from the program yesterday and it reminded me. So I wanted to take a moment and share it with you all in case you are interested.

You can find more information about the program, participating centers, read publications, studies and success stories from heart survivors, and even view facts and statistics on the CHSSDC website.

Touching.

Every once in a great while a story comes along and really warms your heart. This week has left me awe inspired. It has strengthened my belief in the power of this heart community and what an incredible group my Lukas belongs to. This week has shown me what a group of determined, compassionate folks can do for one of their own.

I was honored to be involved in the transport of a heart family from right here in my home state of Indiana to Boston. This sweet little fella, named Pierce, has Heterotaxy Syndrome. He needed to get to Children's Hospital Boston for life saving surgery, but had been denied such a transfer by Medicaid. This family was fighting for the life of their son. After I received an email from my dear friend, Kristine McCormick, I brainstormed with my incredible grandmother because she's my go-to advice guru. She always seems to have the right words and the right advice. She gave me the name of a charity air ambulance that I passed along to Pierce's mother. Grace on Wings, based out of Plainfield, Indiana chartered a flight for Pierce from Indianapolis to Boston. The only hiccup is that approximately $7500 was needed to pay for the fuel for the flight. With the help of social media and heart families from across the nation, Pierce received enough money to pay for the flight in around 90 minutes. 90 minutes. How amazing is that? Complete strangers from around our great community donated money to this family to help them ensure they could spend Christmas with their sweet boy. This community helped to ensure one sweet little life would not be lost to the CHD battle. In the face of a seemingly impossible situation, this community banded together to save a life. Friends, that's pretty awesome. Really awesome. There is more to their story and they've encountered many, many hiccups in their journey to Boston, but so many people have opened their hearts and the stars have aligned. And tonight? Tonight Pierce is in Boston and they're finally where they need to be. It's really amazing stuff. Follow along with Pierce's Facebook page or Twitter account to keep up to date with their journey.

I cried as I saw photos of Pierce boarding his plane bound for Boston. I cried as I heard the news their flight had landed and they had made their journey safely. Tonight I ask each of you, my friends, to keep praying for Pierce and his family.  Pray their journey is a little easier and that they can finally breath a sigh of relief. I know Pierce's mama, Jessamyn, would deeply appreciate it. 

All of these warm, fuzzy feelings got me thinking today. It got me thinking about where we were 6-months ago and the fear we felt not knowing what the next few days held for our son, let alone the next few months. We watched each day as he declined and we feared the worst. We feared losing our darling boy to this CHD battle. Six months later, we have our boy here with us. He's healthy, thriving, and doing far better than almost anyone anticipated he would. You know why? Because we had an amazing team that wasn't giving up on him. Because of Dr. Turrentine, Dr. Farrell, all of the cardiologists, nurses, neonatologists, respiratory therapists, social workers, and support staff that came into contact with Lukas, he's here today. We get to spend Christmas with him and we get to see his smile and hear his laugh every single day. They gave us the most amazing gift anyone can give. They gave our son a chance. He's here today because of their compassion and talent. Thanks guys. From the bottom of this grateful heart - thank you. I can't say it enough. I'm honored to have these amazing folks caring for my son. I'm honored to know them and honored to be able to shake their hand (or hug them).

I'm thankful for you all too. I get to share so much with you all and I'm so grateful that you listen to my rambling. You guys rock. Seriously.

Until next time...

P.S. - If you'd like to see more of Pierce's story, watch this clip from CNN featuring Elizabeth Cohen and Jessamyn, Pierce's mother.

Oh and its my mama's birthday tomorrow. Happy birthday mom!!

Good News All Around.

I know it's been awhile. I feel bad that I've been a little absent in the past month or so. I promise there is good reason. I've been busy in an extra good way. I'm working on two big projects, but more on those in just a second.

I wanted to update about Lukas' last cardiology appointment Friday. We saw our beloved cardiologist, Dr. Farrell, and she loved to see how much Lukas had grown and changed. You wouldn't believe how big he's gotten. He's 15lbs 2.5oz (the 45th percentile) now. Holy cow. He's got rolls galore. He's also in the 70th percentile for height, which is amazing! We started out in just the 8th percentile across the board, so he's really grown by leaps and bounds. Anyways, back to our appointment. Our little fella had an echo, which was interesting. He's rolling all over the place, so he gave the echo tech a run for her money. As a result, the echo itself took a bit longer than anticipated. The tech took her images and had Dr. Darragh (the pediatric cardiologist who gave Lukas his diagnosis back in January) and he said they had everything they needed. So we got our boy dressed up and we saw Dr. Farrell after she reviewed the echo.  

Lukas during his echo - chewing on his beloved Sophie the Giraffe (the best baby toy EVER)

You see, I was really anxious about this appointment. I didn't sleep well the night before. So when she handed down the news of what they had seen, I was relieved. Everything looks really, really good. His conduit is stenotic and leaky, but they said this is to be expected. Its not so severe that they need to intervene at this point. Dr. Farrell explained to us that Lukas is now twice the size he was when the conduit was placed. Since these conduits do not grow with them, they will begin to narrow and leak. We knew all along this would be the case. She said in most cases, its not really a problem unless it happens too rapidly or the narrowing/leakage is too severe that it affects its function. She said in these cases, they won't necessarily always replace them immediately. The goal is to get as long between operations as possible so that during each subsequent operation they can place the largest size conduit possible. The larger the conduit, the longer he has to go between operations (ideally). She said if they notice the narrowing becoming too severe, they will attempt to balloon it in the cath lab first to see if they can buy a little more time. Of course, they can't always avoid a subsequent operation in the time frame they'd like, but they do give it their all.

Dr. Farrell also told us there was a tiny "squirt" over Lukas' VSD patch, but it was such a scant amount that it poses no threat at all. She said his heart muscle looks wonderful as well. The contractions of his heart were good and strong, his heart rate was appropriate, and the EKG looked great. She went on to tell us that one of the most crucial components in truncus is the aortic valve, what used to be his common truncal valve. She said its so important for this valve to be functioning correctly and to look good because they really want to avoid valve replacements at all costs. As you may remember, Lukas only has a bicuspid aortic valve. Luckily, Lukas' valve looks amazing despite only having the two leaflets. She said there was absolutely no narrowing, hardening, leakage, regurgitation, or anything. The leaflets move perfectly and the valve itself looks perfect. This is wonderful news! 

All in all, it was a really wonderful appointment. Before Dr. Farrell left the room, she gave me a big hug. She received a letter from my grandfather after Lukas' operation saying how grateful our family was for her and how much we all appreciated everything she does in her career and for Lukas. She really appreciated it. She wished us a happy holiday. Everytime we see her, I am constantly reminded why we chose her as Lukas' cardiologist. I just love her.

Now, I told you I had been working on two big projects. One is well underway now and the other will be in full swing after the first of the year. The first big thing I'm so happy to share with you all is that I have launched the first ever chapter of Its My Heart here in Indiana. This is the first resource in the state really available for heart families like my own. When we found out about Lukas' diagnosis last January, I searched high and low for support groups, resources, anything. Sadly, I was disappointed to learn nothing like that existed here. Had it not been for the support I received from this blog and the friendship I have made, I'm not sure what I would have done. Its been such an honor to try to make a difference to heart families. I'm so excited to bring all of the invaluable resources Its My Heart has to bring to Indiana and I'm so excited that heart families in the state will no longer feel so alone. That's my goal anyway. You can find my chapter website here and if you'd like, come and "like" my chapter's Facebook page to keep up to date on what I'm doing and what the chapter is doing. This is something I am so very proud of and I am so thankful for the opportunity.

The second "big" thing is that I am opening a store called Ruffled Sewl. It will sell handmade goods, things for the littles, fellas, and ladies. Remember those soft-soled crib shoes I made for Lukas? That's just one of the many things that I will be stocking the store with. I have my own website that I've been working super hard on developing. All of that HTML code and formatting has been a journey, but I really love how its looking and can't wait to unveil it all to you. You can visit the website now, but the maintenance sign is out so you won't be able to actually see what everything looks like just yet. I'm getting everything stocked up, listed, and enjoying the holiday with my family before its grand opening at the beginning of 2012. We're going to start the year off with a bang! I'll be doing some giveaways and offering tons of discounts, so stay tuned! I'm so proud of it and I am donating a generous portion of every single sale to benefit those affected by CHD (both children and families). Its just my way of attempting to give back to a community that has given ours so, so much. 

So there you have it folks! I promise some better pictures of my little fellas this week. I'm photographing an event at Marian University this evening, so I will be editing away this evening. I've got some great ones to share with you all.