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The Best Kind of Handoff

Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around.  This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!

Yes, Nolan is finally getting back into school.  After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all.  I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic.  So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home.  Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.

We decided to apply for an early-childhood preschool program through our local public school system.  Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan.  Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).

I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan.  He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible.  This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro.  They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him.  I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting.  He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on.  WOW.  The next meeting was with the school nurse to go over his needs and care,  The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc.  I was really, really impressed.

So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does.  All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him?  One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion.  First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about.  He had other thoughts.  He looked around and said to my wife, “Well this is disappointing.” LOL This kid!

His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan.  The teacher would also have an assistant in the classroom.  We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME.  ]

So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.  

Yes…in true Nolan fashion, he caught a cold the weekend before the start of school.  I was like:

Bruh really

So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third.  And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!

I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:

NolanSchool1

Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:

NolanSchool2

For me it was such a big, moving moment.  I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life.  And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy.  And I couldn’t be more proud of my superhero.

We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room.  There was playing!  And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.

In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others.  This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight.  This handoff signified that Nolan is beating the odds!

He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there.  He’s also been more of a chatterbox since starting school, which I really like.  And – as always – Nolan is super silly!  We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!


For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be.  Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k.  I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok!  They’re all different in their own awesome ways, so embrace it.  But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied.  Ask questions…LOTS of questions.  And then ask them again if you need to.  Get your child’s doctors involved.  Develop a good IEP plan with your child’s school so that you have all possible bases covered.  Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!

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The Space Between

If you ever meet Nolan and spend more than 15 minutes with him, you’ll know that there are things that he likes, and then there are things he is obsessed with.  Paw Patrol? Oh he likes Paw Patrol…sometimes a little, sometimes a lot.  ABCs? OH. MY. GOD. It’s his favorite thing on the entire planet earth.  He’ll watch alphabet videos on YouTube for hours, his favorite toys are alphabet-related, etc.  He’s crazy about it.  Then came numbers. Of course, we can’t forget his best friend Monkey.  Now there’s something else to add to it: jumping.  This kid loves to jump and it seems like lately that’s what he likes to do: he jumps on each letter of his alphabet mat (because of course), he jumps whenever I’m holding his hand and we’re walking somewhere, and he even jumps when he’s happy about something. Example: I’ll ask Nolan if he wants to watch Paw Patrol – he’ll squat down low and spring up into a jump saying “YES!” He especially loves jumping on trampolines:

NolanTrampolineLook at that kid catching some air!

I love it, though…he’s super cute when he jumps.  We recently found someone nearby who was giving away a 7-foot trampoline so I picked it up and put it in the back yard and it was like Christmas for Nolan.  He can jump on it all day (of course he goes through his alphabet forwards and backwards and counts to 100 while jumping)…and he won’t get out of it without a fight.

Now Nolan isn’t getting some kind of crazy vertical on his jumps, but watching him jump even a little bit off the ground really struck me as symbolic.  Maybe the space between his feet and the ground is only 6 inches or so, but that space speaks to years of hard work at physical and occupational therapy.

I remember the early days of Nolan struggling to sit up on his own, then trying to crawl.  The crawling was so hard: he’d cry and scream and it was so tough to see him that way, especially with all he’d been through.  But eventually he crawled, then he stood, then he walked.  Since then Nolan has progressed to going up and down stairs and, yes, jumping.  Lots and lots of jumping.

And when he jumps, the space between his feet and the ground brings a smile to my face. I like the space between: it’s a good reminder of a little boy who faced major odds and kicked some butt. I think sometimes we (myself included) as heart parents get caught up in the what might happen part of our journey. Will there be a transplant down the road? More surgeries? Will the liver be ok? And we worry ourselves sick.  Sometimes we need to hang out for awhile in the space between.  Or at least admire the space between and what it represents.

For you, the space between might be one less medication, it might be one less surgery, it might be a clean echo or cath, it might be your baby finally talking or walking…it might be a little boy jumping with all the joy in his heart.  Whatever it is, please take time to appreciate the space between.  I’m not saying don’t worry about anything…we’re always going to worry…but instead look for the little symbols of victory in your heart warrior’s life.  They can be so easy to miss, but so powerful once we see them for what they are. For your own sake and your own mental health, give yourself permission to see and celebrate the little wins.  And by all means, celebrate your warrior for his or her victory over that thing that’s trying to hold them back: tell them you’re proud and let them feel free to smile, or even…jump.

How to be a Great Sidekick (A Father’s Day Post)

Hello out there, fellow Heart Dads! As we roll into Father’s Day weekend I didn’t want to let time fly by without dropping a post specifically for all the amazing Heart Dads out there.  You’re the reason for this blog and the reason it stays going!

We all know by now that our Heart Warriors are amazing: brave, courageous, fearless, strong, tough, etc.  They’re nothing short of superheroes:

IMG_5277

I don’t know about you, but Nolan inspires me on the regular with what he’s been able to accomplish in spite of all the challenges he’s had to face.  He’s a generally happy kid (when he’s getting his way), he’s extremely loving (like, face-crushingly loving), and he’s super smart.  But you know what they say: every good superhero needs a good sidekick.

Think about it…Batman had Robin:

Robin

Sherlock Holmes (ok, ok, he’s more protagonist than superhero but whatevs) had Watson:

Watson

And who can’t forget my fav sidekick Chewbacca?

Chewbacca

So then, who plays sidekick to the Heart Warriors? Guess what: it’s YOU, Heart Dad!  So how can you be an epic-level sidekick? Let’s check it out:

Be Brave

Let’s face it – and you know this by now – the Heart Dad’s job is not for the weak or the cowardly.  Is it hard?  Absolutely…really, really hard.  But you know what else is hard? Being on the receiving end of all those surgeries.  I can’t imagine what it’s like for our kiddos…they go through so much and a lot of times the best thing we can do for them is to just summon every ounce of bravery we have and be strong for them.  Tell them it’s going to be ok, tell them you’re there.  Being brave doesn’t mean a lack of fear, it’s facing the fear and pressing forward.  Yes, being brave is hard…but if your kid can do it, so can you: let them be your inspiration.  Being brave doesn’t mean to have a lack of emotion, rather I think it’s more brave to admit that you’re afraid or to admit when things are difficult, so don’t be ashamed!  The bravery you need is right there inside of you!

Be Strong

The famous sidekicks we all know and love are strong in a variety of ways: some are physically strong, some are smart, etc.  The strength I’m talking about here has nothing to do with how much you can bench press.  Rather, I’m talking about being strong in mind: take care of yourself during this long, difficult journey.  Know when you’re struggling.  Practice mindfulness and don’t be afraid to seek help…please take the time to read my post on mental health to find out how to take care of your mind as a heart parent.  You also need to be strong in spirit. I don’t think this is necessarily a religious thing, though I do recognize that faith and spirituality are very important to many of your and is important to being strong in spirit.  But I would also encourage you to be empathetic: put yourself in others’ shoes, or reach out to help those who are where you have already been.  Practice kindness: it’s so impactful to do something for others when you’re going through a tough time yourself.  Be grateful: when times get tough, write down the things you’re grateful for.  Find something you love to do, whether it’s writing, playing music, cooking, fishing, whatever.  Let that feed your spirit.

And, ok, yes…sometimes you do need to be physically strong too:

2015HeartWalk4

Have a Catchphrase

You know which sidekick we’re talking about here, right?  Robin, the boy wonder. Dude was totally known for his catchphrases back in the day: “Holy ______, Batman!” Can you believe there’s an entire wikipedia article entitled “List of Exclamations by Robin”?!  Hilarious stuff, read it here on your own.  My favorite? “Holy unrefillable prescriptions, Batman!” Ah…so relate-able.

But no, I’m not saying you actually have to have a catchphrase (though I don’t discourage it). What I’m saying here is that to be a good sidekick for your superhero, you’ll need to speak up whenever it’s necessary.  Got questions when you’re in the hospital? Ask. Something doesn’t feel/look/seem right? Say something.  Think your kid’s doctor isn’t cutting it? Ask for another one. The voice of a Heart Parent is a powerful one, because while the clinicians are the expert in care, you’re the expert in your own child.  You do have a say.

Do you want to see CHDs eradicated in the future? Speak up – be an advocate?  Don’t know how? Visit the Pediatric Congenital Heart Association to learn how: while you can visit DC and speak with your representatives, calls and emails/letters are just as powerful.  If you’re one of my readers and you live in the U.S., you know that healthcare coverage is a massive issue right now, and no matter what you believe politically, you know that you have a critically-ill child that needs good coverage, not coverage that will be dropped due to a pre-existing condition.  If you want to fight for that, then speak up!  Use your powerful, Heart Dad voice to support your Heart Warrior!

Always Be There

A superhero isn’t gonna drag along a sidekick if they’re a burden.  They keep them on the team because they’re dependable, strong, and always willing to help.  That’s exactly what you need to be.  Yes, the journey is long and tough and it’s filled with bouts of confusion and anger and frustration, but at the end of the day your hero cannot fight this fight alone.  He or she needs their sidekick…they need you.  And they don’t just need you at the hospital or in the doctor’s office…they need you at home.  Get on the floor and play, eat dinner together, give lots and lots of hugs and positive affirmation.  They need you at school: read to/with them, be invested in their education, go to the freakin’ school plays…ALL OF THEM.  They need you out in the world: take them to see the world, do stuff with them, smile and run and laugh, make memories!

At the end of the day, when your Heart Warrior grows up, you’re not going to want them to look at you and say, “You know what Dad, you were a great {insert job title here}”….what I want to hear is, “You know what Dad…you’re always there for me.  You’re a great sidekick.”

Sidekick


I want to wish all the Heart Dads out there a very happy Father’s Day!  I hope you have a really special day with your families, with lots of hugs and love.

Team Nolan T-Shirt Fundraiser

Hey Friends,

This post is totally a shameless plug, but I guess it would be crazy of me not to put it on here.  A few years ago we did a fundraiser where we sold Team Nolan t-shirts: they were great quality and everyone loved them. From time to time people have asked when we would consider doing it again, and we felt now is a good time!

This is what it will look like:

TeamNolanShirt2017

The fundraiser will end on June 20th and all orders will print and ship once the sale ends.  Note: we do need to sell a minimum of 11 shirts in order for the company to print and ship them, so every bit of support helps!

We’ll be using the funds from these shirts to help with the little things that always seem to come up: syringes for medications, supplies for school, clothes/shoes, etc.  They don’t seem like much but as you know, sometimes those things pile up.

Here’s the link for where you can get your shirt: Team Nolan Shirt Fundraiser

As always, we are so thankful for your love and support!  You guys are awesome!

Caring For Your Mental Health

Hi friends: I have something really important that you all really should read – please don’t skip this post.  It’s about your mental health as a Heart Parent.  May is Mental Health Month and I feel like this is a great time to talk about this topic.  I’m not a mental health professional by any stretch, so I had the great opportunity to sit down with a couple social workers at the hospital where Nolan has received his care, and we discussed the topic of mental health in Heart Parents.  I wanted to thank them for making time to chat with me, since the bulk of the material in this post comes from their insights and experience.

MentalHealth

It’s safe to say there’s not enough discussion about this topic in our community.  And since this is a blog from a dad’s perspective, I can say there’s even less conversation about this among men.  But if you really sit down and think about it – if you’re honest with yourself – you know this is something almost all of us will struggle with at some point throughout our journey.  Call it what you will: depression, the blues, the doldrums, feeling down in the dumps, anxiety, stress, anger…we’ve been there.  But a big problem in our society is that there is a stigma around mental health issues.  The perception is if you’re struggling then the problem is surrounding something you did…or you tell yourself that you need to focus on your child and not yourself…or that mental health issues mean you’re crazy or something is wrong with you.  This is not at all the case.  There is nothing wrong with you.  I won’t have all the answers…but I really hope this post starts some good conversation and really helps someone out there.

What We Feel

Do you remember when you received your child’s diagnosis?  Do you remember what it was like when you received the news from a cath that was a total curveball?  That, friends, was a form of grief.  If you’re not familiar with the Kubler-Ross model of grief, there are stages: denial, bargaining, anger, depression, and acceptance.  They don’t always go in that order, some stages last longer than others, and stages will often repeat themselves.  The first time I heard this it made total sense!  For example, we were looking forward (as much as you could) to Nolan’s most recent cath procedure because we were certain they would open up his pulmonary artery and it would lead to better post-Fontan oxygen saturations.  When the procedure was done and the doctor came to see us, he said just what we expected: they stented the left pulmonary artery….and then came the BUT.  Then he told us they found high lung pressures…pulmonary hypertension, and he’d have to go on additional medications and there was the possibility of him having to wear oxygen regularly.  Outwardly I remained calm.  Inside I was a freakin’ volcano of anger.  I was PISSED.  Why?  I didn’t want this, but even worse I didn’t expect this.  This wasn’t the plan.  This wasn’t fair.  Hasn’t my son been through enough?  Didn’t I ask you, God, to look out for him this one time?  What kinda jerk are you?  And on and on…I’m not an angry person at all, but I couldn’t shake that feeling.  I just wanted to grab a chair and throw it.  Then maybe do it again.  Even worse, I was upset with myself for being angry! Luckily on a walk down the hall shortly afterward I ran into the hospital chaplain…he didn’t know I was there that day, but he walked up and just gave me a hug…and it was exactly what I needed, because I sorta unloaded on him and it felt good to talk it out.  From there I was ok with whatever it was going to take to help my son.  In the end, no oxygen necessary, just a new med and regular check ins with the pulmonary hypertension team in the cardiology office.  Have you ever been there, though?  Angry?  Did you feel bad about it afterward?  It’s ok: it’s a natural part of the grief process…do not beat yourself up about it and don’t let someone tell you you’re wrong. Just don’t stay angry 100% of the time!

The loner you care for a child with a CHD, there is a degree of anxiety and depression that show up in some shape or form.  Often the stigma about these things arise after the crisis has subsided.  I remember when Nolan was in the long, 2-month recovery after his Norwood Procedure, I had to return to work because I was running out of PTO days.  At the time I worked at a Hospice…yes, a place caring for dying people.  It was rough.  And it didn’t help that I was a total monster about it, too…God forbid someone else said they were tired.  You don’t know what tired is! Or someone having oxygen saturations in the 80’s…boo hoo.  Yeah, it was bad.  Worse, I felt terrible about it…no, I’m not excusing being rude, what I’m saying is that we can’t expect ourselves to always be perfect when we’re carrying such a heavy burden on our brains.  Instead of saying, “Man, I’m terrible…look at how I’m acting around people,” we can say “Hey I’m struggling, I need to talk to someone.”

Caring for a chronically ill child is very isolating, even if you know other people who have been through it before. Have you ever felt that way? The truth is, guys, Heart Parents often thing you have to be tough, push through, and do it all with very little help.  I know, I’m one of them.  But this is not a matter of strength or willpower…if you’re struggling, you’re not a failure for admitting it!

While it does indeed make you feel vulnerable, admitting that you’re grieving or feeling depressed or anxious is an extremely brave thing to do!  Please, please, please don’t be afraid to be a little vulnerable…you will open yourself to some good, healing conversation.

Survivor Guilt

This one is a really tough one: the internet is a great thing because it keeps us all connected through social media, but sometimes – for me – it can also exacerbate Survivor Guilt.  This happens when you find out another CHD child has passed away, and while you feel really awful for that family and that child, you also struggle with internal questions like why did my child survive and not this one? Did I do something to be so “lucky,” and if so can I do something to lose it? Is my child next?

Guys, this is also normal.  Painful, but normal.  It’s also more complex than just the term “guilt” because what happened isn’t your fault, but you still feel awful about it, particularly because your own child – while struggling – was spared that specific circumstance.  Survivor Guilt triggers the fear of the same thing happening to your child: I know for me, Survivor Guilt is at its worst when things seem to be “fine.”  Then you read about another child losing his or her battle with CHDs and then the reality of CHDs comes roaring back into your life like a hurricane.  Let’s face it, though, the reality is always there…we know that…but it’s in these moments where it really hits us like a ton of bricks.

One of the social workers I spoke with put it perfectly: guilt exists in all parents under the surface and it kicks in the minute your kids are born, whether they’re healthy or not.  And it’s true!  Think about it: I remember vowing that my kids wouldn’t watch TV at a young age and blah blah blah.  Now? I’m quick to throw on a DVD in the car merely to give myself even 15 minutes of mental quiet lol.  You’ve been there, admit it!  And you can easily say, “Man I SO failed there,” or you can just admit it is what it is and continue to work hard towards doing your very best and giving your kiddos an awesome life.

So What Can We Do?

First of all be honest with yourself.  You know yourself better than anyone…so if you’re struggling with anxiety, depression, stress, anger, fear, etc., first admit it to yourself, then look for some help.  You don’t need to shout it from the rooftops like, “HEY EVERYONE! I’M DEPRESSED!”  No, just reach out to a support person who won’t judge you: this could be someone on your child’s medical team (nurse, social worker, physician, etc.)…you can tell them, they’ll help you.  It can also be a fellow heart parent…we’re a great resource for one another!  It can be someone who has a child with a different illness.  Whoever it is, pick one person that you are comfortable being vulnerable with.  Reach out to them and be honest.

Recognize that feeling this way does not make you a failure.  Rather, it is ok to FEEL.  We were not made to be robots…we are human beings with struggles and emotions: don’t let them get the best of you.

Sometimes you do need to see a professional about how you feel, be it a social worker or a therapist.  Again, this is ok…they’re great people who are there to help.  Don’t let the stigma stop you from getting help!  You can start this conversation with a therapist and it’ll be a safe place to discuss and won’t always immediately lead to a diagnosis or medication.  Sometimes you just need to talk or get some good tools to help you through those tough times.

Practice some self-care.  This is really important because while we care for our heart warriors, we can sometimes let ourselves slip.  Self care does not equal selfishness.  Your self care depends on…you: everyone is different and has different things that could meet their needs, particularly while they’re in the hospital with their child.  For some people, switching places with a spouse and going home for a couple hours is a powerful recharging method.  For others it might be taking a walk through the hospital so you’re not very far away.  It’s ok to take a moment here and there for yourself: for me, it was chocolate milk and coffee.  I’d grab a chocolate milk from the nourishment room, then walk to the waiting room to make myself a cup of coffee.  I was only down the hall, but I was away enough to feel like I could breath for a minute, if that makes sense.  I’d sip my coffee and milk and look out the front windows of the hospital at the cars going by…and I’d just zone out.  It was great.  Another good tip is practicing mindfulness.  According to mindful.org, mindfulness is the basic human ability to be fully present, aware of where we are  and what we’re doing.  There’s some great tips on their site, so check it out.  Be there for yourself, too.

Look out for one another.  Heart Dads.  Heart Moms,  Heart Siblings.  Heart Friends.  We are a community and we need to support one another: be sure to acknowledge and appreciate one another!  It just feels so good to know someone is cheering you on, especially when it feels like you’re isolated.  With that said, don’t be an island…seek help from friends, family, your child’s medical team, faith leaders, professionals, etc.  If you want to talk, email me! From time to time I get readers who email me and I love chatting with you and learning about your kids and where you’re from, etc.  I won’t judge you, I just want to help!

Also, I need to acknowledge that sometimes circumstances can seem much too difficult to bear.  If you feel like you’re at the end of the rope or you’re struggling with suicidal thoughts, please contact the National Suicide Prevention Lifeline at 1-800-273-8255 any time of day or visit their site at Suicide Prevention Lifelife for resources and an online chat option.  You’re not alone and people are there to help!  If you’re an international reader (and I’m so thankful for you!) please visit this page for Suicide Prevention resources around the world: IASP.


Guys, this is a tough topic to discuss, but I hope you’ll agree that it is SO important.  Ending the stigma of mental health in the Heart Parent community begins with us.  We owe it to ourselves, and we owe it to our heart warriors to give them the best version of us we can!  I hope that me sharing a few of my stories will help you realize that none of us are perfect and we all struggle throughout this journey…but we can make it through together.

Did this blog entry cover everything?  Of course not.  Please continue to talk to professionals for more information…there’s so much more out there.

*I did wish to pose a question to my readers.  I’ve been thinking of holding a form of online meetup/chat that is an open, judgment-free place for Heart Parents to gather and just talk.  You don’t need to spill your guts…you can just come and listen.  But first I want to know if you’re interested and if it’ll be helpful at all.  I still need to figure out the logistics of it all, but I’m posing the question here first and feel free to answer in the comments: if I hold an online chat where I and other Heart Parents are available to just talk about whatever, do you think it will be helpful and will you consider participating?*

Thanks!

It’s Right There

There are many times throughout this journey where you’re faced with situations, appointments, and dates that seem like they only exist to crush you.  The next cath, the upcoming surgery, the impending birth of your heart baby.  Sometimes when life gets chugging along, you hit those speed bumps where you get frustrated at the unfairness of it all, and you get angry and life starts to feel like it’s swirling.  It’s during those times where we crave some words of comfort and inspiration.  I know that many of you reading this may be going through those moments right now, so I wanted to share something that inspired me, which came from an unlikely source (don’t you just love those?).  So follow along:

Lately my kids have really been into the Disney movie Moana.  We have the DVD and the soundtrack.  I’m not complaining, though: I actually really like the movie and its music; in fact, it’s often stuck in my head.  Not to spoil any part of the movie, but there’s a part towards the end where one of the characters seems like he is performing a Haka dance.  Now you guys might be familiar with the Haka: it became popular over the last few years once videos went viral of the All Blacks rugby team of New Zealand performing the Haka before they begin each match.

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If you haven’t seen it, it’s amazing:

So after seeing it in Moana, I ended up in a good ol’ internet rabbit hole where I started reading about the Haka dance and it’s meaning.  So the Haka is a traditional Maori war dance performed before battle to display a tribe’s strength and intimidation.  It’s an amazing thing to see and, yes, very fierce and intimidating.

So what does this have to do with us?  Stay with me…

My interweb searching lead me to another popular video of the Haka being performed by groomsmen at a wedding.  It turns out the Haka is also performed during special ceremonies and celebrations and to show reverence to others.  The performance was powerful and moved the bride to tears.  What I really wanted to know, though, was what on earth they were saying during the Haka.  I did some digging and it turns out this particular Haka is called Tika Tonu, which was composted by a chief for his son, who was experiencing some difficult times around 1914.  When I read the words, it blew me away:

What is this problem you are carrying?
How long have you been carrying it for?
So son, although it may be difficult for you,
And son, although it seems to be unyielding,
No matter how long you reflect on it,
The answer to the problem
Is here inside you.

WOW.  Just WOW.  I must’ve read this 20 times and it still moves me.  You see, friends, what you’re facing is hard: handing your baby over to a surgery team, fighting with your insurance, scraping up money for another month of medications.  Whatever it is, it’s hard and it may seem like it’s too strong for you and you don’t know where the strength is going to come from…but it’s right there…inside of you.  Through the tears, the sleepless nights you endure.  You don’t give up and I encourage you never to give up!  The rich, the powerful, the connected – they can’t do what you’ve done so far.  You haven’t crumbled under the pressure…and every morning that you wake up and get out of bed is another day that you’re fighting back and you’re winning.

So yes, while it seems unyielding, you are capable of much more than you even know…so keep fighting!


I love how much this spoke to me, and to think it all started with a Disney movie.  I really enjoyed learning a little bit about this beautiful culture.  Here’s the wedding Haka video (with translation) for you to enjoy (look how fierce that bride is when she joins in!):

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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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!

A Reason to Celebrate

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On Saturday, December 10th I woke up to a now-common sound: “Dad….DAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAD!” I hopped up out of bed and opened the door to our room to see little Mr. Nolan there in the hallway, arms held up, saying, “Take me downstairs?”  I bent down and scooped him into my arms and he put his arms around my neck and rested his head on my right shoulder.  Almost immediately Grant came up and I picked him up too.  It was a very special day.  I whispered, “Happy Birthday, big boys!” and I was immediately overwhelmed.  Here they are…my two little boys…and they’re FOUR!  I remember the mad rush to the hospital at 3am, the C-Section, the NICU stay for both babies.  I remember being happy as Grant did good enough to go home after 5 days, and I remember the fear that grew in the pit of my stomach every day as I knew sometime soon I’d have to hand over Nolan for a major heart surgery in an effort to save his life.

In the years since, Nolan has been through so much and continues to endure quite a bit.  He’s one tough little boy.  And Grant has been a fantastic little (by 2 minutes) brother.  Together they’re a wreck: a destructive force of giggles and tackle-hugs.  There was a time where we didn’t know if Nolan would see 4…but here he is: 3 heart surgeries later and still smiling and still fighting.  Each year at their birthday I reflect on what we’ve all endured.  There’s so much to celebrate…so much to be thankful for.  We’re thankful for our little family, for physicians, nurses, friends, family.

Happy birthday to my sweet Nolan and Grant…I can’t wait to celebrate year 5!

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