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2014 Heart Walk & Changes for AHA?

This post is WAY after the fact, but I still wanted to write about it anyway.  In September we got to participate in the American Heart Association Heart Walk.  It was the third one I’ve participated in since we found out Nolan would be born with HLHS and the event holds a special place in my heart.  Nolan was definitely ready to walk:

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And big brother Hudson was supporting his little guy:

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Before the start of the walk we were approached by a woman (I will never remember her name) who asked us about Nolan and said her daughter was born with a single ventricle and was now living in her 20’s.  That was so refreshing and uplifting to hear: I love every glimmer of hope we can get that there is a successful life ahead for our CHD babies.

Then the walk started, and the start of the Heart Walk is – for me – so very emotional.  They start the countdown from 10 and it just brings me back to that time where it was just me, walking for my unborn son, facing a whole lot of unknown ahead.  Now we get to walk with Nolan and it’s all kinds of awesome.  My mom joined us for this walk and I was really proud of Hudson, who walked the entire route.

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This time, though, the walk was just a little different.  I remember 2 years ago there were tons of volunteers along the route: they would cheer us on with pom poms and all that.  There were several water stations.  This year there was one water station and the few volunteers along the route just kinda stood there staring at us.  It was weird and ended up giving the walk a little bit of a “meh” atmosphere.

Most importantly, though, I feel there’s something I need to admit: this year I didn’t do any fundraising for the Heart Walk.  Didn’t even attempt.  I know that sounds pretty messed up, but here’s my reasoning: while the American Heart Association uses CHD all throughout their website and advertising, they only use 1% of the funds they raise towards CHD causes.  ONE…PERCENT.  That’s horrible.   I will continue to do the Heart Walk ever year, if possible, because it will always hold a sentimental value for me…but until this paltry support of CHDs by the AHA continues, I will not fundraise for them.  American Heart Association…you need to do better.

There is, though, a glimmer of hope in this regard.  On October 31st, the Children’s Heart Foundation announced a partnership with the American Heart Association to further CHD research.  According to the press release (http://childrensheartfoundation.org/sites/default/files/AHA%20CHF%20Partnership%20Release.pdf) they will hope to provide $2.5 million in grants over the next 2 years to support CHD research.  Good.

It’s put up or shut up time for you, American Heart Association, and I really appreciate this start.  Keep it up and put your might behind our heart kids…so they can grow up to be thriving adults and one day we will live in a world with no CHDs.

Team Nolan T-Shirt Fundraiser!

Hey friends,

This is a totally shameless plug, but I wanted to let you know of a fundraiser that will be running until June 5th.  We are selling some awesome Team Nolan shirts via Bonfire Funds.

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There are unisex adult t-shirts, children’s t-shirts, long-sleeve shirts, and hoodies available.  Shipping for shirts is only $5, no matter how many you buy.

Being a heart parent is expensive; there are always bills, costs, and needs.  Everything we raise with this fundraiser will help us continue to provide awesome care for Nolan and to help with family costs.  If you could find it in your heart to support us by purchasing a shirt, we would be VERY thankful…and I know I will be excited to know a supporter somewhere around the country is rockin’ some Team Nolan gear!

You can get your shirts here: https://www.bonfirefunds.com/team-nolan-t-shirt-fundraiser

Thank you, readers…you guys are awesome!

Onward

So post-Glenn Procedure, Nolan had a little bit of a hiccup with fluid on his lungs that landed him in the hospital for one week.  But now Nolan was home and we had nothing left to do but move onward: keep up with physical therapy, speech therapy, doctor’s appointments, medications, etc.  It’s still a colossal amount of stuff – especially for my wife – but at least there weren’t any surgeries in the near future and that’s a great, great thing.  Eventually Nolan came off the diuretics he was sent home with, he was no longer taking aspirin either.  In fact, he was on ZERO heart-related meds at all at this point.  He was only on one med for bowel motility and one med for his reflux. 

Nolan moved to physical therapy twice a week, and if my work schedule permitted I went to a couple therapy sessions with him.  I felt so bad for him because he would scream and scream and cry and cry…it broke my heart.  Eventually, though, he started to make some progress and before you know it, he was able to hold himself up for as long as he wanted:

NolanSittingUp

On the day I took this photo, he sat up for 7 minutes straight.  It was a definite cause for excitement!  Our little happy boy was improving!

Unfortunately he was still way behind in the mouth-feeding department, but we still worked on it. 

During this time, we managed to meet and befriend several heart families either in person or online, and it has become a great resource.  I definitely encourage you, as a heart parent, to find other heart parents to connect with: ask them questions, meet their kids, just hang out.  It makes a world of difference.  There are tons of groups on facebook you can connect with, and if you want to find someone local, ask your local heart team to connect you with someone.  That’s what happens with us: we get emails asking if we’d be willing to reach out to families who are about to have an HLHS baby.  We don’t pretend to know EVERYTHING, but we can definitely share our experiences and lend a helpful ear.  Through this we’ve met some really cool people and really nice family.  If we work together and lean on one another, our heart warriors become one heck of an army!

During this time we also realized that having a heart baby is pretty costly.  We got some of those “this is not a bill” statements from the hospital for Nolan’s FIRST hospital stay (the 2-month ordeal) and it was around $750,000.  Yes, you read that right…three-quarters of a million stinkin’ dollars.  It blew my mind and actually made me laugh: I mean, really?  Luckily I am blessed with having insurance through my employer as well as getting medicaid for Nolan.  Still, things aren’t the easiest: my wife couldn’t go back to work since no daycare is gonna take Nolan…nor would I feel comfortable with him in the hands of a daycare while he’s under tube feeds and all that.  And even if she did work, either one of our salaries would go completely to paying daycare for 3 kids.  What a world we live in, right?  And, of course, life happens through all this: things break down, bills pour in…heck, at one point in the summer our oldest broke his collarbone while he was at Vacation Bible School!  SHEESH.   So we realized that we needed to try to do some fundraising to help us out.  Here are my shout-outs to some incredible places:

Kisses from Katie: an absolutely wonderful group from my home state of Connecticut.  They reached out to us via a family friend and were so supportive.  They started this group in honor of their daughter, who was born with HLHS and is now a heart angel.  They want to support families with critically ill children.  They have helped us with bills and even bought us a new dryer when ours was on the fritz.  They are AMAZING and I can never thank them enough. http://www.kissesfromkatie.org/website/publish/home/homeList.php

Give Forward: this is a great website that allows you to develop a fundraising web page.  They handle it all and when your fundraiser is closed, they cut you the check.  Easy as that.  They were great to work with and always available to answer questions quickly via email.  http://www.giveforward.com

Bonfire Funds: this is an awesome company that will design a shirt for you to use as a fundraiser.  They have high-quality shirts and give your supporters the option of buying not just a t-shirt, but a child-size t-shirt, a long-sleeve t-shirt, and a hoodie.  They have lots of options and they ask you lots of questions about your cause so they can design you a really cool shirt.  I was amazed that they actually used a design I made and just added a few finishing touches.  In the end, the shirt looked awesome and we sold about 60 of them online! http://www.bonfirefunds.com

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