Wednesday, August 21, 2013


I realize I never updated after Lukas' heart cath. My apologies!

The cath itself went far better than we had expected. Lukas did not require the balloon angioplasty. Dr. Hoyer actually said that aside from the stenosis Lukas' conduit is in great shape. While no interventions were necessary, we did learn a few things during the procedure.

1. The veins they would typically use in a leg approach were occluded on both sides, most likely from the trauma of multiple sticks and lines during his time in the NICU and PICU before, during, and after his operation. This forced Dr. Hoyer to use a neck approach, which they will continue to do in future caths.

2. We also found out that Lukas has fairly good sized pulmonary artery branches. Dr. Hoyer mentioned that many times in truncus patients these PA branches can actually be quite small, so when the conduit is placed it is often far larger than the PA branches. During the cath, we found out that Lukas actually has the opposite problem—his conduit is actually too small for his PA branches, which measure 11mm and 16mm. This is good news in that a large conduit will be utilized during his replacement (hopefully not for another year or so).

3. Lukas was quite anemic. Dr. Hoyer explained to us that small blood samples are taken during four different measurements of the heart. In each of these samples Lukas' hemoglobin was only ranging between 6.7 and 6.9. These numbers should be over 10, and closer to 11. So, Lukas is now on a pretty high dose of iron supplementation and we have already seen significant improvements in his coloring, appetite, etc.

Sadly, Lukas did have a bit of a hard time coming out of the anesthesia. He thrashed about for a good 45–minutes before he settled down and fell asleep. Being such a sap, I cried and cried as I whispered in Lukas' ear—telling him it was okay, and that his mama was here now. I rocked him and cradled him close to my heart as he fell fast asleep in my arms. I can't tell you how blessed I felt in those moments with him.

I am just so thankful and happy that our sweet boy is safe and had such a good report. I was also immensely thankful to have such a great support group at the hospital with us. My brother, sister-in-law, nephew, sister, mom, and stepdad were all there helping to keep our mind off of the procedure. Interestingly enough, we sat in the very same waiting room where we waited as a family 2–years earlier during Lukas' first open heart operation. It brought back some very profound memories of my thoughts and feelings as I paced around on that same carpet, nervously waiting for the OR nurse to bring us updates.

We even got an opportunity to see and talk to Dr. Turrentine—Lukas' cardiothoracic surgeon. He couldn't believe how good Lukas looked and how much he had grown. He couldn't wait to read the report from Dr. Hoyer. Before we left, I just had to tell him thank you. I also told him that he did a damn fine job on Lukas. I'm so very thankful for that man. He will never know the depth of gratitude I hold in my heart for all that he did in saving our little boy. He's here with us today because of his love, compassion, time, and talents. Thanks, Dr. T.

I'm hopeful that we can hold off on another open heart operation for a year or so. During our last visit with Dr. Farrell, we were looking at possibly replacing his conduit this coming spring. I am hoping with such a good report from the cath that we are able to put this off a bit longer.

As always, thank you for continuing to think of our sweet little boy and our family. We are very fortunate to have such a strong, healthy little boy. I am always cognizant that things could be very different, and I am so beyond thankful for all that he has brought into my life.
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Monday, July 29, 2013

A Plea for Prayers.


Please forgive me for my absence. On Friday, my beloved cousin, Sean, was hit on his motorcycle on his way to work. He was LifeLined in critical condition with numerous devastating injuries, including a spinal cord injury affecting his C3-C7 vertebrae. He also has a broken nose, orbital bone, and ankle. He has a very long road to recovery ahead of him, and I would appreciate all of your thoughts and prayers.

Our family has begun a fundraiser to help him. While you may not know Sean, even a little would mean the world to me and their family. You can donate to Sean's medical fund here.

Also, please pray for Lukas as we get ready for his heart cath on Thursday!

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Monday, July 8, 2013

A Life Lesson from John Wooden.

A few weeks back, I read this article that left the reader with one outstanding snippet of advice—make each day your masterpiece. 

I decided to look it up, as I knew it had to be a quote from someone, somewhere. The quote came from John Wooden, one of the most revered coaches in all of sports history. "Make each day your masterpiece" was but a fraction of what the quote entailed and a cord was struck as I read it aloud. Here it is in it's entirety:

"Be true to yourself, help others, make each day your masterpiece, make friendship a fine art, drink deeply from good books - especially the Bible, build a shelter against a rainy day, give thanks for your blessings and pray for guidance every day" - John Wooden

In the past two years, I've learned that you have to take it a day at a time. I've learned to be true to myself—to stand up for what I believe in and never take no for an answer. I've learned to no longer allow my family and me to be anyone else's scapegoat or doormat. I've tried to help others by being there in their times of need, as they were in mine. I've certainly learned that good friendships are something to be treasured, and I have forgotten about the facade of the bad ones. 

I've learned that everyday should be filled with as much joy as possible, even when times get tough. I've drank from many good books, including the Bible. I hope I've built a shelter against a rainy day, and even when I get stuck in the downward spiral that can sometimes arouse from the stresses of everyday life and the fear of the unknown, I try to remember how blessed we are. I remember how blessed we are to have found out about Lukas' special heart months before his arrival—to have had that time to prepare. How blessed we are to have such an amazing team of doctors and supporters. Mostly, I thank God for the blessing that our miracle is still here with us. Seeing his joyful smile reassures me that things really do turn out okay sometimes. 

And Lord knows I've been doing a lot of praying lately. I pray every night before I close my eyes for guidance and the strength to do the right things, to make the best decisions, to always be the best mother, wife, daughter, sister, and friend that I can be, and to help me navigate the turbulent times.

As you may or may not know, on May 23 I lost my grandmother. I felt very fortunate to have been with her as she took her final breath. I feel fortunate to have been by her side to tell her I loved her and to say goodbye to this woman who had such a profound impact on my life. But it wasn't easy and I've struggled a lot since. My grandmother was diagnosed with Alzheimer's in March 2012. In July 2012, we nearly lost her to pulmonary edema, congestive heart failure, renal failure, and a slew of other health issues. She never truly recovered from this ordeal. In the last days of her life, she had stopped eating and had whittled away to almost nothing. She had lost all recollection of who each of her loved ones were. She was constantly scared and anxious. She cried a lot, and I don't think I had ever seen my grandmother cry. The one person she always remembered without fail was my grandfather—my beloved Pap. We lost him in 2004 to liver cancer. In the last weeks of her life, she cried out for him. She missed him, and she needed him. 

About two weeks before she passed, my mom told me about a dream she had. She said in her dream Pap was beautiful, healthy, and young, and my mom told him that Non (what I called my grandmother) really needed him now. My grandpa said he knew, and that he was coming to take care of her. She said in her dream, my grandfather reached over and placed his hand gently on my grandmother's leg, and suddenly my grandmother was young, healthy, and vibrant again. My mom said in that moment, she knew it wouldn't be long. 

In the days before my grandmother passed, our family held constant vigil over her. Her breathing had slowed to about 2-3 breaths per minute, and we knew at any moment she could be gone. That final night my aunt, cousin, mom, step-dad, and I all stayed in her tiny studio apartment within the retirement community where she lived. My mom, aunt, and I slept on the floor—each of us waking every 20-minutes or so probably to make sure she was still with us. Early in the morning on May 23, the nurse came in to give my grandmother her medication (morphine to keep her comfortable). As he stepped away, she took her last breath and she went home to be with my grandfather. I miss them everyday, as they were both a big part of my life. Their old house holds thousands of beautiful memories for me, and I've driven by it many times since. My brother and I spent more time there than we did our own home, I think. It all just seems so final. And in many ways it still feels very surreal that they are both gone. Amid the sadness, I'm thankful they are free of their pain and they are together again after nearly 9-years apart.

Not even a month later, Lukas had his 6-month cardiology check-up. While still reeling from the loss of my grandmother, I thought his appointment would bring me some joy. Afterall, we do love Dr. Farrell. After Lukas' echo was complete, Dr. Farrell sat with Lukas and me to discuss what she had seen upon review. In her beautifully eloquent way, she told me that Lukas' gradient was about 10 points higher than his previous check-up, and that his conduit had some pretty significant stenosis (with some areas being more stenotic than others). Finally, Dr. Farrell shared that it might be worth a shot to do a heart cath—with a possible balloon angioplasty—to open his conduit up a bit and relieve some of the pressure, and that she would consult with her associate—Dr. Hoyer—who specializes in cath procedures to get his thoughts before making a final determination. Then, I am sure my demeanor visibly changed as she told me that if they couldn't do the cath or if it didn't give the results they had hoped for, the gorgeous boy sitting in my lap would likely need his conduit replaced this coming spring. 

I left that office shaken while trying to collect my thoughts enough to summarize the appointment for those I knew would be calling. I got my boy in the car and cried for a minute before pulling myself together. Why him? Why now? I knew this conversation was coming, as it's the unfortunate side effect of his heart defect and—as Dr. Farrell said—we are in the maintenance stage now. But, I wasn't prepared to have the conversation so soon. Thankfully my mom was there to soothe my aching my heart. We had lunch together with our precious boy, and walked around talking about life and good things.

So, we've scheduled the cath with Dr. Hoyer. I'm scared and nervous, but hopeful maybe this can buy my sweet boy a little extra time before he needs another open heart surgery. I'm praying for guidance, and I'm thanking God for the blessings of modern medicine that allows us to know exactly what is happening with our boy and is equipping us with the tools to give him the best possible care. I'm feeling especially blessed that he's made it two years with no significant issues or additional interventions. We've not seen the inside of the hospital for any reason other than a regular check-up in over a year. 

I'm making every single day our masterpiece with as many smiles and as much laughter as our house can hold. I'm drinking deeply from books and the advice of other heart parents. I'm staying true to myself and leaning on the valuable pieces of fine art that are my good friends, family, and my wonderfully thoughtful, supportive husband and children.

We will get through this and our sweet, beautiful boy will be all the better for it.

And just so you don't leave totally depressed—our boy is 2! Can you even believe that? We celebrated his second birthday with the people who mean the most to us (including my loving grandparents in Virginia, who celebrated with us long distance). It was a beautiful celebration of his life and all that he's achieved. And on June 20, we celebrated his second heart birthday—the day he got a second chance. I said a big prayer and a thank you to the amazingly talented Dr. Turrentine, who never gave up on Lukas and fought tirelessly for him. 

So there you have it, friends. Life lately. Please pray for Lukas as he undergoes his heart cath, and please continue praying for the many heart families out there who are just beginning their journey and for those who are still walking this beautiful, sometimes tumultuous path. 

John Wooden, thanks for the quote—and the life lesson. 
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Monday, February 18, 2013

The Weight.

Our family had a beautiful weekend. While it was bitterly cold outside, the sunshine almost made up for it. Saturday we decided to have a lazy day. We huddled indoors, opting to turn on the fireplace and watch movies instead of enduring the deceptive chill of the great outdoors. Sunday we went out to lunch with my family, as my wonderful grandparents were in town from Washington, DC. Beforehand, we got a little surprise. While getting Hayden out of the shower, I went to dry his hair off and noticed his ear was covered in gunk. I grabbed a Q-Tip and just rubbed it gently around his ear to remove some of it. Then his stream of—get ready for TMI—pus came streaming out of his ear. My heart dropped and I knew Hayden’s ear was infected and I was sure his ear drum had ruptured. He never complains when he’s sick—ever. When he was in the hospital with a resistant bacterial infection in his bloodstream 3-years ago, he never complained once. He could be sick as a dog and he'd never act any different than his normal self. He never complained about his ear bothering him, so my heart just broke because I know how bothersome ear infections can be. Of course our pediatrician’s office was closed and all the Med-Checks in the vicinity had a 1-2+ hour wait. So, we took him to the ER. He’s got some antibiotic ear drops (the strongest kind they make), and he’s on his way to being healthy again. Poor boy. We made it to lunch afterwards and Hayden came home and rested while my grandmother and I went out shopping for the boys. It ended up being a lovely day—all things considered. It's always nice spending time with my family and having the opportunity to catch up and share some laughter.

I have to admit—I’ve had a few things on my mind over this weekend. Last week, a heart mama posted in one of the heart groups I belong to about how her little babe doesn’t know about their heart defect, how they don't want them to feel "different," and that sometimes it is easier to "ignore" the fact your little one has a CHD. Those words resonated deeply within me. You see, I could have written that post word for word myself. While I know Lukas is still far too young to be aware of his heart defect, I’ve thought many times what that conversation between us will entail. How will I explain to him what this means? How will I explain to him that his brothers don’t have to suffer through this, but he does? How will I explain open heart surgeries? A lifetime of cardiac care? Restrictions? I’ve thought about each and every one of these things. Truthfully, I never want Lukas to feel different. I always want him to be treated as an equal. I want him to have the same opportunities as his brothers and peers. I want him to make his own unique mark on the world and never let his heart condition define who he is or what he’s worth. He’s more than a heart defect. He’s more than a scar. He’s more than open heart surgeries and cardiac check-ups. He’s more than that—so much more.

And as a parent to a child with a congenital heart defect, it’s tough. I’ve never sugarcoated my feelings on what that’s like. No parent wants to watch their child struggle or endure hard times. We’ve embraced the promise and perils that come with this journey. That doesn’t mean I wouldn’t trade places with him given the opportunity, but sadly we don’t get “do-overs” in life. There are days—however—that I actively try not to think about my little boy having a CHD. There are days it is so blindly painful it takes my breath away. I would never wish these things for my son. I would never wish fearing what tomorrow might bring. I would never wish the anxiety and uncertainty that comes when you don’t know how long it will be before your child has to go under the knife again. There are days I have to put it out of my mind because it’s unbelievably hard to cope with. It’s hard for me to even put that into words—but I know my comrades in the heart community understand. While I wish with all of my heart my baby didn’t have to go through these things—Lukas’ smile reminds me that it’s all okay in the end. I know he will do big things someday. I know he will make an indelible mark on this world despite all that he’s been through. Mostly though, I know our world is better and richer because Lukas is in it. 

Happy Monday, friends. I hope you all had a beautiful weekend!
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Thursday, February 14, 2013

Day of Hearts.

Happy Valentine’s Day, friends! I know I’ve been slacking a little bit in my writing duties. While I don’t want to make excuses, it’s been a busy, hectic couple of weeks at work—although I love busy and hectic. Nonetheless, the busy and hectic nature of my schedule has meant a lag in my updates, photograph taking/editing, etc. With that said, please forgive my use of Instagram as the method by which I've supplied today's photos.

Here we are—Valentine’s Day. Seems like a fitting day to write considering this slice of the blogosphere started because of a sweet, special heart. Am I right?

My feelings toward this day have evolved a bit over the years. As a kid, I always felt Valentine’s Day was silly. It was too “gushy” for me. Then I loved it because of my grandfather. Each year without fail, he got every single one of his children and grandchildren a box of chocolate. I always looked forward to this gesture every February 14th. I couldn’t wait to see his sweet smile and hear the sound of his voice as he said “this is for you, sugar doll.” The first year without that little box of chocolate was tough. It drudged up so many feelings on just how much I missed him. Valentine's Day somehow didn’t feel the same without my Pap. From that point forward, I was just content pretending Valentine’s Day didn’t exist because it made me despondent.

Once I had children of my own, my feelings towards this day changed again. I started giving our boys that little box of chocolate—along with the greeting “this is for you, sugar doll.” I came to the realization that, although my boys never got to meet my Pap, a little piece of his heart gets to continue living on in the way I parent my children. I get to carry on that beloved tradition with them and that feeling of happiness and excitement about Valentine’s Day returns each year. My love for this holiday grew even stronger when I learned that V-Day was the conclusion of CHD Awareness Week—and fittingly so.

So on this day of love, I got beautiful flowers from my husband that gave my office an extra special hint of brightness and beauty. 

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And his message on those flowers absolutely melted my heart. 

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I went to Riley’s school to celebrate with him. His class had this darling little Valentine’s party and it’s been the topic of virtually every conversation since Tuesday (Riley was out on Monday with strep throat). He was very adamant lastnight that he had to wear red today for said party. Lastnight, amid kindergarten homework, Riley and I worked on his Valentine’s for his classmates. My creative juices were not flowing and my Monster energy drink had totally worn off. So we stuck with FunDip (mama’s favorite) favors. Problem was the hearts where each name was to be written were so tiny there was positively no way Riley’s oversized 5-year old handwriting was going to fit in them. Plus, they were really hard to write on—even for an adult. So I took over Valentine-writing duties while Riley completed his homework. Don't you worry, he kept a watchful eye on his friend’s favors the entire time.

The party was darling and I really enjoyed getting to set a little time aside to watch him take in all the classroom festivities. He ate it up, let me tell you.

Hayden, poor dear, is sick. So he missed his Valentine’s party yesterday. He didn’t seem terribly torn up about it, but he doesn’t really care about much of anything except making sure his “black doggy” is close at hand. His connection to that thing is uncanny. It’s the only stuffed animal we have ever owned that he has ever been remotely attached to. He won’t go to bed without it—and sometimes he won’t even get in the car without it. I’ve caught him nestled warmly under his blankets at night when he’s fast asleep cuddling that doggy under one arm close to his heart. It’s precious.

That's him at my sweet nephew's 1st birthday party. The Mario hat was a big hit. 

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And Lukas—well, boy’s always happy. I swear nothing fazes him. Nothing stops him from smiling—unless of course you try to take his food away from him. While still a tiny little guy, he’s growing by leaps and bounds. Every day he hears the chime of our alarm when I open the door leading in from the garage and he runs to the laundry room anxiously awaiting me to open that door. And every time I walk through it, he has his arms outstretched, opening and closing his little fists, just waiting for me to pick him up. It’s become my favorite part of our evening routine. 

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I hope all of you, my friends, have a lovely Valentine’s Day with your loved ones. Happy heart day! Better photos/updates next time—promise!
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Friday, January 25, 2013

Right Now.

Has it really been 8-months since I last wrote? Yikes. I realize I've neglected this little space I created during a time when I yearned for my thoughts to live somewhere other than inside my head. Please believe me when I say I still yearn to perch in front of my computer and spill my innermost thoughts and feelings with you all. Life has just gotten in the way more than I ever should have allowed it. And with that said, I now present you an update on the last 8-months of our lives.

For the sake of being 100% real, honest, and open, 2012 was a year filled with amazing highs and crazy lows. There were many beautiful moments, but many difficult ones too. 

Lukas turned one, which was terribly bittersweet for this overly sentimental mama. On that very special day, we celebrated a year of struggle and triumph. A year of bravery and strength. But mostly, we rejoiced that this very special little boy who completed our family was happy, healthy, and present. Jonathan and I decided on a small, intimate celebration with our family, as we simply wanted to take in what a miraculous journey our son had been on with those who had never left his side. Small as it was, the day was really a beautiful occasion and more than a few joyful tears were shed for what beauty and amazement is yet to come.

Lukas' birthday festivities served as our "high" following a harrowing low. Without going into great detail, the month of May was life altering for our family — and not just our little family of 5. My entire family was rocked and the aftermath left each of us needing to pick up the pieces and make alternate plans for how we would move forward. My grandfather wrapped up an incredible 36-year career, and because my husband worked for him, that meant he wrapped up career his career there too. Thankfully, everything on that end worked out as perfectly as it could have, given the circumstances. I have since started down a new career path at Butler University, where my family has a long, rich history. I could not be happier there doing what I am. Likewise, my grandfather has moved onto many great things that utilize his immense brilliance, talent, and experience. For this, I am very grateful.

Towards the end of 2012, we were hit with another situation that proved heart breaking, at best. My oldest son was diagnosed with ADHD. This isn't a fact I've made overly public, even to family, because its been tough. Jonathan and I, along with Riley's amazing care team, are currently working on a concrete plan for him. But that journey is far from over. We've been relentless in our quest for answers and the best possible care and plan for Riley's needs. In a strange twist of fate, we also learned Riley had an encephalocele containing brain tissue and cerebrospinal fluid. He underwent an MRI for a completely unrelated issue and much to our surprise, the encephalocele was found. We have seen a neurosurgeon regarding the issue, who felt no management was needed at this time. But because I'm relentless and feel more than one voice is never a bad thing, we are currently awaiting a second opinion on the appropriate course of management, if any, that needs to be taken.

From that low, we celebrated a fun "high." I graduated in December with a master's degree from Ball State University — my dad's alma mater. All the pomp and circumstance of the ceremony and the delicious celebratory dinner with my family brought me a great sense of satisfaction...and a huge sense of relief that I no longer had to turn in homework or spend hours on end cursing my perfectionist self as I wrote and re-wrote papers.

Through it all, I think the past 8-months have taught me a great deal more about living in the here and now and really savoring each present moment. Sometimes that means making last minute changes to what you thought was a pretty grand master plan. Sometimes it means just letting what will happen tomorrow, happen. And sometimes it means just learning to let go a bit more. Each day presents new challenges and moments that will either make you curse or smile. I'm slowly learning to be okay with that. Tomorrow is tomorrow and today is today and I'm learning to worry about what bridge to cross when I get to it. I'm a big believer that things generally work out as they are meant to. I'm not so sure I believe its because of grand design per say, but I think its because we've been bestowed with the wonderful gift of freewill, and that freewill allows us to shape our own destiny. Things will always pop up that are beyond our control, this is simply a fact of life. Difficult moments arise, but its up to you to determine what you make of that moment and how you move forward.

While I've had a few more of those moments than I care to admit in the past 8-months or so, I'm happy to say that I've stood tall through the tests and my resolve as never been stronger. I've found the silver lining in the down-and-out moments and have taken them as opportunities to grow. 

So my friends, I apologize for my absence and my neglect. I promise to be more present and continue sharing with you the very thoughts that brought this blog into existence. I promise to share more photos, and not just crappy iPhone ones — real ones where I've taken the time to perfect the exposure, focal length, and shutter speed. Ones that keep it real and share what our life is all about, good, bad, or indifferent. 

Until next time.
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