Blog Archives

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.

Advertisements

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!

What is the Norwood Procedure?

NorwoodSano

 

 

The Norwood Procedure is the first surgery for all HLHS babies and usually occurs sometime during the first week of birth.  It is the most complex and highest-risk procedure that an HLHS baby will go through.  Since the heart’s left side does not pump well, the heart is rebuilt so the right side of the heart becomes the main pumping chamber.

The blood vessel leaving the right side of the heart called the pulmonary artery is divided. The far end (the end closest to the lungs) is sewn shut. The near end (the end closest to the heart is sewn into the aorta, which is the large blood vessel leaving the left side of the heart. A patch is sewn in this area to make the “new aorta” or neo-aorta bigger and stronger. Now all the blood leaving the heart goes from the right side of the heart through the pulmonary valve and out to the body through the new aorta.  The wall between the heart’s two upper chambers is removed. This allows red blood coming back from the lungs to flow from the left upper chamber to the right upper chamber. The blood then goes to the right lower chamber and out to the body.

After the Norwood, the right ventricle pumps blood to both the lungs and the body. The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs.  Nolan will be having a variant of this procedure called the Norwood-Sano, which means that a Sano shunt is being utilized.  The Sano Modification of the Norwood involves the placement of a conduit (light blue tube in the picture above) between the pulmonary artery and the right ventricle.

The recovery period for the Norwood procedure averages 3 to 4 weeks, but please don’t be surprised if it’s longer (you’ll see).  I can’t stress enough how serious of a procedure the Norwood is: it’s not a simple 1-hour fix, and it’s only the first of 3 surgeries an HLHS baby will need.

For more info, read: http://www.mottchildren.org/medical-services/hypoplastic-left-heart-syndrome-norwood-operation