Monthly Archives: January 2017

The 3forCHD Project

You guys, I am super excited about this post because I get to announce a really awesome opportunity to spread CHD Awareness.  So about 3 years ago I did something called the 32for32 project, where I did 32 acts of kindness for my 32nd birthday in order to raise CHD Awareness.  The following year I was able to do some lobbying for CHD research in Washington, DC, which was amazing.  Last year I did 10 acts of kindness in 10 locations in the area and when you looked at them on a map it made the shape of a heart.  Each of those projects gave me a really great chance to teach people about CHDs while doing some great things for people in need in my community.  Over time I’m heard from people who were inspired by this and wanted to be a part of it somehow…well here is your chance!

I’m happy to announce the 3forCHD project!

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During this year’s CHD Awareness Week, February 7-14, I want to unite heart families and friends all around the world and encourage them to do three acts of kindness in an effort to educate people about congenital heart defects and hopefully play a part in finding a cure.

Three.  That’s it.

Three things: that can be feeding the homeless, volunteering at a nonprofit, bringing treats back to the staff at the children’s hospital where your heart warrior got their care. It can be anything!  It doesn’t matter how much money you have, it doesn’t matter where you live.  All I’m asking is for all of you to join me during that week to make a real difference in people’s lives.  Imagine if 100 of us do this: that’s 300 acts of kindness…300 real, tangible ways for us to help people in need!  That’s AMAZING!

So I need you to step up and do this with me, I need you to be excited about this with me: I want you to share this with your friends and family.  Invite them along: maybe partner with other families where you live and do something awesome together.  Whatever it is, I know that together we will make a big impact!

I’ve made a Facebook event page where you can “join” the event (keep in mind you’ll be doing all these activities right where you live) and post pictures, videos, and stories of your acts of kindness using the hashtag #3forCHD.  You can use the same hashtag to share throughout all of social media leading up to and during the event.  Let’s take this thing worldwide!

I’ve also made up this handout for you to use:

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Print some out and give them out when you do your 3 acts of kindness.  Once Feb 7th hits, I will add a “sticky” post to the top of my blog that will welcome anyone who has received this handout and is brave enough to come here to this blog.  It’ll have more information about CHDs and what they can do to continue being involved.  It’ll remain there for a couple weeks after the event, too.

Will this require some money? Maybe.  Will this require your time? Yes.  But what we need – most of all – is your heart.  I believe that if we give back, with all our hearts, we will create a movement where people know about CHDs and will help us make enough noise to increase funding for research and one day find the cure.

So I have just one more question for you…

WHO’S WITH ME?

 

 

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Appreciating the Sacrifice

Lately the weather here in North Carolina has been – for lack of a better word – possessed.  One weekend it’s snowing and the van is encased in ice, and then a few days later it’s 70 degrees.  Go figure.  I’m not complaining, though, I appreciate some really mild weather this time of year; after all, I grew up in Connecticut, where the snow can get waist-deep, so this is much appreciated.  Anyways, we were recently taking advantage of a fairly nice evening outside with our fire pit.  It was a little cool outside, so we had some light jackets on and made some hot cocoa and just hung out before putting the kids to bed.  Grant loves the fire pit, referring to it as the “fire camp,” so he was excited to hear we were starting the fire.  Of course, our kids’ attention span lasted a whole 42.7 seconds and they were off playing with toys in the back yard, which is just fine.  At one point, Nolan was playing with a metal Tonka dump truck and was piling all sorts of stuff into the back: a football, a small skateboard, a bowling pin, a bucket.  And it was cute seeing him lost in the world of play.  My wife commented how “it’s nice to see him just doing little boy stuff.” And it’s true: you’ve been there too – where you look at your Heart Kid doing even the most “normal” things and you just appreciate it, because they’ve been through so very much.

As a dad, I live for all the moments and all the memories with my kids. Walking, first words, first days of school, piling on top of their poor old man:

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School performances, Donuts with Dads, parent teacher conferences, etc.  I live for it and I will do everything possible not to miss those moments.  I’m so thankful for that chance.

Lately I’ve been really thinking about those types of moments and how fortunate I am to experience them.  My job is really flexible in letting me attend school stuff or appointments and it means a lot to me and the kids, too.  Even time at the park is a joy:

flswingsBut as a Heart Dad I really want to acknowledge that there’s a tremendous amount of sacrifice that goes into the opportunity to make those moments happen.

Every single day – rain or shine, snow or sleet – there are a group of people who leave their homes while it’s still dark, or leave home while most people are just getting home from work, and they park their cars, ride an elevator, badge in on a time clock, wash their hands, and get to work. Some of them walk into the room where I’ve sat, sleepless and helpless with my son on a vent, and say, “Hi, I’ll be your son’s nurse today.” Some of them load up a cart of cleaning supplies and work hard to keep things clean and avoid the spread of germs. Some lug a ladder down the hall to replace a burned-out light bulb so a nurse can see better when he or she is charting.  Some fire up the grill in the cafeteria to sling burgers and chicken sandwiches for hungry families and staff.  Some scrub in for a grueling surgery in an effort to safe a kid’s life.  Some land a helicopter on the roof, carrying a life that needs desperate help from the best team available.  These are the hospital workers…and they sacrifice so much for us.

I really want to use this post to acknowledge all the hospital workers – clinicians and non-clinicians – who give so much so that we can enjoy so much.  You have lives, you have families, and you have memories you want to make, too.  I just want you all to know that it’s not lost on me that sometimes you sacrifice a school performance, a bedtime story, a goodnight kiss, a good push on the swings…all for my son, and to give us the chance to enjoy him.  I know you put up with a lot: the demands, the long hours, the demands, the hours without peeing, the hours without eating, the sad stories.  I see you, and I thank you.  It’s your job, but I know your job comes with a steep price: you could do anything else in this world but you choose what you do, and I could never enjoy the memories I have without you.

So hospital workers – wherever you are, whatever you do – just know that you are loved, you are appreciated, and your sacrifices truly do pave the way for magical moments in a Heart Family’s life.  Your work is not in vain, your work is priceless.

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The life of a Heart Parent is a rather insane one.  I know you know this: isn’t it amazing how the most run-of-the-mill things become colossal when your heart kid is involved?  Take this holiday season, for example.

We made the trek to Florida for a good 10 days to spend with my wife’s family.  All the kids did surprisingly well on the drive (which we stretched over 2 days) and enjoyed their time with their grandparents, cousins, aunts, and uncles.  The bulk of the time was spent in a condo right on the beach in Clearwater…it was pretty sweet:combo

The day after Christmas the whole family took a trip to Busch Gardens, and we weren’t completely sure what to expect.  Let’s face it: the twins are still shrimps so I wasn’t sure how many rides they could get on.  Plus it was really hot, which Nolan struggles with…and if Nolan isn’t happy…well…no one is, if you know what I mean.  But Busch Gardens had a decent collection of rides in their Sesame Street-themed area and none of them provided any concern for the kids.  I mean look how happy Nolan is here:

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The big deal came two days later when our little family had the opportunity to go to LegoLand.  Before I get into the story I wanted to give a little background about how we got to go to LegoLand.  Merlin’s Magic Wand is a wonderful charity that gifts fun outings to kids with severe illnesses and disadvantages.  They were gracious enough to provide our family of 5 with tickets to LegoLand and we gave it to the kids as a family gift on Christmas Day.  They were super excited to get to go on more rides and I was excited at the prospect of a theme park that’s made for smaller kiddos.

Now I love amusement parks.  Always have.  I love roller coasters and all sorts of fun rides, so I was really looking forward to this special day with the family, and Nolan was definitely excited too:

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They gave us a little pass to help us get on the rides quicker, they measured Nolan and gave him a wrist band so he wouldn’t have to be measured at every ride (he’s finally 36″! YAY!), and every single person who we ran into there was so kind to all of us.  We got on some rides like the train and the merry go round and even this Lego Chima ride that got us SOAKED.  There were smiles all around…this was gonna be an awesome day.

But then Nolan said it: “I wanna go on a roller coaster.”  He had asked this several times already and we were able to successfully deflect it and re-direct, but this time he was insistent.  The problem?  He was too small for any of the roller coasters, not to mention I had no idea if a coaster was truly a good idea for him, if you know what I mean.  It says it there when you get to the line: not for people with heart trouble.  This was looking to get real frustrating, real fast.

But kudos to my wife, who is ever so awesome: she saw there was a ride nearby that could potentially serve as a “coaster” of sorts for Nolan.  It was called Merlin’s Challenge:

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You’ve been on something like it, I’m sure.  You’re in a car, it spins round and round and goes up and down.  Nothing too fancy, but the cars looked like trains and to Nolan it was a roller coaster…and I wasn’t gonna correct him.  And the height requirement? 36 inches!  BAM!  So we waited in line and Nolan was super excited as we boarded.  Hudson was big enough to ride in a car by himself.  My wife went with Grant and I went with Nolan.  I sat next to him asking if he was ready and excited.  He was practically jumping up and down with excitement.  Again…this was gonna be awesome.  But then, as the ride operator pushed our lap bar down into place, my freakout started.

Suddenly, in an instant, my mind went racing: this is the fastest, most insense ride he’s ever been on. Don’t let his chest hit the bar. Don’t let his head hit the bar. Don’t let his head hit the back. Watch him. Watch him. What if his lips turn blue? What if his heart rate goes too fast? How will I know? Will I know? How can I stop this ride? Do I flag the guy down? Do I yell “STOP!” Do I yell “EMERGENCY!” How fast can a medic get here? What’s the closest hospital?  I was like:

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And then the ride started to move and I was like OHCRAPOHCRAPOHCRAPOHCRAP!  It was the most scared to death I’ve been in a long, long time.  No joke guys, I was freaking out.  But then I heard it…the high-pitched, squealing, almost wookie-like laugh of the strongest little 4 year old on earth sitting next to me.  I looked down and Nolan was smiling and laughing and looked like everything was a-ok.  Only then I was able to relax.  It’s blurry because we were going fast, but just look at this face:

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I think the ride maybe lasted 2 minutes…but it was 2 minutes of pure joy.  Preceded by holy terror, of course…but pure joy nonetheless.  It was a moment I’ll cherish forever because after all the surgeries, all the therapies, all the tube feeds, all the meds, and all the concerns about what he might not be able to do, we had a moment where he got to spin, laugh, have fun, and be just an awesome 4 year old boy.  It was epic and it meant everything. 

This life we lead is a marathon and there will be many freak-out moments along the way, but man sometimes these kids of ours will just surprise us and lead us into a place of true joy.

Our family really wants to thank Merlin’s Magic Wand for their absolute kind generosity to our family and families like ours.  Your helped us make memories that otherwise would not have happened.  And to the staff at LegoLand in Florida: you guys are amazingly kind…keep up the great work!

 

A Lot of Miles and a Lot of Trust

As you know by this point, on top of having a CHD, Nolan has also struggled with feeding issues his whole life.  Aside from slowly taking a couple bottles from me when he was a couple days old in the NICU, he’s never really eaten by mouth.  He had a feeding tube placed before we brought him home for the first time and it’s been a life of tube feeds and feeding therapy for the little man.  Progress on eating has really been up and down: we successfully moved him from Pediasure to using blended feeds and eventually managed to get Real Food Blends covered by our insurance, which took quite a bit of work.  All the while he wasn’t really eating at all.  His morning routine, in fact, involved some meds, some fluids, vitamins, and some Benecalorie, which is a high-calorie product that we mix with water or juice:

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During Nolan’s stint on the rehab unit this summer, one of his speech therapists – Grace – gave us a few “local” recommendations for feeding programs.  All of them were hours away, which made for a tough choice.  In the end, we decided to try the feeding program at the University of North Carolina Medical Center because they had some experience working with heart kids.  Once all the referrals were made we had our first appointment for early in the morning in October.  Until this point, all of Nolan’s appointments are around 30 minutes away.  Now we were facing this:

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And not only did we face a nearly 3-hour drive, I had to take the day off work and we had to find people to drop off our other kids at school and pick them up.  This was quite an undertaking.  We left super early and made the drive…and barely made it there because of traffic.  UNC Medical Center is on a really big campus, right next to the University.  They have a massive parking deck with a $10 daily maximum and no validation in the hospital…BOO.  It’s kinda weird having to go to a different facility after being so used to Levine Children’s Hospital and we didn’t know what to expect.  We found the check-in relatively easily and went through all the initial paperwork and whatnot.  Then we were sent to a different waiting room and were barely there before Nolan was called back.  They got the usual weight/height/sats that everyone measures and then we were taken back to a room.

What’s unique about this program is that it’s run by a team approach.  We had a NP from GI come in along with a nutritionist and the feeding specialist.  All at the same time.  Yes, you read that correctly.  Working across disciplines: what a concept!  The initial appointment was really, really long: they had a ton of questions, naturally, and wanted a good feel for Nolan’s needs.  While they did give us some dry spoon exercises to do with Nolan at home, their first major concern was Nolan’s vomiting.  Nolan has always had issues with throwing up ever since he came home from the Norwood.  We talked to everyone we could about it and either no one seemed too concerned or no one could do anything about it.  And absolutely no one would communicate across disciplines about it.  God forbid.  So this was different.  They said the dose of meds he was on for his tummy was so low it wasn’t going to do anything so they prescribed him a different med – Nexium – that he would take once a day before feeding.  Then they also recommended starting him on a different food blend called Nourish:

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It’s a plant-based formula that they felt better met his nutrient needs (Real Food Blends apparently was short on some things, hence our need to add vitamins).  Plus they said the addition of turmeric in the blend has shown to help kids with their reflux issues.  I was skeptical: I just wanted to jump to the feeding and get it done as quickly as possible so we can stop driving so much.  But hey, I don’t get to make that choice, right?  For now, though, hey held off on the Nourish and just had us work with the dry spoon and new meds on Nolan and meanwhile they would communicate with Nolan’s current speech therapist to see if she was on-board with UNC’s recommended plan (she was, thank God).

We went back one month later and Nolan was showing a little bit of improvement with the vomiting and he did a good job taking the dry spoon.  So the next step was to start him on Nourish.  They made sure our DME provider carried it (great job on their part!) and told us they’d email the recommendations for switching over.  What they didn’t tell us was…dun dun dun…we’d be bringing back to bleeping feeding pump.  And when I say bleeping I mean literally bleeping.

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This really made me pissed off because we had gone away from the previous Kangaroo pump and were giving his feed bolus by hand.  Now we were back to this nonsense and we they wanted us to put him on continuous overnight feeds for 10 hours.  TEN HOURS! Did they know how much this kid rolls around in his sleep?

We did try, though: we hooked him up and immediately this godforsaken machine would beep and beep and beep with some kind of error: No Flow In, No Flow Out, blah blah blah.  And I hated it.  Do you remember the movie Demolition Man?  Where Sylvester Stallone kept cursing at that citation machine?

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That was pretty much me.

So we fired off an email to the team and pleaded our case for not having the overnight feeds, at least.  They responded that it was meant to help create a hunger sensation that would help with feeding and to trust them for awhile.

So there it was…trust.  It’s hard to do, and especially hard when the team is hours away and doing something that inconveniences you.  But that’s just what it is, an inconvenience for me…ultimately it’s meant to help Nolan, so we sucked it up and went with it.

Well I gotta tell you: between the meds and the feed blend, Nolan rarely vomits now.  And even when it seems like he’s going to (usually when he’s upset), I’ve noticed he’s able to control himself and not do it.  It’s amazing!  We’ve also graduated from dry spoon practice to dipping the spoon in juice and Nolan has been doing a great job.  Yesterday he sat down to feed at least 3 times and took at least 20 bites each time.  Soon we’ll graduate to dipping the spoon in a little bit of puree.  Baby steps.  This is going to be a long process but I’m seeing some progress in our little man…and I’m starting to trust his feeding team more and more.  It’s amazing what can happen when disciplines work together!  So until now we’ll keep up the work and won’t head back to UNC until February, but it’s promising! As long as he keeps eating, we’ll keep driving.  Whatever it takes.  Go, Nolan, Go!