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An Upcoming Cath

Hey friends!  This will be a brief post, but I just wanted to let all my readers know that on Tuesday, March 21st, Nolan will be going in to Levine Children’s Hospital for a scheduled cardiac catheterization.  They’ll be taking a good look at his heart function, pressures, and how well his Fontan circuit is doing.  Moreover they plan to do some things to help bring up his oxygen saturations, which have been just a little on the low side post-Fontan.  We’re expecting to be there overnight, which is not unusual for Nolan.  We appreciate any prayers, kind thoughts, good vibes, etc.  I’ll post some updates here later on but if you want quicker updates, you can definitely visit Nolan’s facebook page.

THANK YOU!!!

NolanBowtie

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CHD Awareness Week: A Recap

So before you say anything, I realize I am WAY late on this post.  Better late than never, right? It occurred to me that I never posted any kind of recap on what I was up to for CHD Awareness Week, which – if you remember – was waaaay back in February.  So here’s some background:

I wanted to do something that raised CHD Awareness but also gave back to the community.  Sometimes that’s a really difficult thing to do.  A couple years ago I did 32 acts of kindness for my 32nd birthday and it was amazing, but it also talk almost all of 4 days to complete and I needed something that could be accomplished in one day but was still impactful.  The problem was, I couldn’t think of a single thing.  I loved the idea of acts of kindness but how to freshen it up for 2016?  Then the answer came…a heart.  But not just any ol’ heart: a heart that gave back and raised awareness.  You see, the plan for this year was to do 10 acts of kindness in my area in 10 specific locations…and when it was all said and done and all those locations were mapped out, it would look like this:

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At each location I would leave behind information about Congenital Heart Defects.  So after coming up with a plan and coming up with all my stops, it was time to kick it off on the morning of February 10th, which was right in the middle of CHD Awareness Week.

Stop #1: Nolan’s preschool

The first stop was to Nolan’s school: we wanted to bring some heart balloons and treats to his teachers to show them how much they really mean to us.

Admit it, he's stylin'

Admit it, he’s stylin’

There are not a lot of preschools lining up to take a kid with a heart defect AND a feeding tube.  But they graciously took Nolan once they saw he so desperately wanted to be with his twin brother in school.  And it’s been so great for him: he has learned a lot and his teacher is the BEST.  The visit went nicely and I think Nolan enjoyed giving out the balloons and CHD awareness info.  And then we were off to the next stop!

Stop #2: Mint Hill Public Library

This stop was a lot of fun because we made some really cool sun catchers out of red and blue beads (CHD Awareness colors) to bring to the library so they can be displayed in their front window.

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We also donated a few books, including “My Brother Needs an Operation,” which is a CHD book that was donated by the super awesome Baby Hearts Press (please visit them here, and buy like 10 books!).  Nolan loves books and was excited to bring some to their staff.  Wanna know something wild?  So while I was planning this particular stop, I was emailing the manager of the branch, who was very helpful but wasn’t there yet when we arrived.  When I followed up with an email thanking him, he told me he also had heart surgeries in his youth, “with the scar to prove it.”  How awesome is that?  It’s amazing the connections you find out there!

Stop #3: Robinson Presbyterian Church

So we were doing well on time (I was trying to keep on a schedule) and everything was going quite smoothly.  This stop, though, was one I was really unfamiliar with and ended up being one of the most touching. You see, when I came up with this plan of a heart-shaped map, I drew the heart first around the city then worked on figuring out what fell along that route.  Sometimes that was easy, sometimes it wasn’t.  In this case, my Google maps search found this church in Charlotte.  I’ve never been there and to be honest I can’t recall ever even passing by it before.  But I found out that they had a ministry called Room at the Inn, where during the colder months they bring the homeless in and give them a warm meal and a warm place to sleep before loading them up with more food and some toiletries.  I offered to collect some toiletries for their program, which they were happy about.  I collected these by hosting a pizza party at our house and having attendees bring some toiletries to be donated.  So we ate good and we did good: thanks all my friends and neighbors!

Just a few of the items we collected

Just a few of the items we collected

Anyways, while I was arranging this drop-off, the guy on the phone told me no one would be in the church office, but the lady who ran the church preschool would be there and to drop off the items with her.  No problemo.  When I arrived at the church, I was also greeted by a reporter from our local NBC affiliate, WCNC.  He was really awesome and wanted to share our story and follow me around a little bit.  Nolan thought that was awesome.  I walked up to the preschool door and rang the bell: holding a big bag of toiletries, a toddler, and being followed by a cameraman.  This was gonna freaking this lady out, I was sure of it.  But when I explained to her what I was doing, she was overcome with emotion.  Apparently she was just told “Some guy is dropping stuff off for the homeless” but she got no other info.  Turns out a very good friend of hers in another state had a child very recently who was born with a CHD and just went through their first heart surgery.  I totally didn’t expect this.  We chatted for a bit and she got to see Nolan and how well he’s doing.  At the end I gave her a big hug and thanked her, and she instead thanked me…she told me it was the best part of her week.  I can’t express how touching this was…and how clear it is that CHDs affect us all!

At this point I said goodbye to my wife and Nolan so they could head back home and get out of the cold.  Off I went with the cameraman to more stops!

Stop #4: Center for Community Transitions

This is another group I had heard of before but didn’t know much about.  When I looked them up online I found that they’re a program to help those with criminal records and their families turn their lives around.  A big part of the work they do revolves around schoolwork and tutoring for kids whose parents might be in prison or just getting out.  For this program they needed school supplies and I was more than happy to help.  So I brought a couple bags of supplies to the Director and Volunteer Coordinator:

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They were so thankful for the items and I told them this, and I will forever believe it: I hope that those supplies can lead to a child somewhere in our community being VERY successful in school…and I hope that kid grows up, goes to med school, and finds the cure to CHDs.  Wouldn’t that be amazing?!  It sounds corny, but I truly hope and believe!  To find out more about the amazing work of this group, click here.

Stop #5: Urban Ministry Center

This was my final stop with the cameraman and he was a lot of fun to hang with.  Urban Ministry Center is an amazing program that seeks to end homelessness in the Charlotte community by helping the needy find homes, providing food, helping with access to healthcare, and providing laundry and shower services.

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This day in particular was pretty freezing, even for Charlotte, so as you can imagine the line to get in this place was super long.  My job for the hour was to work in the mail center, which I found interesting.  They allow the homeless to use their location for a residential address, so they can apply for jobs, receive important mail, and even apply for a free government cell phone so they can call about jobs and schedule interviews.  That’s pretty awesome and I never thought about how much power was tied to having an address.  So I hung out there behind the desk and whenever a neighbor would come asking about his or her mail, I’d check their ID and see if there was anything waiting for them.  Some people didn’t have anything and they were cool with that…some people had stacks of stuff…some people were upset because they were waiting on something.  Nothing too out of the ordinary, though, and I really enjoyed my time there.  There were SO many people waiting for a hot meal and for other services…it really made me focus on just how good I’ve got it in my life, even on my absolute worst day.  I still have a place to sleep, food to eat, and clean clothes.  We take so much for granted.  To learn more about Urban Ministry Center, click here.

Stop #6: Levine Children’s Hospital

You know there wasn’t any way I was doing all this and not giving back to the place that saved Nolan’s life, right?  I always love going back to visit our “family” in the CVICU.  As a visitor, of  course.  I brought the CVICU staff some more of those sun catchers as well as the heart balloons.  But the big part of my visit was to present them with a very special book.  In the days leading up to this, I reached out to heart families in our area whose kids were treated in that particular CVICU.  I asked for stories, notes, and photos to be included in this book of thanks.  The goal was for the book to be kept on the unit so that whenever the staff was having a hard day or was feeling down, they could flip through the pages and see the proof of their hard work and the many lives that were saved.  It made me so happy to share this with the staff and I could tell they were genuinely touched by it.  We wanted to provide something with real meaning for these folks, and I think we did well.

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It’s always crazy to be back on that unit and hear those familiar sounds.  I told them Nolan and I would be back soon…but not for long.  And that hopefully we’d never have to see them again (of course I meant that in the nicest way possible).  Love you guys!

At this point I realized I was starving like a BEAST.  So after getting some grub, I was off to the next stop.  And I had to hurry because I was a little bit behind schedule now.

Stop #7: Police & Fire Training Academy

In a past life I used to work for the police department as a civilian employee and enjoyed my time there.  One thing I realized was that police officers really like to eat good stuff.  So I stopped at a local Panera and picked up a bunch of bagels to bring to the Police & Fire Training Academy for the staff and recruits.  It was pretty fun to be back in this place, it’d been so long

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The receptionist in the lobby was so friendly and we spent time talking about Nolan and his journey.  She said she was so happy someone came to do something nice for their team and that it would go a long way.  She said she’d share Nolan’s story with everyone and their thoughts would be with him.  Can’t ask for better than that, right?

Stop #8: Someone’s About to Get Caffeinated! 

So this is the point where the stops became quicker and I don’t have any more photos, but they were still fun. At this stop I pulled into the drive thru at Starbucks and ordered for myself and then paid for the person behind me, leaving behind some CHD info.  The barista at the window read over the little card I gave him and he was like, “This is really cool…my daughter works at the ICU at Levine Children’s”.  Small world, right?

Stop #9: Another Panera

This stop was kinda funny because I planned to buy someone’s lunch at Panera but didn’t exactly know how to execute the plan since when I got there I was the only person in line.  Whoops.  So I acted like I was pondering the menu…for a looooooong looooong time.  Finally a man came in with his mom.  That’s when I pounced: I ordered a gift card and then turned it around and handed it to the woman with the CHD info and said “Enjoy lunch: have a great day!” and left.  She looked at me like I was NUTS.  And yes, I am.  I ended up getting a very nice email from that gentleman about a week or so later.  It was really cool of him to reach out to me!

Stop #10: The Final Stop – Charlotte Pediatric Clinic

While Cardiologists get all the fame and the glory, I wanted to take some time on this day and recognize Nolan’s pediatrician, who is an amazing doctor…and an amazing human being.  Seriously, Dr. Prosser makes sure that there’s always an extra nurse available to help when my wife visits and so she won’t have to wrestle all 3 kids during the whole visit.  She’s super flexible and kind and makes us feel welcome and like we’re family.  So we brought her and her staff some flowers and balloons and cupcakes.  A very sweet ending to the day!


 

I was thankful for the opportunity to take a day off work and run around the city doing fun, nice things for people.  It’s grounding for me to know that there’s so much need and so many great people doing hard work to meet those needs.  Puts my struggles into perspective for sure.  Plus I was able to spread the word about Congenital Heart Defects, and I know deep down inside that will make an impact too.  What will CHD Awareness Week in 2017 hold?  I have no idea, it’s too early for that.  So in the meantime, please check out the WCNC story on my CHD Awareness Project: Charlotte Dad Honors Son.

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.

Croup Doggy Dog

I have to say, Nolan really enjoys heart month…he enjoys February so much that he decides to visit his friends at Levine Children’s Hospital with a visit to the E.R.  Happened last year due to low O2 sats caused by ear infections…on Sunday he decided to make it two years in a row.

Let’s back up a little bit: the crud has been going through our house Old Testament plague-style…you know how it is when you have young kids.  One gets sick and then it’s like mass pandemic in your own home.  Our oldest had a bout of strep throat a few weeks ago and then eventually I caught one of those gross, phlegmy colds (which I seem to now get like every 4 weeks or so).  We tried REALLY hard to keep Nolan from getting sick, so it was lots of hand washing and hand sanitizer and things seemed to be going ok.  Well the other night I was doing a late feed on Nolan and he started coughing…except it was this weird cough…like a seal.  Yes, like “hork hork hork” kinda seal.  It gave me some pause and I stood there in his room keeping an eye on him, but it didn’t seem to bother him too much and when he was awake, he was his usual self, no coughing.

So on Saturday, for Valentine’s Day we had some friends over the house and it was a great night…we had a blast and Nolan enjoyed himself and then went to bed easily.  At 5am Sunday morning I awoke to his aquarium-style seal show, except this time it lasted a lot longer and he was sounding very agitated.  I picked him up and took him into the bathroom to check for the tell-tale respiratory issues (blue nail beds, feet, lips, etc), but alas everything looked fine.  But he was breathing a little fast and wouldn’t calm down or stop coughing.  At this point my wife was up too and trying to help calm him down while we hooked him up to his O2 sat monitor.  It showed a pretty high heart rate and sats in the low to mid 70’s, which is below his typical mid-80’s.  Our local hospital system has a handy phone app where you can check operating hours and wait times, and I checked to see if the Pediatric Urgent Care nearby was open, but it wasn’t slated to open until 10am.  So we had a choice to make: do we wait it out until 10?  Do we take him to the regular 24-hour urgent care or local ER (where we’d get the “What the heck is HLHS?” question)?  Or do we just take him to Levine Children’s Hospital’s ER?  We decided on the latter, so I got changed and put his car seat in my car.  When I got back inside, Nolan was dressed and wearing his coat and hat…and go figure…Nolan was happy as could be.  Little stinker!

So off we went, better safe than sorry.  On the way there I called his cardiologist’s office…I knew no one would be there but that I would be routed to an after-hours operator.  I gave him the run-down and said to just pass along the word to the cardiologist on-call and they could call me if they wanted.  I just like them to be aware when Nolan is about to go to the ER.  You wouldn’t have known Nolan was sick because he was in the back just talking and laughing and being a ham.  We got to the ER at Levine Children’s Hospital and luckily were the only people in the waiting area (thank God).  We were greeted very warmly by the front desk person and were called immediately back.  The nurse took Nolan’s vitals and was VERY sweet to him.  By this point I had Nolan’s fav show (Yo Gabba Gabba) loaded up on my phone to keep him calm and the nurse was just chatting with him about DJ Lance, and Brobee, and all the other characters on the show, which made Nolan (and me) happy.  The Charge Nurse came in to introduce herself and let us know that it was currently shift change for the physicians, but they would be in as soon as possible.  I really appreciated that communication.  So we hung out and watched more Yo Gabba Gabba:

CroupDoggyDog

Bill, Nolan’s RN for the morning, came in to get Nolan situated and comfortable: he was really friendly and attentive and kept us updated on everything.  Eventually three physicians came in to see him over the course of probably the next 30 minutes.  They were all really awesome: the first physician said it sounded like he had croup, but that since she couldn’t hear him cough she wasn’t 100% sure.  Luckily I told her I had a video of Nolan coughing so she waited patiently while I pried my phone away from Nolan and played the video…immediately she knew it was croup.  She said another doctor would come in just to be sure.  The next doctor was named Dr. Magill and she was incredible: you could tell she took the time to review Nolan’s medical record. She knew his physician, knew his ideal O2 sat levels, and knew about his previous ER visits.  We discussed, in particular, his visit 2 Novembers ago when he had some fluid on the lungs.  I told her that this bout of illness was way different from that and he was nowhere near that level of sick.  She listened patiently to me and definitely took into account my thoughts on it (Which I really appreciated) and said she just asked because she was trying to determine whether or not to get Nolan a chest x-ray just in case.  She felt, though, that it would be best not to agitate him and passed on the x-ray.  While Nolan didn’t acknowledge it or realize it, I KNOW he appreciated that too!  She was really sweet and attentive to Nolan as she checked him out, even letting him play with this light-up bird she had on her stethoscope.  Dr. Magill then explained what croup was (a viral condition that causes inflammation of the upper airways) and ordered some tylenol for a little bit of fever and a steroid to help relax some inflammation and help with the cough.

The third doctor came in and was just as sweet.  She explained that the steroid was long-acting and he would only need one dose: by the time it wore off he would be past the worst of things anyway.  She recommended a vaporizer if we had one but otherwise was ready to discharge us due to Nolan’s really good vitals.  I mean just LOOK at those sats!

HighSats

As we packed up to head back home, Bill returned and helped me get Nolan situation.  He reviewed more info about croup with me and some more discharge instructions.  The Charge Nurse also came with some stickers for Nolan and his brothers.  As we walked out of there together, Nolan was in a happy mood and so was I.  It was nice not to be admitted for something this time around, and we managed to get home just before 9am.

I say this all the time and can’t say it enough: Levine Children’s Hospital is the cream of the crop…but this visit to their ER was just exceptional.  It seemed like everyone there made it an absolute priority to make us comfortable and to make sure Nolan was enjoying his short stay.  I know that waking up at 5am and making a trip to the ER was not an ideal way to spend my Sunday morning, but it was beyond what I could imagine.  Nolan is doing quite well now: the meds helped a great deal and the vaporizer is helping too…we couldn’t have done it without that awesome LCH staff!  Thanks guys!

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!)

CampLuckConference

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:

Klingensmith

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.

LCH Awards

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/).

CookieCult

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:

WellsFargoAwareness

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

CampLuckConference

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

congenital-heart-legislative-conference-300x300

 

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!

Thankfulness pt. 1: Levine Children’s Hospital

We’re coming up on Thanksgiving and I like to use this time to reflect on the things I’m thankful for.  I’m trying really hard not to re-write the last Thanksgiving post I did.  So what I’ve decided to do is break up the things I’m thankful for into a series of posts (as of this writing, I haven’t decided how many).

Today I want to express for an important place in our lives: Levine Children’s Hospital.

LCH

I often joke with people that LCH is our home away from home, at least it was during Nolan’s first year of life, between 2 surgeries and the occasional admission.  Lately I’ve been reflecting a lot on LCH and how much it’s meant to us.  If you ever go there, it’s actually a pretty cool place: it’s bright, cheery and colorful with chairs in the lobby that look like bacon and lots of fun art throughout the building.  The staff is friendly and there’s even a radio station in the lobby where lots of well-known recording artists come to visit.  It’s a cool place, even though no one really wants to be there as a patient/family member.

We had so many staff members there who treated us and Nolan was so much dignity and kindness.  I will never forget nurses going above and beyond to ensure Nolan was so well cared-for: not just medically, but as a human being.  They would give us meal tickets daily to make sure we could get something to eat, they would stamp our parking passes so we didn’t have to pay for parking, the doctors would include us in daily rounds.  They answered my phone calls and my questions, whenever they were asked.  They held conversations when appropriate, and turned down the lights and let me sit quietly with Nolan on those evenings when I was just plain exhausted.  It is a special place and I can’t speak more highly about Levine Children’s Hospital.

I’m lucky now that I can work next door to LCH, so I’m in an out of there whenever I can, and I help them with whichever program I can.  I do that because I’m proud to be affiliated in any capacity with Levine Children’s Hospital, but I do it moreso because of all they did for us and for Nolan.  It’s my way to give back.  In fact, this Halloween I had the opportunity to participate in a Halloween Carnival at LCH where the patients and their families can come trick or treat right there in the hospital.  I was so on that, because I know what it’s like to be in the hospital during holidays (Christmas and New Years, in our case) and I know how surreal it makes things.  And I really appreciate how hard the LCH staff works to bring some normalcy to kids’ lives.  But I needed a costume because, I mean come on, it’s a kids hospital…you HAVE to dress up.  Then it occurred to me: I am going to dress up as Dr. Peeler, Nolan’s heart surgeon!  I got a picture, made a mask, got some surgical scrubs, and even had some help from a Nurse Practitioner in borrowing Dr. Peeler’s actual lab coat:

Peeler Costume

Yeah it was funny and a lot of the LCH staff were really tripped out by the Peeler look-alike.  It was fun, and I participated in the event for the kids and their families.  The costume was a silly way for me to thank Dr. Peeler for everything he does for heart kids and our Nolan in particular.  We are so dependent on his skills.  Again, thank you Dr. Peeler!

We’ve been really blessed to have seen Nolan making some really wonderful strides during the 2nd half of this year: walking, eating more by mouth, being more vocal, even starting preschool one day a week.  These are some major steps he’s taken to becoming all Nolan can be. When I lay Nolan down to sleep at night, I always try to take a moment to just watch him and take a moment to admire how far he’s come.  I just want to use this post to say thank you to the staff of Levine Children’s Hospital…keep on being the best.  Because every night I get to lay Nolan down for bed means one more day I got to spend with my wonderful son.  And we get that time with Nolan because of your work.  I know sometimes you get really tired and stressed and it can be emotionally taxing…but from the bottom of my heart I appreciate your work to give my son his life and to give us an opportunity to see him thrive.  That means so much to me and if I could I would walk the whole building to personally thank everyone who has worked with us for their smiles, empathy, professionalism…heck, even for the chocolate milk in the nourishment rooms (SO good).  Every moment we make with our son is because of the hard work the LCH staff put into him.

So this Thanksgiving…each and every day…whenever I lay this sweet boy to bed, I want to thank you…

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Y’all Better Recognize

You guys know I can’t say enough about how awesome Nolan’s care was at Levine Children’s Hospital.  They are a first-class hospital bursting at the seams with amazing staff.  Well I am really excited to share some great news with you:

LCH US NEWS

Yes, LCH was ranked as one of the best Children’s Hospitals by US News & World Report in 5 specialities, which includes Cardiology!  Yeeeeeaaaaah buddy! 

Last week we were invited to the announcement of the rankings at Levine Children’s Hospital, which is always an honor when they choose to think of us and include us in celebrations like this.  It was great to see heart families we know, and even to meet new heart families. 

I know that no one wants to have their child in a Children’s Hospital…it’s a really tough thing to go through…but Levine Children’s Hospital is the cream of the crop and we’re fortunate that they’re right in our back yard.  There was a point during my lengthy unemployment where we briefly entertained the idea of moving if we found good job prospects, but it never happened and we stayed put.  If we were to move away and THEN found out we’d have a child with HLHS, I’d dread to think that options would be available wherever we moved.  There are lots of great Children’s Hospitals throughout the US, and thank God for that, but I’m glad we have an excellent one right here.  They treat us like family and it’s a special feeling to know you’re not just a number.  And – my goodness – their lobby has chairs shaped like bacon.  LIKE…BACON.  Win!

I’m proud to say my child received awesome care at Levine Children’s Hospital, and I’m confident telling people that it’s an awesome place to be should your child need care.  So keep up the good work, LCH!  We’re proud of you!

Read more about LCH and their recognition here: http://www.carolinashealthcare.org/usnews-lch

NolanLCH

Being a Fan of the Best Team Ever

1927Yankees

For those of you who don’t know, I’m a HUGE fan of the New York Yankees.  I like to joke that “We only cheer for one team in our house.”  The photo above is of the 1927 New York Yankees, often noted as the greatest team ever in the history of baseball.  Why?  They had a lineup delightfully called “Murderer’s Row”…they were an offensive juggernaut, headlined by a #3 hitter you may have heard of named Babe Ruth.  Oh, and if you wanted to simply walk the Babe, the next hitter was Lou Gehrig.  Yeah, you were pretty much screwed if you were an opposing pitcher.  In my era, the 1998 Yankees were an absolute beast.  They were a lot different than the ’27 team, though.  They didn’t have a similar offensive force…they wore you down as a team full of patient hitters and great pitching.  They won 116 games and pretty much dismantled everyone during the season, playoffs included. 

So just before you start rolling your eyes thinking this is all about the Yankees, it’s not…I want to talk about another epic  team that is like none other: my son’s heart team.

SangerTeam

The Pediatric Heart Care team through Sanger Heart & Vascular and Levine Children’s Hospital is the BEST.  Period.  These folks work really hard to make sure that your child has the best care and that you feel informed and valued as a parent, and that’s pretty special.  When you come in for appointments, you’re always welcomed warmly.  When you have to see a cardiologist, any of them will be patient and informative.  When your child is hospitalized, they go out of their way to be helpful and look out for the best interests of your child.  Yes, I do wanna brag…Nolan’s team is the best around. 

Want proof?  Here’s your proof: take some time to read through the Congenital Heart Services and Outcomes book http://www.carolinashealthcare.org/documents/lch/LCH-Congenital-Heart-Center.pdf

Want numbers?  In 2011, they performed 302 surgeries with a mortality rate of 2.4%, better than the national average of 3.2%.  Better recognize.

They’re a great team and they work so well together, and it’s all for the benefit of the little ones who are under their care.  I trust them and wouldn’t want any other team. 

I could put a post daily on this blog thanking this team for all they’ve done for Nolan, and it would be enough, and it wouldn’t even come close to being enough to showing how awesome they are.  So I want to thank you, Heart Team, for being who you are, for valuing our voice as parents, and for sharing in our excitement when our kids do well.  Trust me, it means a lot to see you all involved in different events, because it shows that your care extends far beyond the hospital or doctor’s office.  Having a CHD baby is like being in a club that no one necessarily wants to be in, but I’m thankful to have you all on our side.  I’m proud to cheer you on as you cheer on my son.  I don’t know where we’d be without you.

And finally I’ll leave you with a quote from the great philosopher Babe Ruth: “The way a team plays as a whole determines its success.  You may have the greatest bunch of individual stars in the world, but if they don’t play together, the club won’t be worth a dime.”

32for32 Project Complete!

For the past few weeks my wife and I have been doing these free youtube workouts from Fitness Blender.  They’re pretty awesome and you should check them out.  Anyhow, at the end of every nearly barf-inducing workout it will say “WORKOUT COMPLETE” on the screen and it feels like you made it.  Then you want to eat a whole pizza.  I’m just kidding. 

Anyhow, it feels good to accomplish something, whether it’s a workout, assignment, or a big project.  In my last post I wrote about my 32for32 Project: I was going to do 32 acts of kindness for my 32nd birthday in order to educate people about Congenital Heart Defects.  Well I did it!  PROJECT COMPLETE! 

I worked pretty hard to plan out this project, choosing where I would go and when, and I  did a lot of early legwork to download wish lists and contact the people I needed to contact.  I did a really awesome interview with the Union County Weekly, who posted a wonderful article on their front page, and I even did a quick radio interview with New Life 91.9.  As we got closer to the 14th, the day the project was to start, I ran into some problems…SNOW.

SnowInformer

No, not him.

So the Charlotte area decided to have the most snow in a decade.  A whopping 8 inches.  Now where I’m from in Connecticut, that’s child’s play…but here?  Freakin’ APOCALYPSE.  There’s no snow plows and everyone just gets stuck at home.  Well of course, the snow was still on the ground on Thursday, so I got several messages from my 32for32 stops that they would be closed on Friday.  Great.  I ended up having to be really creative with changing my schedule around to accommodate everything or even add new things.  In the end it all worked out.

So on Friday we decided to brave the snow together as a family (it was pretty melty by then) and hit the ground running.  By Monday the 17th at 4:30pm, I was DONE with the project.  Here’s the list from 1 to 32:

Excited to say the 32 for 32 Project is complete! Here’s the complete rundown of the 32 acts of kindness:

1. Welcome our new neighbors
2. Help a neighbor get her car up her snowy driveway
3. Giving scratch-off tickets to a waitress at a local pizza place (she won $20)
4. Buying someone’s meal at that pizza place
5. Buying a gift certificate from the pizza place and giving it to a cashier at Fami…ly Dollar
6. Bringing food and diapers to With Love From Jesus

7. Bringing donuts to the Hemby Bridge Fire Department to thank them
8. Paying for someone behind me in the drive-thru
9. Bringing fresh cinnamon bread to Union County Health Department Employees
10. Bringing clothes for a tough little heart baby
11. Donating food and other items for the Union County Community Shelter
12. Giving Blood with the Community Blood Center of the Carolinas
13. Going to Great Clips and paying for someone’s haircut
14. Bringing lunch to one of the Producers at church
15. Donating clothes to Goodwill
16. Giving a gift card to a Starbucks barista
17, 18, 19, 20. Cards for some special people
21. A card for a deployed soldier via Operation Gratitude
22. A gift for our mail carrier
23. Reading a story to kindergarteners at Poplin Elementary School
24. Donating formula to H.E.L.P Crisis Pregnancy Center
25. Bringing bagels and CHD Awareness bracelets to nurses at Levine Children’s Hospital
26. Gifts for a new heart baby in the hospital
27. Bringing donuts for the residents of Ronald McDonald House
28. Donating clothes to Crisis Assistance Ministry
29. Donating 20 pounds of items for Second Harvest Food Bank
30. Donating clothes to Second Chance Boutique
31. Bringing pantry items to Matthews HELP Center
32. Bringing 4 dozen balloons to abused & neglected kids at the Children’s Attention Home

WOW.  I was really humbled by the experience.  I met some great people, I hopefully made an impact, and I got to share the news about Congenital Heart Defects! 

 
I have to say that some of the acts of kindness stood out to me.  First was the Union County Community Shelter: I’ve volunteered there before, but this time I noticed 4 or 5 little children there…around 4 or 5 years old or so.  It was sad.  I have to say my family is blessed…we don’t have a lot, but we have food and a roof over our heads, thank God. 
 
The second, of course, is getting to visit the CVICU staff at Levine Children’s Hospital.  They’re like our 2nd family and we love them to death!
 
I never read to a classroom of kids before, and I was a little nervous about reading to kindergarteners.  Oh man, they were awesome.  We read a funny book and they were so well-behaved and polite.  I loved it and I can’t wait to do it again!
 
As I get pictures from the project, I will work on posting them here with some more stories from my experience.  I just want to remind everyone that the 32for32 Project wasn’t about me…it was about my son and all the other heart kids out there who need a voice.  It’s about those agencies who depend upon the kindness of others to help them feed the hungry and clothe the naked.  I want to encourage everyone to try their own Acts of Kindness Project for their birthday…it will really open your eyes to the needs right there in your back yard.  And I am a firm believer that when you give of yourself to do kind things for others, your situations don’t seem half as bad. 
 
Acts-of-Kindness