Category Archives: awareness

The 2015 Heart Walk

Is it just me or did September barely seem like it existed?  Goodness, it just flew by.  Anyways, September was here, and with it came the annual American Heart Association Heart Walk in Charlotte.  It’s hard to believe this year would be my 4th year doing the Heart Walk and our 3rd together as a complete family.  How quickly time goes by, right?

In the past we tried to put together an “official” Heart Walk team and a bunch of people signed up but for various reasons, only one of them actually came that morning.  Last year we just did it as a family and it was really great.  This year we wanted to do something a little different and invite our close friends to join us: these are folks that really stuck with us from the beginning of our journey with Nolan and even friends we met during the journey.  Some we knew already from church when we found out we were having twins, and some of them we met for the first time when they came to our house to drop off food while Nolan was home from the hospital, others were our friends for even longer than that.  Either way, these people have played such an important and supportive role in our lives, we wanted to do this year’s walk together with them.  I texted everyone and we had a plan together.

The weather the morning of the Heart Walk was a little cooler than usual, though it quickly warmed up.  The start area was also in a new location in Uptown Charlotte, so that took a little getting used to…it was super crowded.  We met up with everyone, some of who were rockin’ their Team Nolan shirts, and off we went!

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Once we managed to get past the start line, the crowd thinned up a bit…we had like 18 people walking on our team so we kept a nice pace and it was great to spend it with my family and chatting everyone up too.  Early on, though, there was quite a bit of excitement…because I saw Hugo!

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Hugo is the mascot of the Charlotte Hornets and he’s one of my favorite mascots ever.  Even though I grew up in Connecticut, the Charlotte Hornets were crazy popular back home when they entered the NBA, and I thought Hugo was the absolute coolest.  I loved watching him in those mascot dunk contests (as Super Hugo) and I also knew the code to play as Hugo in the old school game NBA Jam (yeah, you remember that, right?).  So yeah…I was totally geeked to meet Hugo, and I held everyone up so I could take a picture with him and Hudson.

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My buddy Robert carried this torch with Nolan’s name on it.  He said he was preparing for the Olympics…good form, my man!

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About halfway through the walk, I carried Nolan on my shoulders, and I just love this picture because it makes me so happy he can join us on this walk and even if I had to drag myself, I would walk in his honor.  Almost all of the people on our team wore these signs with his name and people kept coming up saying hi to Nolan and saying they were just dying to meet him because of all the signs.  Of course, Nolan ate it all up.

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Possibly one of my fav pics ever.

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We managed to finally get to the finish line, as the day started to really heat up.  This is always such a great part for me because we do it as a family.  It’s so moving.

And last, but not least, here’s Team Nolan representing:

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I love these people.  They’ve done so much for us and we’ll never ever be able to repay them, no matter how hard we try.  I was honored they joined us on this day.  I remember 3 years ago when I did the first Heart Walk all by myself, 3 days after we found out that Nolan would be born with HLHS.  I remember that it was so emotional and at points I was just pushing along to finish.  Fast forward a few years and we’re 18 strong.  This year was so amazing!

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Nom Nom Nom!

Hey guys!  Guess what…it’s time for another episode of Heart to Heart with Anna guest-hosted by yours truly!  This is the third, and final, episode where I’ve had the opportunity to serve as a guest host.  It’s truly been a great experience and I want to thank Anna Jaworski for asking me to step in while she was on vacation.

This episode is titled “Ruling the World…One Cookie At a Time” and it features Jessie Wimmer, a local heart mom from here in Charlotte, and the owner of The Cookie Cult.

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I gotta tell you, he cookies are AMAZING, I even talked about them back in February.  In this episode we talk about her experience with her daughter (the story will make you jump out of your seat, I promise) and then about how she began her growing business.  Definitely an inspiring interview!

Check it out here: Ruling the World…One Cookie At a Time

So now that you’re sufficiently hungry, get on the interwebz and order yourself some cookies!  Go to thecookiecult.com and order at least 2 dozen.  Because you’ll eat the first dozen yourself and regret not getting a second…so just do it already.  Do it.  NOW!

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I hope you guys enjoyed my run as guest-host on Heart to Heart with Anna.  I would really love to hear some feedback on what you guys thought about the three episodes.  Keep being awesome, everyone!

Let’s Talk About Compassion Fatigue

Hey friends!  I hope you all enjoyed my first crack at guest-hosting Heart to Heart with Anna last week!  This week I take another shot at it.  This episode features my buddy Daniel Miles, who is Assistant Director of Spiritual Education at Carolinas Medical Center.  We spend some time chatting about Compassion Fatigue, which is a topic that I think ALL heart parents out there need to know about.  I’m serious.  The first time I listen to Daniel give a presentation about Compassion Fatigue I was like, “Oh my God, this is SO about me.”  The reality is we spend a lot of time and energy pouring ourselves into others and it leaves us spent…I’m sure you know the feeling.  We have to remember to fill our buckets too!

Anyhoo, please visit this link to listen to the latest episode of Heart to Heart with Anna: Compassion Fatigue: Silent Enemy, Soul Sickness

I hope you find this information as helpful as I have. Please, please, please share that episode with others!

So what’s next?  Well, I have one more episode left to guest-host.  What’s it going to be about?  I’m not telling.  You’ll have to wait and see!  Heart to Heart with Anna airs on Tuesdays at noon eastern time on BlogTalkRadio, and as always I will share the link here so you can listen at any time.  In my non-radio-hosting world, there’s a lot of other fun stuff going on that I’m excited to share with you, I’m just waiting for the correct time to do so.  As always, thanks to everyone for reading and for listening to these radio episodes!

The HLHS Dad is BACK on the radio!

Hi everyone!  Some time last year I had the opportunity to be a guest on an online radio show called Heart to Heart with Anna: you can read all about it here.  This is a really fantastic show that airs weekly and is aimed at the congenital heart defect community.

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Anna Jaworski is a heart mom who works diligently to put together this show every week.  Recently she reached out to me to ask if I would guest host the show for 3 weeks while she takes a much-deserved vacation.  I was definitely honored that she would consider me and I was excited to try my hand at something new.

For the first episode, I decided to share “This is NOT the Trip I Planned For!”, which is something I also posted about recently on the blog.  Since I’ve received so much positive feedback about it, I wanted to share it via the airwaves as well.  So without further ado, please check out this episode of Heart to Heart with Anna, featuring yours truly:

Heart to Heart with Anna: This is NOT the Trip I Planned For!

Please be sure to share this with your friends and I really encourage you to take the time and explore Anna’s website, especially all the other episodes of her show: http://hearttoheartwithanna.com/

BUT WAIT…THERE’S MORE!  Anna also has a series of books that would be a fantastic resource for my readers, and I would love it if some of you guys could support her work by buying a book or 5: Baby Hearts Press books

Stay tuned over the next couple weeks for more episodes of Heart to Heart with Anna, featuring the HLHS Dad!

 

A Potentially Life-Saving Reminder

Hey friends!  Today I want to keep tings really practical for everyone, whether your a Heart Dad, Heart Mom, Sibling, Friend, etc.

Way back when Nolan was prepping for discharge from the hospital after his Norwood procedure, there were a few requirements we had to meet before he could be sent home.  This included things like putting him in his car seat for 30-40 minutes while attached to the pulse ox reader (to simulate his drive home), giving medications through his tube, etc.  One other requirement was for my wife and I to complete an infant CPR training DVD.  It came in a box with its own CPR dummy and we had to watch the DVD, practice, and display our knowledge to his nurse.  This was important stuff to know because it could save his life in an emergency.  We went home and – thank God – never had to use the things we learned from the DVD.  And – admittedly – over time I really forgot a lot of the things we learned about CPR.  So with that in mind, I wanted to use today’s post to serve as a reminder that you really should know what to do should an emergency arises.  It could be the difference between life and death and I’m not being over dramatic.

CPR for Infants

CPR for Children

CPR & AED Use for Adults

Of course, YouTube videos can never take the place of a class where you can be certified and I really encourage you to look into that as well.  Check out this link for classes through the American Heart Association: http://www.heart.org/HEARTORG/CPRAndECC/FindaCourse/Find-a-Course_UCM_303220_SubHomePage.jsp

This is a skill that is very important to have…let’s just hope we never have to use it!

Swell Hearts

It’s hard to believe it’s already been two weeks since the Congenital Heart Legislative Conference.  There’s still so much to write about and you’ll continue to see some posts related to the conference.  Today I’d like to highlight a really important topic for not just heart families, but lots of other people as well.  Today I’d like to introduce you to an extraordinary person that I met during the Legislative Conference.  After checking in for the Conference, I decided to walk up to a random table and introduce myself.  The first person I met was a 19 year old named Jacob Kilby who was from California.  As we chatted, I learned that Jacob – like my Nolan – was born with HLHS.  At a very young age, however, Jacob needed, and received, a heart transplant.

Now, at 19 years old, Jacob needs another heart transplant to save his life.  And this isn’t Amazon.com: you can’t just put in an order for a new heart and just wait for it to arrive.  There is a list you’re placed on and then you have to wait for the right heart.  So Jacob waits.  That’s heavy stuff.  What’s awesome, though, is that you wouldn’t know if you got to know him a little bit.  He’s got a ton of energy, is a surfer, and has a great sense of humor and adventure.  I was really fortunate to spend the two days of the Conference getting to know Jacob a little bit, along with his Aunt Charity, who supports him on his journey.

The really cool thing is that he recently started his own foundation to promote organ donation called Swell Hearts.  As I mentioned before, there are no organs on-demand: they have to come from somewhere, specifically from donors.  So Jacob is taking the initiative by using his life experience to encourage people to become organ donors.  I really have to hand it him: he’s really striving to make a difference, in spite of waiting for a new heart.  He could easily sit around and wallow, but he works hard to make the world a better place…and I really believe he’s going to achieve some great things!  Check out his video:

According to the Mayo Clinic, there are over 100,000 people in the US awaiting an organ donation.  That’s an insanely high number, and sadly many do not get the call that they will be receiving an organ and that’s a real tragedy.  I’m an organ donor.  Are you?  If so, great job!  If not, why not?  There’s a lot of myths surrounding organ donation.  Some people think doctors won’t work as hard on you if you’re in an emergency once they find out you’re a donor.  This is completely untrue: doctors will do everything they can to save your life, just ask any physician.  Some people worry they can’t have an open-casket funeral if they donate organs, but this also isn’t the case as there will be no visible signs of donation.  You can read more myths about organ donation here: http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/organ-donation/art-20047529  And no, if you choose to be a donor, no one is gonna grab you in your sleep and remove an organ.  C’mon son.

For heart parents, this subject matter is difficult but crucial for us heart families.  The reality is that some HLHS kids – like Jacob – will need a heart transplant even if the three surgeries are successful.  Obviously I hope Nolan doesn’t need to go through this, but IF he does….then I hope someone chose to be a donor so that there is a higher chance of a heart being available.  There are way too many kids – and adults – dying because they’re awaiting hearts and other organs.  I implore you to please become an organ donor.  PLEASE.  Check out Jacob’s website http://www.swellhearts.org/ and read his story and then consider being a donor.  You can save lives long after you leave this earth.  Somewhere right now I bet there is a boy about Nolan’s age who is struggling to cling to life and his parents are hoping and praying for a heart to become available.  What if that was your child?  If it was your child, I bet you would want everyone you know to be a donor.  So encourage your friends to be donors, then encourage them to encourage their friends to be donors.  Let’s make this thing grow…for Jacob, and for all the 100,000 others like him who are awaiting life-saving help.

It was really a pleasure getting to know Jacob during this trip.  We had a few adventures like a late-night cold walk to the White House and taking the Metro to the airport in rush hour.  I’m glad I got to meet him…he’s doing extraordinary things and I wish the very best for the Swell Hearts Foundation and above all, I hope and pray that he gets the phone call about his new heart very soon.  There’s so much left to fight for!

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The HLHS Dad Goes to Washington (Part 2)

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

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After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

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Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

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Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

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I must note that Congresswoman Adams was wearing a really cool hat…and apparently she’s well known for her hats.  She even had a book on her coffee table that was all about women in church hats.  So awesome.

Congressman Robert Pittenger

Up next we traveled through the Cannon Office Building (which had a cool dome) to Congressman Robert Pittenger’s Office:

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Mr. Pittenger represents the 9th District of NC and if I lived just 2 miles down the road, he would be my Congressman.  I have a funny – and totally random – memory involved with Mr. Pittenger.  When he was running for office, he was in one of my town’s parades (maybe 4th of July?).  Hudson and I were there and happened to both be wearing Yankees shirts.  As Mr. Pittenger’s car drove by, he turned to us, pointed, and said “Go Yankees!”  He knows the way to my heart.  Anyways, we weren’t there to talk baseball, we were there to talk bidness.

We got there a little early but asked if they could see us.  Mr. Pittenger wasn’t available, so we met with Michelle, his Senior Legislative Assistant.  Much like we did with Ms. Adams, we shared our stories and our asks.  This meeting, however, was much more business-like and direct.  I’m not saying Michelle wasn’t nice, she was very nice, but I could tell it was a busy office and they had a lot going on so it was much more of a time crunch.  We learned Michelle is a Charlotte native and the office was decked out with Carolina Panthers stuff.  I noted to her that Greg Olsen from the team is also a CHD Dad.  Gotta spread that word (go get ’em, Greg).  I think it was still a successful meeting with a different feel from the first one.

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So far two meetings down but no one’s been like “Well shoot, sign me up!”  Not that it’s a bad thing…better to think things through.

We had some time to kill before the next meeting so we made our way closer to the Senators’ offices and hung out in the cafeteria (no pics allowed in the cafeteria, apparently!).  Outside the building we met a guard whose name tag simply said “Big Dooky”…part of me was REALLY curious how he got that name…the other part of me didn’t wanna know.  On the way to the cafeteria we passed a gift shop, complete with a call of political power ties (hilarious), a sign for a hair salon, a buffet, and…mmm..a coffee shop.  But alas, I did not stop for coffee.  It was a good chance to stop for a breather and a drink of water.  We’d been on the go since very early that morning so a chill out break was in order.  After awhile we set out for our next visit.

Senator Thom Tillis

Senator Tillis is our newly-elected Senator so his staff was in a small, temporary office.  Upon entering I noticed two things: one of his staffers had a GINORMOUS Apple monitor (this thing was insane) and there was also a small conference room that had a big taxidermied possum hanging from a branch on the wall.  Randomest thing ever, and I’m glad we didn’t meet in there since it would’ve distracted me to no end.  Anyhow, our schedule indicated that Senator Tillis might join us for this meeting but that we were scheduled to meet with one of his assistants named Joe Nolan.  I mean come on…can’t get a better name than that.  In fact when I told my story he was like “Man that’s a perfect name!”  Anyways, Joe was very friendly and down-to-earth, I think we all felt really comfortable chatting with him.  And even though I’m sure – like everyone else – he was very busy, he actually made quite a bit of time to speak with us.  He listened to our stories and showed some real compassion for us and our kids.  You could really tell our stories impacted him.  He definitely wanted to pass along our stories and try to schedule some time at a later date for us to interact with a fellow staffer who dealt with healthcare matters.

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This dude was really awesome, I think we all enjoyed our time with him.  Kind, compassionate…the world needs more Joe Nolans!

Now it was time for our group to split up since there were two meetings scheduled for the same time.  3 members of the group went to meet with Congresswoman Virginia Foxx and I went with another group member to see Congressman Richard Hudson.  So back to the Cannon building we went.  I was a little nervous about this meeting since we had a very experienced group member leading the way but now it was two newbies on the case.  I wanted to be sure to have an impact and not screw everything up.

Congressman Richard Hudson

This was the meeting I was waiting all day for: Congressman Richard Hudson represents NC’s 8th District, which is my district!  Represent!  He is also an alum of UNC Charlotte, just like me.  This meeting was very important to me because I wanted to make the biggest impact for my own district.  My schedule said I was meeting with one of his staffers, Curtis, so earlier that morning I emailed him to ask if Mr. Hudson was available for even just a quick photo op.  Curtis replied quickly and said he will do his best to make it happen.  We got to Mr. Hudson’s office and had a seat…and man that is a BUSY office.  They had people coming in from a gardening club, a group talking about rural water…people were coming in and out of that place like crazy.  Finally Curtis came out to greet us and take us back to his work area.  Honestly I felt much more relaxed in this meeting, possibly because it was just two of us meeting with Curtis.  After our introductions and stories, Curtis told us he has a really good friend who just had a baby with a CHD.  I could tell that as we told our stories and explained the need for more research, the wheels were turning in his head as this became much more real and understandable for him.  He took lots of notes and asked lots of great questions.  I asked if Mr. Hudson would please consider joining the Congressional Congenital Heart Caucus, since Levine Children’s Hospital – a PHENOMINAL heart center – is right in his backyard and it would be so powerful to have him supporting local heart programs and families.  Curtis asked a lot of questions about the hospital and I gave him my card to contact me and I can put him in touch with the right person to possibly arrange a visit for Mr. Hudson.  By this point in the day I was really comfortable speaking to our asks and whereas I was nervous before, now I was like:

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I think we absolutely killed it at this meeting.  Curtis had several people waiting to meet with him, but he made them wait while he took the time to hear our story.  That meant so much to me, you have no idea.  The Congressman was still in a meeting so it looked like we wouldn’t get our photo op with him, but that was ok.  Curtis offered one better: he let me sit at the Congressman’s desk, complete with the UNCC jersey in the background (go Niners!):

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Like. A. Boss.

On the way out, we saw Congressman Hudson in the hallway.  He was obviously really busy but took the time to say hello and asked me a couple quick questions about CHDs.  I gave him a quick 30-second rundown and told him the ever-so-awesome Curtis had all the info for him.  He took a photo with us using the office’s camera, so hopefully I can get a copy of that soon.  As soon as I do, I will post it.  Before I let the Congressman leave, though, I told him a story about when he first ran for office 2 years ago.  My oldest son, Hudson, would see signs everywhere that said “Hudson Congress” and he was excited to see his name everywhere.  So for kicks we got a sign for him and took a picture of him with it.  Fast forward two years and I’m showing the actual Congressman Hudson that sign.  He got a kick out of it.  He asked if Hudson still had the sign and I said yes, and he said “Wait here a minute.”  And then he went to his office and came back with a Hudson Congress hat for me to give to my Hudson.  Dude…AWESOME.

I was floating on air after that visit…I felt like I really made a difference and I really believe Curtis understood our message since CHDs are very close to his heart via his friend.  I have already reached out to him in the hopes we can continue the conversation and maybe even schedule a follow-up meeting whenever Congressman Hudson is in his local office.

Believe it or not, though, there was one meeting left!

Senator Richard Burr

Senator Burr has been in his role since 2005 and had a very fast-paced and busy office.  We met with Anna, one of his staffers whose specialty is healthcare policy.  We all told our stories and shared our big asks.  Anna spoke a lot about the future of healthcare and policy and what Senator Burr typically does and doesn’t do.  All in all, she was extremely knowledgeable and welcoming.  Much like the meeting with Mr. Pittenger’s office, though, this one was very much businesslike (again, that’s not bad) and to the point.  We didn’t even get a photo op, but that’s ok too.  To be honest, it was hard to top the wave of my previous meeting with Mr. Hudson.  And when I thought about it, I was suddenly really tired.  It was about 2:30pm and I was hungry and wiped out.  It had been a whirlwind day.

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After lunch I went back to the hotel to retrieve my bags, get some much-needed coffee, plug in my phone and fill out some reports on our meetings.  I had a blast talking with some other people who had some really positive meetings.  In all, I felt like we had a really successful day and were able to make a really big impact.  There were about 130 total advocates this trip and every voice mattered…with follow up and getting people involved, we can really continue to make a difference.

While everyone was going to gather up to share more experiences at 6, I needed to leave by 5 to get to the airport for my flight home.  I said my goodbyes, took the metro to the airport and eventually made it home by 9:30pm.  It was a great, whirlwind adventure and while I was exhausted, I was so glad I went.  What a fantastic experience!

What does it mean for you?

This Conference was an incredible experience…in the future you should try to participate if you can.  If you can’t, though, you can still make a difference.  Here’s how:

  • Don’t forget your local government: Mayors, Governors, Representatives, etc.  Go get ’em!  Reach out to them and try to set up a meeting.  Let them know why it’s important for them to know about Congenital Heart Defects and their impact on our kids and families.  If you have a fantastic hospital in your area, encourage them to go visit and support that program.
  • Share your story!  Write a blog, join an advisory council at your local hospital, be a part of a CHD support group.
  • Learn more.  Look up CHD research, ask your child’s cardiologist about any important issues or studies related to CHDs.
  • You can still reach out to your legislators in Washington.  Every one of them is on twitter and has their own website where you can send them an email.  I promise you, someone will read it.
  • Remember that each voice is crucial to the chorus.  You may feel like your one voice doesn’t matter but that’s not true.  You are fighting for your son or daughter…NO ONE will deny you that and no one can deny the power of a parent who is fighting for their child, especially in the face of something deadly like CHDs.
  • Never…Ever…Give up.  This is a marathon and I do believe we will make a difference: day by day, little by little.

The HLHS Dad Goes to Washington (Part 1)

As you may have read in a previous post, I had a very special opportunity to attend the Congenital Heart Legislative Conference in Washington DC on February 25-26.  I was really excited about the opportunity to speak with my legislators about CHDs and how funding research could really save lives!

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

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I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

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I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

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This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

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It’s very interesting to see that there’s some idea about the genetic causes of CHDs, but the truth is – and I’m sure we all know this – we just don’t know.  That’s why the NIH needs continued funding to study CHDs!

Next up was an equally-interesting presentation from the CDC that focused on CHD facts and their financial impacts on healthcare.  This really captured a lot of it:

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$5.6 BILLION to care for CHD kids…and that was in 2009!  Imagine what it’s costing us now.  The CDC is currently trying to gather CHD across the life-span, so birth into adulthood, so we know what our kiddos can face growing up and we can allocate enough resources to continue helping them survive and thrive.  A big focus of this lobbying trip is increased funding for the CDC.  They are currently budgeted for $4 million to study CHDs, but the truth is they need $10 million to do it correctly and with the biggest impact.

With that, let’s take a look at the overall focus of the Legislative Conference:

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For the rest of Day 1, we focused on learning these 3 issues, so we could ask our legislators to support them.  The first is to continue supporting NIH research for CHDs.  The second is that increased funding for the CDC to properly conduct its research.  The final point has to do with Department of Defense funding.  Currently the DoD has a pool of money that is given as grants towards peer-reviewed research.  A physician, for example, could petition this group and receive some money towards his or her research.  The great news is that CHDs are now on that list for the program!  This is really awesome because I know there’s lots of great work going on throughout the country, whether it be work in the interstage, 3D printing, etc.  We wanted to ask our legislators to help keep CHDs on the DoD list.

So those were our marching orders: go forth upon Capitol Hill and speak passionately with our legislators about CHD research!  We may only get 30 seconds to speak, we might get 15 minutes…we might meet with the legislator, we might meet with his or her assistant.  Either way, whatever opportunity we would get would be a powerful one…because our stories cannot be denied…and neither can our passion.  But that would wait for Day 2.

Day 1 was in the books and was a whirlwind day full of travel and education.  It was great meeting new people and I was so glad I came on this trip.  We all hoped to make a big impact, and who knows…maybe one day soon our story will make its way here:

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Let’s Hear it for Charlotte!

Happy CHD Awareness Week, friends!  I hope everyone is doing their part to make people aware of CHDs and fight for more research and funding.  I wanted to take a moment and brag on the city of Charlotte, which has been home to some amazing people and providers that further the cause of CHD Awareness:

Camp Luck Conference

As I mentioned in my last entry I had the awesome opportunity to participate in the 5th Annual Camp Luck Conference on February 7th (I was even a speaker too!)

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It was a really awesome time as over 90 people registered for this full-day conference to learn about CHDs.  I got the chance to see lots of friends and even meet some new people.  My son’s Cardiologist, Dr. Sliz gave a really wonderful presentation about CHD Kids and Sports:

Sliz

It was really great how he broke down the suggested types of competitive sports for each kind of CHD.  I’m hoping to flesh out a blog post for another time based upon his presentation, so look out for that!

I also had the chance to learn about the development of the human heart, how it functions, how CHDs can develop, and the future of heart research from Dr. John Klingensmith from Duke University:

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I found it absolutely fascinating and I’m looking forward to seeing what strides we can make towards heart repair!  Kudos also go out to Dr. Klingensmith for staying and sitting through my wacky, meme-filled presentation!

This year’s conference also featured a trio of teens on the Heart Kid Panel who talked about their experiences and live with their respective CHDs.  This was really inspiring and I applaud these heroes for stepping up to share their stories…for a father of a very young heart kid, it’s REALLY encouraging to see teens who have made it through their surgeries and are doing SO well.  Trust me, it’s such a good feeling to know success for our kids is out there, it’s attainable!

Finally I got to give my presentation (sorry I don’t have a photo) to a group of victims captive audience and I have to say, it was actually a lot of fun.  Or, at least, I had a good time!  I’m not going to spoil my presentation in this post, as I’m trying to think through how to best present it on this blog.  But if you missed it, hopefully there might be a chance for you to catch it again another time.  Just sayin 🙂

Anyhow, it’s really awesome that such a conference exists in Charlotte.  I remember attending my first one last year (which was interrupted by Nolan’s admission to the hospital for low o2 sats…because that’s Nolan!) and this year’s group was WAY bigger, so kudos to everyone from Camp Luck who played a part in putting this together.  I hope this Conference continues on for 50 years and beyond, because it’s a great way for heart families in the area to learn and support one another.  I’m already looking forward to next year’s conference!

Levine Children’s Hospital

If you read this blog for, like, more than 5 minutes you know this is where Nolan’s had his surgeries and you know how I feel about this hospital.  The.  BEST.  An amazing group of surgeons, nurses, physicians, etc., working together to get CHD kids to survive AND thrive.

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I can’t say enough how fortunate I am to live here and have access to such a great facility.  And to think, this hospital hasn’t been around all that long…so the way I see it, they’re just gettin’ started!  I can imagine (and hope for) a future where CHDs don’t exist or total heart repairs are an easy reality, and these things will be lead by the wonderful people at Levine Children’s Hospital!

The Cookie Cult

Guys….seriously.  Who doesn’t like cookies?  Amirite?  If you want the BEST cookies, they’re right here in Charlotte, courtesy of The Cookie Cult (http://www.thecookiecult.com/).

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This is a wonderful business started by a local heart mom and the product is beyond addicting.  If you eat one, you’ll want to eat 41, I’m not lying.  Do yourself, and your taste buds a favor: put down those dusty Chips Ahoy, tell the Saulsalitos “see ya later”…this is the cookie you want.

Wells Fargo’s Duke Energy Center

This is one of our newer skyscrapers in Uptown Charlotte, sometimes nicknamed “Voltron”.  It’s actually a cool building and lights up in different colors at night, adding a really cool visual to the city skyline.  From what I understand it uses a lot of new technology to be energy efficient and I hear a lot of people love working there.  Last year I found out you can reach out to them regarding lighting the building for a cause.  I thought, “Oh snap, how awesome would a red and blue building be for CHD Awareness Week?”  So in November I emailed them with some facts about CHDs and giving my ask.  After review, they agreed to light up to represent the Heart Warriors on Sunday, February 8th!  Just…look…at…this:

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I big shout out to Wells Fargo’s Duke Energy Center for doing this…I can’t look at this picture and not feel proud that I live here.  The city looks gorgeous!

 

Charlotte, NC, I love that you love our heart warriors!

 

What’s the HLHS Dad Up to for Heart Month?

Hey friends, I hope you are all enjoying a superb new year so far!  It continues to be a good one for us! So February is right around the corner and you know that means Congenital Heart Defect Awareness Week (7th-14th) and Heart Months as a whole.  Last year was a blast as I got to do the #32for32 Project and this year there’s a lot of good stuff going on too:

 

Camp Luck Conference

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On February 7th I will be participating in the 5th annual Camp Luck Conference!  This is an all-day, interactive event here in Charlotte where we’ll talk about the CHD Program at Levine Children’s Hospital, sports for heart kids, dental work for heart kids, yoga/relaxation, transplants, heart mom/dad-related subjects…it’s going to be awesome.  And I am also very honored to add that I’ve been added as a guest speaker as well….ohhhh if they only knew what was coming!  I kid, I kid…it’s gonna be great and I’m looking forward to connecting with other heart families and caregivers.  I will promise that we’ll laugh and there will definitely be memes involved.  If you’re in the area and want to attend the conference you still have some time!  Oh, and it’s FREE!  And for the college kid in you, that includes free breakfast and lunch…WHAT?  So what are you waiting for?  Sign up now: http://www.campluck.com/news-and-events/2015/2/7/5th-annual-camp-luck-conference

 

The HLHS Dad Goes to Washington

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So part of the reason I started this blog was to connect with other heart dads (and moms too) and to hopefully play a role in making a better world for Nolan and his fellow heart warriors.  I’ve been blessed with the chance to talk to many people about this, including fellow heart parents, medical professionals, the media, etc.  This time I get to take Nolan’s story to the next level: on February 25-26 I have the amazing opportunity to participate in the Congenital Heart Legislative Conference in Washington DC!  Thanks to an generous opportunity from the Pediatric Congenital Heart Association I will join up with other heart families to advocate for more CHD research and funding on Capitol Hill.  I will get the chance to share a small portion of Nolan’s journey with my member of Congress and hope to inspire some change.  It is going to be a whirlwind 2 days but man I am SO excited….I plan to pack my red bow tie and my blue shoes to represent CHD Awareness colors on Capitol Hill and make sure everyone who will listen hears about our heart warriors!

I’d love to know what my readers are doing for CHD Awareness Week and Heart Month: please share in the comments!