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CHAMP Graduation!

Some time ago I wrote a post about the CHAMP Program at Levine Children’s Hospital (read it here: https://hlhsdad.wordpress.com/2014/01/08/the-champ-program/).  Long story short, the CHAMP Program was designed by the heart team as an effort to keep heart babies healthy and surviving during the period between the Norwood Procedure and the Glenn Procedure (aka the Interstage).  From Feb 13, 2013 to August 7, 2013, we weighed Nolan everyday, read his pulse ox, and recorded it in a binder.  After the Glenn Procedure was complete, we were told we could throw the binder away.  Did we throw it away?  Absolutely not, but it was a great feeling to know he was past this point and on to bigger things!

Well yesterday was a very exciting day as we got to bring Nolan and join in with 5 or 6 other families to celebrate our little heart warriors with a CHAMP Graduation ceremony at Levine Children’s Hospital! 

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The Ceremony was a lot of fun: we got to see all of our friends from the LCH staff, including Nolan’s absolute fav nurse:

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And even Dr. Maxey, who did Nolan’s Glenn Procedure:

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It really makes a heart daddy proud to hear everyone gush about how well your little one looks.  It’s always great to get the opportunity to see everyone when it’s NOT for an appointment or, even worse, an admission of some sort.  It was really good to meet other heart families as well: some who we’ve met before, some who we’ve been communicating with on Facebook, and some who have even read this blog (I was genuinely touched by that).  I think it’s good to get heart families together like that so we can continue to encourage each other…and show of our little monsters too!  Of course, another cool thing was having Greg Olsen in our class as well, since his son finished the CHAMP program just before Nolan did.  I can’t say it enough, but it’s always really cool getting to chat with Greg: he takes the time to talk with everyone and be the best help possible.  I know he leads an incredibly busy life (and man, did the Panthers have an awesome year or what?!), but he always takes the time to talk, and I always enjoy it:

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Nolan also got some media love that day (check it out on his facebook page: facebook.com/SupportTeamNolan).  He was loving all the attention, I know that’s for sure!

Overall it was an awesome time, and it was a great honor to meet all the other awesome families:

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Most importantly, though, I’m really glad we all got to do it as a family:

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So congrats to all the CHAMP Grads!  Onward to bigger things!  Get a job!  Just kidding.

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The HEARTest Yard

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Early on in this blog you recall that I wrote a post about Greg Olsen from the Carolina Panthers, who also welcomed twins a couple months before we did.  One of his twins, like Nolan, had Hypoplastic Left Heart System.  Greg has been an incredible spokesperson and advocate for CHDs and HLHS, and it was really cool to have him right here in our city.  While we were in Progressive Care with Nolan post-cath, I saw on twitter that Greg would be doing a presentation there at Levine Children’s Hospital.  I tweeted Greg and asked if anyone could come and he said yes.  So while Bekah was working on discharge with Nolan, I went down to the lobby to check out the ceremony. 

Most of the cardiac team was there, including a lot of Nolan’s doctors and his surgeons and nurses.  The media was there too and some other heart families.  I just hovered around the back trying not to get in anyone’s way…plus I just spent the night at the hospital so I looked like a complete wreck and I didn’t want anyone to think I was just some crazy person who stumbled into the lobby.  I did get to meet someone named Casey who was a heart mom and her son Murphy, who also has HLHS.  It occurred to me that Murphy was the first HLHS kid I had actually met.  And he looked GREAT!  Completely healthy and cute.  I got to chat with Casey for a little bit about Nolan and how things have been going so far.  I also got to see Nolan’s surgeon, Dr. Peeler.  I was actually really excited to see him and I said, “Hey Dr. Peeler!”  He said hello and moved on.  Good enough for me.  Then the ceremony started.

It began with someone from the Carolinas Foundation talking about Greg’s family and their willingness to support LCH and the heart program.  Next up was Dr. Peeler:

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He talked about his experience with HLHS and particularly how the “interstage,” which is the period of time between the 1st and 2nd surgeries, is very critical.  He said that the staff at LCH managed to get HLHS kids to survive via the first surgery…now he wants to ensure that HLHS babies THRIVE after their first surgery.  I was fascinated.  This was good stuff.  He talked about how Greg Olsen’s efforts have allowed them to develop a program called The HEARTest Yard, which will help parents financially with in-home nursing care, physical therapy, speech therapy, etc., during this interstage period.  You know, I was SO thankful to have Dr. Peeler as Nolan’s surgeon…I knew he came with a lot of credentials and recommendations, but it wasn’t til this moment that I realized that not only did he know what he was doing, but Dr. Peeler REALLY cared about the kids he treats…he doesn’t just want them to survive, but to thrive…and he realizes it’s a team effort.

Next up was the man himself:

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Greg Olsen came up and spoke about all the fundraising they did to help develop The HEARTest Yard (over $230k!!!).  He talked about how he had dinner with Dr. Peeler and said “You’re the expert…so how can I help?” and Dr. Peeler laid out all his ideas about helping kids through the interstage process.  Greg proved to be very well-versed in the heart program and HLHS and I was really happy to have an ambassador like him in our corner.

After the ceremony was over and the big ol check was presented, I actually got an opportunity to meet Greg’s wife Kara.  I told her that we also had an HLHS baby that was a twin and she seemed genuinely excited to hear that since it’s not a common thing.  She was very nice and took quite a bit of time to chat with me.  Finally I got a chance to meet Greg and talk with him for a few minutes.  I told him about Nolan (he even said he remembered my tweet…yeahhh boy) and thanked him so much for everything he did.  He’s a nice guy…and big as a house.

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During all this, Nolan was discharged and he came downstairs with Bekah, who also got to meet Kara Olsen.  It was really nice that I got a chance to be a part of this.  It’s funny, Nolan’s cath was postponed twice and it kinda got annoying, but this time it worked out nicely.  It was good to meet other heart parents and feel the love!

The Carolina Panthers

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Ok, you’re probably thinking, “Here he goes talking about football one post after talking about his son’s surgery!”  And yes, I’m gonna talk football, but not in the way you think.  This was special.

Towards the tail end of Nolan’s first day at CVICU post-surgery, the staff at CVICU gave us a sleep room.  This was AWESOME.  It was a private room with a big bed and private bathroom, on the same floor but set away from everything.  It was nice and peaceful and it was SO needed.  We were wiped out and slept like rocks.  If your hospital offers you sleep room, USE THEM.  Seriously!

Anyways, the next morning, we went to check in on Nolan (he was status quo) before making the tough choice to leave him for awhile to go home and check on Grant and Hudson and get some fresh clothes and whatnot.  We rode the elevator down to the lobby, still kinda in a fog from the day before.  As soon as we stepped off the elevator, we were greeted by a bunch of Carolina Panthers Cheerleaders and staff.  Don’t get ahead of yourself, this is not a “hurrr hurrr cheerleaders!” post; they were actually inviting us to a Christmas party the Panthers were throwing for patients and families.  While that was cool, I politely declined, saying our son just had heart surgery yesterday.  One of the cheerleaders asked how old he is and I said 8 days old.  And then they all insisted we go in to the party.  INSISTED.  So we went.  It felt kinda weird, actually…we didn’t have a kid with us and we were all ragged from the previous days.  But I’ll tell you, the staff really went to a lot of effort to make us feel welcome.  They were giving out toys to all the kids and they told us to pick out a toy for Hudson and to bring it home to him.  It was so nice…and we needed that outpouring of love from complete strangers.

We got to see kids really enjoying Sir Purr, the mascot, and to see a few of these GINORMOUS football players trying to do Christmas crafts with the kids…it was hilarious.  One behemoth of a man was trying to stuff tinsel into these tiny glass ornaments.  It was the funniest thing I’d ever seen.  There were kids there in wheelchairs and whatnot and they were having a ball…and that brought me joy.  The players helped us make some ornaments for all 3 boys and even stockings for them too.  To be honest, I can’t remember which players were there.  It didn’t really matter, they were just so kind.  Everyone showed genuine support for us.

And even better, it helped that one of their teammates – Greg Olsen – was going through the same thing as us.  So when the players or staff would ask “Is it the same thing as Greg’s son?” we’d say yes and they would immediately understand.  As we left the room so we could finally go home, the staff and cheerleaders said goodbye and that they’d be praying for us and Nolan.  Wow.  What a cool day that was.  And what a blessing the Carolina Panthers were that day.  I know football players and other professional athletes get a bad rap sometimes, but these guys were all class and meant the world to me that day.  To this day the Panthers remain very involved with Levine Children’s Hospital: they frequently visit kids and bring gifts, and they absolutely model some incredible support for their community.

As we made the drive home to see our other kiddos, we talked excitedly about what just happened: we were blown away by the generosity and kindness of the Carolina Panthers!

Greg Olsen? Greg Olsen!

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So why on earth am I blogging about football in the middle of this blog?  I mean I barely pay attention to football in general, much less the hometown Carolina Panthers.  But one day I was surfing the interwebs at home and came across an article in the Charlotte Observer about Greg Olsen, whose wife was pregnant with twins, and how they found out one of their babies would be born with Hypoplastic Left Heart Syndrome.  WHAT?!  How amazing is it that someone as notable as the tight end for the Panthers would be going through the exact same thing as I was?  Greg’s twins were about 2 months ahead of ours, so I was going to see things unfold in someone else’s life before I had to go through the same experience myself.  I give Greg Olsen and his wife Kara a lot of credit for doing that interview (and several more eventually).  I wouldn’t blame that family one bit for keeping to themselves to try to cope with things, but they faced it head-on, and in the process became a voice for HLHS families across America…just like mine.  Another good thing is that it goes to show that congenital heart defects – and HLHS – can occur in ANYONE.  Rich, poor, athletic, lazy, you name it…it happens, and I promise you for Greg, finding out about an HLHS diagnosis was just as rough as it was for me.

I’d link you directly to the article I read, but the Charlotte Observer no longer has free online viewing of their paper, so here’s another great story and video from NFL.com: http://www.nfl.com/news/story/0ap1000000212281/article/greg-olsen-draws-inspiration-from-infant-sons-difficult-journey