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. 

Prayer Request.

I promise an update and more photos for all of you soon. I know its been a little while and we have lots to share. Soon my friends, promise.

I come to you and ask you to direct your beautiful thoughts and prayers to a dear friend whose daughter also has truncus, like Lukas. Her name is Reese and her daughter's name is Noa. She has had a rough road thus far (she is younger than Lukas) and her and her mama really need all of your thoughts and prayers. These two are very near and dear to my heart and I would appreciate all of the positive energy you could spare to send their direction. 

I will go into specifics later if she tells me it is okay, but please, please pray for them friends. I know Reese would appreciate it more than words can say. As do I. =)

A Few Questions Answered.

A few times since Lukas' birth and even beforehand, we were sent questions from others about his diagnosis. Probably the most popular question I have been asked is whether Lukas has DiGeorge Syndrome. I realized that I have never answered this here so I thought I would now.

Lukas does not have DiGeorge. He had a genetic probe after his birth that was finalized just mere days before his operation (although we received the initial FISH results within a few days). Those results showed no q22 deletion (aka DiGeorge Syndrome). This is significant for a number of reasons. DiGeorge and truncus are often comorbid conditions, occurring in about 33.3% of children with a diagnosis of truncus. This is a significant enough finding that we were offered an amnio when we received his official diagnosis. Jonathan and I thought over it carefully and we decided against it. We knew he would be tested at birth anyway and the risk just was not worth it to us. The results of that amnio would not have changed anything in my care or his at the time, so we just thought it would be best to avoid the potential complications surrounding amnio (even though they are small).

The second question we have been asked most frequently is whether Lukas had a partial repair or a full repair. He had a complete repair done on June 20th. The operation which was performed on him is called the Rastelli. I have heard of some surgeons doing partial repairs or "temporary" repairs, but this was not the case for Lukas. Due to his decline before his operation, there was no time for a temporary repair. In fact, a temporary repair was never even discussed with us before or after his birth. The plan all along was to do a full repair once symptoms of heart failure became evident. This is how Dr. Turrentine does things, but every surgeon operates based on a different agenda and timeline. Some like to wait until the child is a particular age regardless of anything else, some surgeons like to perform them immediately after birth. It really just depends on the individual surgeon. The reason Lukas' operation was not performed immediately after birth is because they wanted to allow time for Lukas' heart rate, respirations, and vital signs to stabilize. They also wanted him to gain as much weight as possible before his operation.

These next few things are not so much questions we have received about Lukas or Lukas' care, but rather just general thoughts I believe are worth sharing.

One thing that we did do for Lukas before he was discharged was sign him up for a lifelong study. Basically what this program does is follow him for the remainder of his life unless we or he opts out of the program. His information is collected and stored in a "bank" that other congenital heart surgeons have access to. This study allows congenital heart surgeons to examine the operations performed by other surgeons in an attempt to develop safer, more successful procedures with a prolonged increase in the time between each subsequent operation. Its a great program. We all know that operations vary from surgeon to surgeon and state to state. Different medical professionals do things differently and that is totally fine. This program just allows surgeons from around the world to examine the procedures with the highest rates of success and helps them to educate others about safer, more effective means of operating on these little warriors.

Also, the Contegra graft that Lukas currently has does not have final FDA approval. This might sound scary, but every medical procedure that is FDA approved has to go through these steps. We had to sign several consent forms in order for the Contegra graft to be used and have Lukas' information be part of the study and shared with the FDA about its effectiveness. It has the initial FDA approval, just not final FDA approval. As a result, only select surgeons in the United States are allowed to use them. Dr. Turrentine and his colleague Dr. Brown just happen to be two of those surgeons selected to use them here in the state of Indiana. I watched a video of a truncus repair before Lukas was discharged that used an entirely different type of conduit and valve and even the repair itself was done completely different. If you are curious, always ask your surgeon how they perform the repairs and what type(s) of conduits/valves they use. Our medical team told us the two most commonly used valves are bovine (which is what Lukas has) and donor.

Lastly, we were told after Lukas' operation that his heart is slightly enlarged due to it being overworked in the two weeks before his operation. Dr. Turrentine told Jonathan and I that the walls of his heart were slightly thickened. He was not overly concerned with this finding, but Lukas will continue to be monitored to ensure it is not affecting the performance of his conduit and valve. Additionally, we were told prenatally not to be surprised if Lukas' oxygen saturations were in the high 70-low 80 range. As you know from having read on the blog, up until a few days before Lukas' operation his saturations were always in the high 90s, even though his "target" was only to stay above 75%. His doctors were both happy and concerned with his high numbers for this one reason: higher saturations meant his lungs were receiving more blood, thus working harder than they probably should be. This could have been a contributing factor as to why Lukas went into respiratory distress two days before his operation. 

I apologize that I have never directly addressed some of these questions or shared some of my thoughts on the additional topics mentioned. Sometimes that stuff just slips my mind.

Happy Thursday friends! 

P.S. - Please pray for one of Lukas' heart friends, sweet little Rebekah. She needs to have another heart surgery, probably sometime before Christmas. You can read about what the operation entails here.

Goodbye, Tonsils.

Please forgive me for not having updated since Hayden's surgery last week. Its been a bit hectic. 

before - waiting to be called back

 
In any event, our boy had his operation last Friday. Everything went very well (thank goodness), but he did have to stay overnight. They did have to use the laser to trim down some excessive voice box tissue and when Hayden was in recovery his breathing was quite "noisy." They paged Dr. Matt and called in a respiratory therapist. Because this procedure can sometimes cause burns and other airway complications, they decided to keep him just to be on the safe side.  

getting the party started - he wasn't too happy about all this

eh, nothing some little animals and stickers can't cure

He had some difficulty in the hours immediately following his operation, but after a dose of pain medication and a few good hours of sleep our boy started eating and drinking and he hasn't looked back since. Now you'd never even know anything had occurred. I'm not going to lie though. His voice is still raspy and I couldn't be happier. I love that little raspy voice. Dr. Matt actually said when he was scoping Hayden he noticed he had grown some "nodules" on his vocal cords. These aren't a cause for concern or anything like that. They just simply form from "overuse" (aka screaming and talking way too loud) and he will eventually grow into it. No biggie. Hayden now breathes out of his nose and the snoring has ceased, which is most excellent indeed. He's a trooper that boy. He was bummed about having to remain out of school this week, but he should be able to get back next week.

in recovery - not feeling so hot

after some sleep and pain medicine

 
Lukas also saw the pediatrician Tuesday for his 4-month check up. They couldn't believe how much he had grown and changed from his 2-month check up. And grow he did. Lukas weighed in at 12lbs 12oz, which is the 35th percentile for his age. This is a huge jump considering how at 2-months he was only in the 8th percentile (at 9lbs 50z). He's in the 50th percentile for height and 65th percentile for head circumference (that's a family thing - hehe). He's growing so wonderfully! This is a big, huge blessing. He's giggling like mad at everything and he's found his feet. He will grab them and carefully examine them in any and every way possible. 

golly we love this boy

All in all its been a pretty good week. Our little tonsil-less boy is at the zoo today with Grandma, which means I get my little Lukas and my big Riley all to myself. On that note, I think we might go and enjoy the sunshine and warm temperatures before they fade away.

Happy Friday friends. Hope you all have a beautiful and safe weekend! 

Rainy Days and Thursdays.

It was rainy yesterday. And cold. It made for a nice day of sitting inside and drinking hot chocolate with my boys. Riley was supposed to have soccer practice, but it was canceled due to standing water on the fields. The NYSL wanted to "preserve" the integrity of the fields, so they wouldn't permit players to come to the fields with their cleats on to practice. Today is a little nicer, thank goodness. At least its sunny and its supposed to be the warmest day for the remainder of the week. I tell you what, all of this rain could have come over the summer when the temperatures were sweltering and the grass was dying. But I digress.

hiding under the bed playing with Chloe (our cat)

We are t-minus 1 day from surgery now. We should receive a call from the OR sometime today letting us know what time to be there.  From what we understand the time slots go by age. Basically, the younger the child the earlier they get in. So hopefully Hayden won't have to wait too long in the morning since he won't be able to eat or drink after midnight. While we are at Riley, we are planning on making a quick trip up to the NICU to visit with some of our favorite nurses who are going to be working. I can't wait for them to see how much Lukas has grown in the three months since his operation (holy cow - can you believe that was really 3 months ago already?). Time sure does fly.

So my task for the day is to go and get Hayden some comfy pajamas to wear to and from the hospital. Not that he doesn't have a million pairs, but we wanted to get him something extra comfortable since he will come right home and lay down. We don't want him being uncomfortable for the ride home and we don't want to have to pester him when we get here to put "comfy" clothes on. Maybe some Spiderman or Star Wars pajamas - something that will maybe cheer him up afterwards cause I'm sure he won't be a happy camper. 

Happy Thursday friends!  

P.S. - Baby Scarlet is doing wonderful and they are hopeful that she will be extubated tomorrow! That's just wonderful! She will be able to be discharged in two weeks! Go Scarlet!! Aren't these sweet little heart warriors just amazing?

Tuesday Quicky

In the spirit of sharing I thought I'd do a quick Lukas spam post on this rainy, cold Tuesday. I've not been overly diligent about sharing pictures of the boy for whom this blog was created, so here's a few of my faves (via Instagram - I love that app). Enjoy.
Do you remember the shoes in the middle there? Those are just one pair of the teeny, tiny soft soled crib shoes I made for my boy before he came into the world. I'm planning on making more since the weather is cooling off and its the perfect time to sport little shoes rather than just socks. 

Happy Tuesday!

P.S. - Baby Scarlet made it through her heart transplant yesterday and she's doing just great! Thank you for all your prayers for her!

Lazy Days of Fall.

As Friday's surgery date draws closer, I find myself tiding up and preparing. We are stocking up on some supplies (aka lots of fluids we know Hayden loves to drink) and some necessities so that we don't have to venture out over the weekend. This weekend was not much different. We pretty much hunkered inside and steered clear of the rainy coolness of the fall weather here in Indy.

Staying indoors opened Pandora's box for my brain though, so I guess the weekend wasn't totally a bust. I painted my nails a gray shade since I have a newfound love for all things gray recently. The shade is called "Concrete Catwalk." Pretty catchy, huh?

Let's see, what else. Jonathan and I also talked about little "chores" the boys could do around the house. Just things we want them to get used to doing, like getting dressed, brushing their teeth, and picking up their toys. We also decided to give Riley and Hayden each an extra "special" job. Riley gets to feed the cats and Hayden gets to help us make the beds. To drum up their excitement over doing these things, I created a little chore chart for them. I wanted it to be kiddo friendly, so I created four simple tasks (with pictures) that they can check off each day when they've done their chore.

It was a big hit! The boys loved it and they ran around like mad trying to get their "chores" done so that they could check off their little circle for the evening. To make it easy I printed them on some cardstock and stuck them in 8.5"x11" frames that I happened to have laying around. That way the boys can make their check marks with a dry erase marker and we can wipe it off and start again fresh the next week. It's working out great so far. Now I just need to decide where to hang them. Any suggestions? I thought about maybe putting some magnetic strips on the back of the frames and hanging them on the refrigerator or using some of those 3M Command Strips to hang them on the wall in the laundry room. Decisions, decisions.

I'm also working on a little game for each of the boys. Something little to carry around in the car with us for when we need something to keep us preoccupied. I'll post pictures when I'm done. It's a memory game, but it also will help them remember their colors too. I'm also making them some printables that I am going to laminate to help them write their name. Basically it will be traceable, but with it being laminated we will be able to work on it over and over again without going through a million sheets of paper.

How about some Lukas news? Well, he's doing just great. He's getting so big and he's just so handsome. He has the widest, biggest smile and a giggle that could absolutely, positively melt your heart. He's such a little miracle and we love him so, so much. Riley has even finally started wanting to be near him. He will kiss him on the forehead and tickle his feet. And his baby voice that he talks to him in. Oh. My. Gosh. Swoon. I'll try to record it sometime so you all can hear it. It's precious. Just precious.

a little happy, smiley boy spam for you (please excuse the blurriness - he was moving and it was on my phone)

Well, happy Monday friends. Hope it's been a good one.

P.S. - For those of you wanting an update on baby Scarlet, her family received the call last evening. She is getting her new heart and a new chance at life. Scarlet is in surgery right now, so please pray for her and her family. Also, please take a moment to say a few kind words for the donor family who is going through grief today I cannot even imagine. Keep them both in your thoughts today friends.

Run Fun and Operation.

Everyone have a good weekend? I know I sure did. I mentioned a couple posts back that I was given the immense honor of photographing the 33rd Annual Dick Lugar Community Run, Walk, and Health Fair this past Saturday. It went beautiful. The weather was perfect and the event went off without a hitch. I was honored to meet the new President of Butler University, James Danko, and his wife, Bethanie, who were just incredibly kind people. She talked with me at great length about Lukas' journey and we talked about a new endeavor that I am getting underway. She was so incredible and offered her assistance in any way possible. That's huge. Beyond huge. They are both so lovely and we are so honored to have them at Butler (I'm a huge Butler fan because its my big brother's alma mater). 

The run itself is hosted every year on the Butler University campus. If you haven't been there, you are missing out. Its such a beautiful campus. Year after year my appreciation for that campus has never been lost. The Health Fair and award ceremony was housed in Butler's Health and Recreation Complex, which is a great facility for prompting health and wellness for Butler students and staff. It was just an incredible day and I was so lucky to have been able to share it with such incredible people. Anywho, here are a few shots from the day that I consider to be my favorites.

the first youngster to cross the finish line

love this photo

crossing the finish line

starting the races (new Butler University President James Danko is on the right)

So that's the good news. It was a blast and I can't wait for some more of the exciting things I have coming up! More on that later. Unfortunately, I also have a bit of bad news to share. That's where the second part of the title comes in. More surgery, different child (aka Hayden). When he went to his 2.5 year check up with our pediatrician, Dr. McAteer asked if I had any concerns. Not thinking anything of it I made a joke about how Hayden has a man snore. As in, its incredibly loud - like a grown man. With that in mind, she looked in his throat and shook her head in agreeance with what she knew she would find. His tonsils were enlarged. So enlarged in fact that she could not even see the back of his throat. She made an appointment with an ENT down at Riley and come Tuesday we got the word. Hayden needs to have his tonsils and adenoids removed, tubes placed, and some excessive tissue trimmed from his voice box. During Dr. Matt's (the ENT) assessment, he noted that Hayden's eardrums were not rebounding because he was retaining fluid behind them. He had a hearing test done and let's just say the results were less than stellar, but Dr. Matt is pretty confident that will improve once the fluid is drained and the tubes are placed. 

I won't lie, I'm not looking forward to it at all. He's such a happy-go-lucky boy all the time and the thought of him being in pain saddens me terribly. And likely his sweet, raspy man voice will be gone after the operation. I've always adored that raspy voice, but it turns out all along it was a symptom of all these other things. That's going to take some getting used to. This is all slated to take place next Friday, the 30th. I don't know the times yet, as the OR will call me the night before with the time and his instructions. I'll be sure to keep you all posted. Here's to hoping things go smoothly and this is the last procedure for our little gang for a while.

Happy weekend friends. Anyone doing anything fun?

From the Heart.

A few days ago I saw a message in a heart parents group I am a part of. A lovely woman is who is expecting her first heart baby within a few weeks reached out to ask for advice on the road ahead. It was a really thought provoking question. I've thought about this very thing many times, but its never something I have really sat down and genuinely collected my thoughts on. I thought back to when I first found out about Lukas' heart defect; the advice, guidance, and support I received from others. From my family, friends, doctors, and even complete strangers. I thought back on the moments that struck me the deepest and the actions that defined our path. I looked back on our stay in the hospital and things that I knew I should have done differently. I searched for words and phrases that really struck a cord with me.

What I came up with was this. The CHD journey is not something you can really sugar coat. Its raw, its deep, and it affects the very core of you. Its impossible to look a heart parent in the eye and tell them that this journey is going to be easy because truthfully, its not. Its not easy at all, but it is worth it. There are tough moments. There are times you become so numb you wonder if you can keep going. You wonder if you have the strength and perseverance to make it through this. Rest assured that you do. When tough moments surface, you somehow find that strength. You find that will deep in your bones that makes you want to fight until the very end. You draw strength from wanting your little one to get better, to come home, and to live a vibrant life that there is nothing you won't do to see that goal accomplished. 

Its hard watching your little one struggle. Its devastating to stand by and know you are helpless to do anything to stop it other than being there to comfort and soothe them in their time of need. As a parent, you never want your children to suffer. You never want them to be scared and you never want them to endure hard times. This was probably the most striking lesson for me as a new heart parent myself. As Lukas declined before his operation, I had to stand by knowing everything was out of my hands. I could cry and I could plead with his doctors and surgeons to help him get better. I could plead with God and I could be there to hold him, touch him, kiss him, and whisper in his ear, but beyond that I was powerless. Its one of the hardest, deepest cutting feelings in this world. In these situations you have to recognize your own limits. I tried to stay awake 24/7 to be by Lukas' bedside. I somehow thought that with me being there and wearing my own body down that I was making a difference. I wasn't. I cried hysterically the first time the NICU staff convinced me to leave and get some rest. I had nurses and doctors constantly telling me that I needed to take care of myself too if I wanted to be there and be strong for him. They were 100% right. At the time I felt like I was being picked on because I wanted to be there with my baby. Looking back now, I should have absorbed that advice sooner. It wasn't until I was near the breaking point of my body that I finally heeded their words of wisdom. While you always want to be there and you always want to remain vigil of your little one, you need to take care of yourself too. Lukas' condition wasn't going to be any better or worse whether I was there or not. I spent every moment I could with him, but I had to sleep too. If I wanted my mind to be sharp and clear, I needed to sleep. I needed to eat. And occasionally I needed to leave the confines of his hospital room, even if only for a few moments. It clears your head and opens your perspective. Sometimes that very element is needed on this journey.

If surgery is required, especially open heart surgery, rest assured that first time you see them its going to take your breath away. No matter how many pictures you see of other children or how prepared you think you are, nothing prepares you for that being your child. Our beloved pediatric cardiologist, Dr. Farrell, echoed that same sentiment before Lukas' arrival. It is good to feel prepared. Its good to know what to expect because it does lessen that blow to some extent. If you know they are going to be hooked up to lots of machines and have lots of IV lines, tubes, and monitors, that knife cuts just a little less deep. Nonetheless, it is still your child. Its heart wrenching to see your own flesh and blood laying there receiving a level of care most people will probably never know in a lifetime. And you hope they never do. As hard as those initial moments are, remember its a benchmark. Its a milestone and everyday things come off. IV bags, lines, monitors, and tubes disappear as a signal of improvement. Jonathan said something on the day of Lukas' operation that has always stuck with me. He looked me in the eye as we said "see you later" to Lukas in the OR and said "today we get to start watching him get better, not worse." I cannot tell you how true this statement is. Knowing they are on the road to recovery and knowing their lives have taken a positive turn makes it just a little easier to see them in those initial hours after an operation. I remember comparing Lukas' heart monitor before and after his operation. As he got better I remember his respirations being within a normal range. I remember his heart beat not being so erratic. I took comfort in these things. I took them as a sign of his improvement. As far as I was concerned, the day of his operation was the first day of his new life. He did things after his operation he had never done before. He smiled. He cooed. He stayed awake through a feeding. I cannot tell you how remarkable those very simple things felt. They meant he was getting better. Thinking of open heart surgery is a scary prospect. Like any medical procedure, things can go wrong. Your mind typically drifts that direction when you get news like this and almost immediately. You always think of the bad before you think of good. Its a pretty natural human reaction. My advice on that subject is this. Be cognizant of the bad. Be aware that things can go wrong, but don't dwell on it. Don't focus all of your energy on the bad. Instead, devote it to the good. Look at success rates, talk to other parents whose children have been through that operation. Find a surgeon who feels right. Ask questions. Ask anything that helps to ease your fears no matter how minute it feels. Whenever the bad creeps in, replace it with the good. Never let that negativity or fear linger. You just have to remember in this situation, it is what it is. Good, bad, or indifferent, you're here. Certain bridges have to be crossed in order for improvement to occur. Embrace these bridges. Embrace these steps and welcome them, for its the pathway to improvement. Its the starting line of a better life. An incredible life. Have faith and hold onto it. Never stop believing and never lose that faith.

Some of the most powerful memories I have of Lukas' journey are the photographs I took while in the hospital. Both before, during, and after Lukas' operation. Not a day went by that I didn't photograph some aspect of his life and I'm so glad I did. I treasure those photographs. So much so I couldn't even delete them from my compact flash card even after I had uploaded them to my computer and archived them. I actually "retired" that CF card. Its kept in a safe place and it will never be used again. It might sound strange to say that I hold so close to my heart photos when my son lay in a hospital, but I do. Its a part of our history. His history. I look back on those photos and they evoke such strong emotions. They are a reminder of where our boy was and how far he has come. Those photos are so powerful that they can tell Lukas' entire story without me having to say a single word. There will be days you don't think you will want to remember, but I promise you will. Photograph every second. Let those photos tell a story. A beautiful story. There are moments forever forged in those photos that I never thought I would want to remember, but I'm so glad I paused long enough to capture them. You will be too, I promise. You will look back on those photos with a fondness and appreciation I don't even have the words to explain.

I've said it a million times since Lukas' journey began and I will say it again. The road is hard. There are lots of bumps and lots of rough patches, but what lies on the other side is pretty miraculous. Those who don't know what Lukas has been through look at me with this profound disbelief when I tell his story. Unless you see his scar or witnessed some aspect of his struggle, you'd never guess his first months of life were not "typical." Bad things happen and you never really know what to fully expect because everyone's CHD journey is a little different. I don't think any two people ever really walk the exact same road with this stuff. But you live for those good days. You bask in knowing that right now, nothing needs to be changed. You learn to appreciate those days. You learn to live one day at a time and appreciate that day for everything it contains. You'll gain a new found sense of the world around you. You'll be forever changed, but in a good way. You will be stronger and you will leave with a little more than you came with. 

That's my advice for any parent finding out about a heart defect, illness or hardship you know your little ones will endure. They are words from the heart. 

Happy Hump Day friends =) 'Til next time...

The Big One.

I promised a few days ago for a big, picture filled posting about the happenings of the last month or so. That time has come, so here goes nothing.

First, my big boy started soccer. His coach's name is Patrick and I swear he has to be the most patient man on the planet. He is so good with the kids and even though he said that teaching a bunch of 4-year old's to play soccer was the equivalent of "herding cats," he's awesome. His son is on Riley's team and boy is he good. The first day of practice Riley was super tired. Its the first time he's ever really had a structured "activity" after his normal school hours, so those first few times were a little rough. He came home and fell asleep pretty much immediately after getting cleaned up and prepped for bed. His first game came and went and he did such a good job and his team won to boot. Go Green Lanterns (the kids came up with the name, can you tell?)!

the amazing coach Patrick and the Green Lanterns on the first day of practice

Hayden watching his big brother practice

My little man (Hayden) also started school and he loves it. A lot. He literally could not have cared less when I dropped him off the first time nor does he really care any other day for that matter. He runs in, hangs his backpack up, and he jumps right in with his classmates. When I pick him up, he's mighty happy to see me though. He gets a big smiley face sticker everyday because he's such a good boy.

my big school boy

Lukas also met with Dr. Farrell for his first cardiology appointment as an outpatient. It went exceptionally well. He had a repeat chest x-ray and all looked great on that end. She listened to him and made her assessment and said that he sounded so wonderful. We talked about his medications and where to go from here. We are to continue his Lasix until the script runs out, then we can discontinue it. She will keep him on the half tablet of 81mg aspirin though, just to keep his valve and conduit in good working condition. He will have another cardiology appointment in December for an echo just to examine everything working inside. Good news all around and those are the days we live for. Good is a word I have learned to love dearly. 

aren't baby eyelashes amazing?

More photos of Lukas are coming soon. We are working on his shots from his 3rd month birthday to share with you all! Lots more coming, so stay tuned.

I also shattered the screen on my phone, which was an epic fail on my part. It was sitting on the corner of the dining room table and the kids ran by acting crazy and knocked it off. As soon as I heard it hit the floor, I knew. It was shattered from corner to corner. It was not only shattered, but parts of the glass were separating. That meant tiny shards were coming out, which made for a not so pleasant event each time I answered my phone. Fortunately, we have insurance coverage on our phones so I got a new one with little fuss.

On the 27th, I had the immense pleasure of meeting the incredible Kristine McCormick, who is an incredible woman. In her, I found a friend and a confidant. She has worked so hard for the CHD community and in her goodness, beautiful things have happened. Because of her, Indiana will begin screening every baby using pulse oximetry as part of the normal newborn assessment. In her eyes you can see determination and good. I had the honor of photographing an important meeting of hers, where she talked about her work with Operation Healing Hearts and the strides she has made with pulse oximetry testing. She's truly amazing and if you haven't seen her blog, you need to. It will touch your heart in ways I can't even describe.

Kristine's Operation Healing Hearts materials - isn't that photo spellbinding?

The running and gunning continues this week. I have lots planned and a million things to get done. Never a dull moment around these parts. Want to know what I am most excited about? I was given the immense honor of being asked to photograph the Dick Lugar Community Run, Walk, and Health Fair at Butler University, which I am extremely excited about. Its going to be awesome and I can't wait. I've been going every year since I was probably in 6th or 7th grade, so to be granted the opportunity to capture it from my perspective is a pretty big honor.

because everyone needs a random eye picture of course

Happy Monday everyone. Hope your weekend was fun and going to work or school wasn't too much of a drag this morning. Until next time...

Remembering.

I will never forget where I sat and what I was doing 10 years ago today as our nation underwent terrorists attacks that claimed the lives of nearly 3,000 innocent citizens. I was in high school and sitting through a lengthy student resource time due to standardized testing going on throughout the school. It was not our day or our time for testing, so we sat in quiet study halls. I remember the moment our principle came over the intercom to announce a plane had crashed into the World Trade Center and asked for teachers not administering testing to turn on the classroom televisions to follow the news coverage. 

As our study hall teacher reached up and switched on the TV I remember not really feeling much. I was young and I don't think I quite grasped the magnitude that a plane crashing into a skyscraper meant that people were in that building dying as the nation watched. When I saw the image of the north tower smoldering with its gaping hole in the side, that reality grasped me a little harder. People were losing their lives right before our eyes. I remember the news coverage at first thinking this was a tragic accident. We watched the live coverage as the second plane came into view and watched as it slammed into the south tower. A large explosion ensued and at that moment the faces of everyone in the classroom reflected the horror of the event we had just witnessed as young high schoolers. We were watching a moment that would forever be forged in history books. I remember covering my mouth and gasping as the cause became evident. America was under attack.

A short time later the news coverage panned to the Pentagon, where a third hijacked airliner had crashed. More innocent lives lost and more destruction. No one in the room could move. We were each gripped with a fear we had never known. How could such a horrific thing happen here in America? We got word of the downed flight 93 in Shanksville and then the towers collapsed. I looked around the room and no one could move. Eyes were glued to the television as we watched these towers disappear from the New York skyline in a cloud of dust and debris. Our study hall teacher was wiping away heavy, wet tears with her Kleenex and sniffles could be heard all over the room. That was the only sound that could be heard and it was pretty much the only sound that was heard in our school for the remainder of the day. Those who emerged from testing were struck with the tough reality that a tragic event had unfolded, to which they were unaware. I will never forget the reactions of my classmates that day. I will never forget their facial expressions, their sobs, and their silence. That silence was deafening.

It was a numbing day. After study hall had ended I remember classes not really continuing as planned. Instead we watched news coverage and drank in everything about this day. I remember going home and not even really knowing what to say to my parents. I remember telling my mom where I was and how it felt watching the second plane crash into the towers. I remember wondering if it was over or whether more attacks would come. I'm not sure I slept a wink that evening. I laid in my bed and just stared at my ceiling. I thought about how terrified those on the hijacked airliners must have been knowing these were their last moments on Earth. I cannot fathom fear so great. I cannot fathom how harrowing those last moments were for those trapped in the towers. That evening I struggled knowing there were children who had parents that would not be coming home. Brothers, sisters, mothers, fathers, children, friends, and family were gone forever; their lives taken by those with no regard for human life. Even their own.

I watched a documentary lastnight that showed the news coverage as it happened. The feelings from that day all came rushing back. Now as an adult and as a parent, it means so much more. The magnitude is somehow greater. Someday I will share with my children what happened on the 11th of September 2001. I will talk to my children about the events of that day and its gravity just as my parents spoke with me about events such as the Challenger explosion. Our nation has rebounded from the tragedy, but its impact is still being felt the world over.

On this 10th anniversary of the worst terrorist attack on American soil, I remember those who lost their lives and the many families affected by this senseless tragedy. I remember. Please take a moment on this beautiful Sunday to remember those afflicted by the events of September 11, 2001 and their families. Remember the heroism and the selflessness of the first responders, the passengers on flight 93, and those who came together in the days following to protect our country and comfort our citizens. Remember.

Do you remember where you were when the news broke of the attacks?

Heavy Hearts.

Yikes, I haven't posted since August 15th. I realize most of you probably think I'm neglecting the blog, but I promise I'm not. It's been a busy past few weeks with lots of appointments, soccer practices, soccer games, and coming and going from schools (aka a whole lot of running and gunning). I'm working on a big, lengthy, picture filled post telling you all about the happenings in the past (almost) month. But tonight I come to you asking you for your help.

Your prayers worked miracles for our own little heart warrior. I have zero doubt that our boy pulled through because people the world over were thinking of him, sending him positive energy, and praying hard for him. Tonight I ask you to turn those prayers towards a fellow heart family. Alexis Griffith gave birth to a sweet little HLHS'er named Scarlet Marie on June 15th. She's been through a lot in her life thus far and is fighting harder than any little baby ever should. 

sweet little Scarlet fighting hard (borrowed from her mama's Facebook page)

I am going to share this message with you all from her mama because it explains why they need your prayers and thoughts better than I ever could.

"Tears in our eyes and desperation in our hearts, We need everyones help.. scarlets heart is failing faster then the Drs thought, she cant be taken off the vent and theyve said our best option is too send out a media plea for someone to donate a heart, if you have ANY way to get in touch with the media please let me know im typing up an email to send to all media stations, send me your email and ill forward it to you, please... Im begging on bended knees."

A Facebook page was created to help spread the word about Scarlet's dire condition and need for a heart transplant fast. Please "like" her page and share it with your friends on Facebook. If you would like to read more about this family, please visit their family's blog Waiting for Baby. 

I cannot tell you how much my heart is aching for them. We were so immensely blessed that our little miracle pulled through his struggle and that things happened as they did. No parent should have to go through this. No parent should watch their child struggle to stay alive before they have even had a chance to live life. 

So friends, with a heavy heart tonight I wish you all a happy almost Friday. Please keep this family in your thoughts and prayers. Spread the word if you can so others can keep sweet Scarlet in their prayers as well.

Blessed by Bovine.

I realize the title of this post may be a little strange, but I promise it will make sense in a few minutes. Just bear with me.

Today we celebrated my bright eyed 4-year old's first day of school. He talked all morning long about seeing Mrs. Denney and he kept grabbing random things and sticking them in his backpack to show her. First it was Mr. Potato Head, then it was Woody and Buzz, then it was his "pennies" (aka change he "borrowed" from my purse). I thought he was going to burst at the seams when I told him it was time to finally go. He grabbed his backpack, put it on and literally ran as fast as his little legs could carry him to the garage. Before he got in the car though the sappy mama in me had to take a few pictures because he was just too cute.

acting like he was taking a picture too - he's his mama's boy

waiting to go inside

He was so cute. When I finally got him out of the car he wanted to put his backpack on and he literally dragged all of us hand-in-hand to the doors. As the other kids and their parents starting crowding the doors too my little boy became awfully timid. He was holding onto my leg for dear life. I think the large, hectic crowd got him a little flustered. It was chaotic and noisy to say the least. 

We finally got him inside and found his hook for his belongings. He wanted a kiss and a hug and then he told me to leave, haha. Little stinker. Mrs. Denney was very excited to meet little Lukas. I showed her his incision and talked to her for a minute about the way things happened after his birth and before his and after his operation. She was so glad to hear that things were now okay. I got a little teary eyed recounting it all. It was such a powerful time in my life. It still only feels like yesterday, which made it all the more interesting when I came home and found this.

That's the appointment card from the day we got Lukas' diagnosis; the day that changed our lives forever. I sat for a minute and just gazed at it in my hand. I'll never forget the emotions of that day. I will never forget the moment Dr. Darragh looked me in the eye and told me Lukas had truncus. I grabbed that card and tucked it away in Lukas' memory box as I wiped away a few more tears. 

Now, I told you the title of the post would make sense. If you beared with me its about to make sense. You see, I got this envelope in the mail addressed to Lukas from a company called MedTronics. I opened it and inside was an identification card for Lukas' conduit. It has a model number, a serial number and everything. When I flipped it over this is what I saw: 



The conduit inside Lukas is called a Contegra graft. This Contegra graft just so happens to have a bovine valve in it (aka a cow valve). Does the title make sense? We were blessed with the bovine. Thank goodness for cows! They blessed us with the valve that saved my little boy. Cows are pretty much my heroes now. Just saying.

In any event, I hope you all had a beautiful weekend and hopefully going back to work (or school) wasn't too hard. Happy Monday friends!

P.S. - Please take a moment and pray for the families and individuals afflicted by this weekend's accident at the Indiana State Fair. 5 people lost their lives and dozens were injured when the staging at the Sugarland concert collapsed. Please pray for those who are hospitalized with injuries and pray for those families who lost their loved ones in this terrible, tragic accident.

Out with a Bang.

Summer is drawing to a close for our little family. Riley has his first day of school Monday. Its incredible to think back about all of the changes that have taken place in our family since the last time he walked through the doors of his school. His teacher, the amazing Mrs. Denney, knew what the summer was bringing. She knew about Lukas' heart condition and the fact that he would be having open heart surgery. In fact, his last day of school was a mere 8 days before Lukas' arrival. She knew I was scared, but hopeful. I can't wait to see her Monday and show her Riley's new little brother.

sleepy little brother

Its shaping up to be a busy month around these parts. Not only does Riley start school Monday, but he also has his first soccer practice Wednesday. He's pretty excited, as are we. I ordered his cleats last week and we received them on Monday, which meant that Riley had a permanent smile plastered across his face for the remainder of the day. His first game is on the 27th and I cannot wait!

Buzz Lightyear backpacks the boys picked out for themselves

soccer cleats for my little soccer star

Hayden also starts school on the 30th. Its going to be good for him and I love the school he's going to. He has a "practice" day on the 25th to meet his teacher and his classmates and get him acclimated with his classroom. 

While I'm a little sad that summer break is coming to a close, I know my big boys are going to love being in school. It will also give me some wonderful cuddle time with my little warrior. I'm definitely looking forward to it.

love how you can see Riley looking over him - and yes Riley is obsessed with his Christmas pajamas

Happy Friday friends. I hope you all have an incredible weekend and good luck to those starting school this coming week!