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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.

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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:

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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.

Guest Blogs for Father’s Day Weekend

This is the 4th entry in my series on Fatherhood this month.  Enjoy!

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Hey everyone!  Father’s Day is almost here!  I’ve had the great fortune of having two really wonderful groups reach out to me regarding guest blogging on their sites and I’ve really enjoyed the experience so far.  I’ve featured both of these sites before and both have published a post of mine in time for Father’s Day and I wanted to share them with you:

The Mighty

The Mighty reached out to me again and wanted to publish one of my previously-written blogs from this site.  Of course I agreed, hoping it would be able to provide some help to people.  I encourage you to take the time and read it again and learn about some self-care techniques…and then share, of course!  The article is titled “To the Stressed Dad Worrying About His Child’s Health”:

http://themighty.com/2015/06/to-the-stressed-dad-worried-about-his-childs-health1/

Pediatric Congenital Heart Association

I’ve had a blast working with PCHA as a blogger and an advocate for CHD research.  They work so hard to push for more research and a better future for our kids and I really encourage you to get involved.  Recently they published a guest blog post of mine that has shown to be extremely popular so far and I wanted to share it with you.  It’s titled “5 Things You Shouldn’t Say to a Heart Dad”:

http://conqueringchd.org/5-things-you-shouldnt-say-to-a-heart-dad/

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Have a great Father’s Day!

The HLHS Dad on The Mighty!

This is the third entry in my series on Fatherhood this month.  Enjoy!

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I’ve had the great honor of having a post I wrote featured on the website The Mighty (themighty.com).  For those of you who are unfamiliar with the site, it’s a really fantastic website where powerful stories are shared about/by individuals or families facing disabilities, disorders, or chronic health conditions.  It’s updated very regularly and I can’t say enough about how amazing these stories are.  There are even several stories on there about CHDs, even before this knucklehead showed up.

To stick with the theme of Fatherhood this month, I wrote about how Nolan’s battle with HLHS has made me a better man.  I would be really thankful if you took a moment to read it here (and share!):

http://themighty.com/2015/06/4-ways-my-sons-medical-condition-has-made-me-a-better-man/

As a man, as a husband, and as a father, I will forever be a work in progress…so by no means does this article mean I have it all figured out.  Far from it.  In fact, I would love it if a couple years down the line I would look back at this and think about how far I’ve come even since then.  It’s a marathon, friends…let’s no forget it.  But we’re running together and the goal of it is for all of us to win it…together.

Hey You, Don’t Forget About You

I’ve been where you are…the glazed look in your eyes, the nearly zombie-like foot shuffle, the Lord-knows-how-old crust on your t-shirt.  You’re the dad who is on day 4 in the hospital after your child’s most recent heart surgery.  I see you standing in the cafeteria, meal ticket in hand thinking, “If I eat another chicken salad sub, I’m gonna lose my freakin’ mind.”  Dude, I’ve been you.  Now that I work at a hospital, I see you guys all the time…I call these parents “ghosts upon the earth,” since you get to this crazy place where you exist but you kinda don’t…you’re just floating through the motions until you get to safely take your child home and it’s like someone gave your body back to you at the front door.  Well guys, this post is for you…whether you’re shuffling through the hospital or doing it at home.  I know this life is a challenging one but we have to remember to take care of ourselves!  Obviously our little heart warriors get a lot of attention…they need that attention.  There’s meds to be given, tube feeds to administer, appointments to attend, and futures to fret over.  The reality, though, is we’re killing ourselves with stress.

Stress

There’s been a big shift in healthcare towards more holistic styles of healing – or integrative therapies, as they’re sometimes called.  But before you write me off as some kind of hippie, please hear me out.  Mainstream healthcare is slowly getting on board with the idea that some of these more non-traditional therapies can actually be very helpful in the big picture.  To be honest with you, they weren’t anything I ever put much thought to until about the last year or so.  My job has exposed me to several of these therapies and I have to say they’re a great thing for the healthcare system and for us as heart parents.  So here’s a few:

Healing Touch

Is it massage?  Is it chiropractics?  Is it weird?  Nah.  To be honest with you, I am far from being an expert in healing touch because I don’t completely understand it.

HealingTouch

 

According to the Healing Touch Program website, “Healing Touch is an energy therapy in which practitioners consciously use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health.  Healing Touch is a biofield (magnetic field around the body) therapy that is an energy-based approach to health and healing.”

Now before you get all like “That’s some voodoo, bruh!”  Hear me out.  I’ve tried healing touch twice and whether or not the results were all in my head, I have to say it worked splendidly.  We recently had some healing touch practitioners at work and I sat down for a 10-minute “centering exercise” as they called it.  Basically I saw in a chair and the practitioner put her hands gently on my head, neck, and shoulders.  All the while I was encouraged to breathe and listen to some soothing sounds on a radio.  After 10 minutes I felt completely relaxed, completely focused, and very rested.  Still can’t explain it, but I felt like a million bucks.

The good thing is a lot of hospital employees are going through classes to become healing touch practitioners, so ask around and see if someone can come to you and even do 10 minutes of healing touch.  You will feel the stress melt away, I promise it’s worth the time.  It’s non-invasive, you don’t have to take any meds, so the only thing you have to lose is a little time.

Aromatherapy

For a lot of people, “aromatherapy” means heading down to Bath & Body Works and buying a lotion that smells like a beach.  Not true.  I bet if you spent 45 seconds on your facebook timeline, you’ll find someone who is all about their essential oils.  It’s like the next big thing.  The reality, however, is that aromatherapy is nothing new.

aromatherapy

Think about it, way back in the day before people were able to pop a tylenol or apply Head-On directly to the forehead, people used a lot of different ways to heal using what was readily available to them.  Often this was plants and oils.  Fast-forward to today and those same oils are becoming very popular as people seek ways to heal without medicine or invasive procedures.

I learned about aromatherapy about a year ago at an integrative therapy educational session at work and thought it was pretty awesome.  It’s amazing how you can just basically put a cotton ball in a little cup, add a few drops of essential oils to it, put it next to you on your desk and really get your heal on.  For example: stress got you feeling nauseated?  Use some ginger essential oil, which settles the digestive system and stimulates appetite.  Sound like bunk?  One day I was feeling extremely sick to my stomach at work and needed to stick through it to work a particular event.  I sat at my desk with some ginger essential oil and felt better in no time.  It was pretty awesome.

There’s so many great uses for aromatherapy and I encourage you to research them more on your own.  Look into things like Bergamot, which is an antidepressant, or Lavender, which – when mixed with vanilla – can help reduce fear and anxiety prior to medical procedures…hint hint.

Just…Breathe

When I was in college I took a lot of psychology classes and I’ll never forget one professor who taught us about breathing exercises to reduce stress.  She said “If you’re waiting on that big job interview one day and you’re freaking out, just close your eyes, take a deep breath through your nose and release slowly through your mouth.”  I’ll never forget it because it works.  Taking a few moments to focus on your breathing can really help relax you and relieve some stress.

Breathing

An exercise that I found works great is to breathe in slowly through your nose, counting to 4.  Then hold it for 2 or 3 seconds and release slowly through your mouth for another count of 4.  If you close your eyes and do this a couple times, you’ll be amazed how relaxed you can feel.  The best thing is you can do breathing exercises wherever you are: in your office, at home, at the hospital, in the car (don’t close your eyes for this one).  And again, no meds involved in helping you feel better.

There’s lots of great breathing exercises out there in a wide range of difficulties.  If you want to take it to the next level, check out this list: http://healthland.time.com/2012/10/08/6-breathing-exercises-to-relax-in-10-minutes-or-less/

Rock it Out

Anyone who knows me knows that I am pretty obsessed with music.  Gotta have music when I drive, sometimes I’ll put Pandora on and let the kids dance around, I love concerts.  Music is a powerful thing.

MusicTherapy

Think about it: you listen to that one song that reminds you of a person or place in time and it’s like it brings you right back.  There is music that can bring you happy thoughts and memories and there is music that can calm…I know everyone has that song or songs that can calm them down.

More recently a lot of work has been going into studying the effect of music on the human brain.  I’m sure by now we’ve all seen the video of the old man in a nursing home who can’t even remember his own daughter, but when they play his favorite music, he sings and becomes far more responsive than he was.  Music has been shown to unlock memories that sometimes we think have been lost, whether that’s through time or illness.

So I encourage you to take that time and let music set you free.  If you’re going for a hospital stay, pack some music with you on an mp3 player.  If you can’t do that, step away for a few minutes, lock yourself in your car, and listen to some music.  It’ll be like a nice re-set for your mind.

Get a Hobby Already

Work work appointments work appointments clean up barf work work appointments laundry dishes cooking work work clean poop work.  That’s life, right?  We run ourselves into the ground doing things that – while important – are depleting our energy and we don’t make time for ourselves.  Get…a…hobby.  It’s not a selfish thing to do.  It can be anything: play basketball, learn an instrument, collect stamps, learn to breakdance, master the unicycle.  Whatever, just do it.  If you know me, you also know that my addiction to coffee is right up there with my obsession with music.  For the last few months I’ve begun roasting my own coffee beans at home using a popcorn popper.  I order the beans raw from a supplier, and when I want some coffee, I take my popcorn popper outside, roast the beans, and the next morning I can grind up some super-fresh coffee.  You just can’t get it any fresher!  And it makes a world of difference…plus the roasting process makes your clothes smell AMAZING.  I really enjoy the process of roasting coffee…it just makes me very happy, and when I drink a fresh cup and it tastes good, I feel very accomplished.  And as weird as it sounds, I really enjoy just watching those beans spinning around in the popper, turning from green to brown.  It’s a relaxing sight.

Coffee Roasting

A hobby is a much better relaxing activity than sitting around binge-watching shows on Netflix (though that can be fun too) because it stimulates a level of creativity and provides a nice level of self-esteem.  And I don’t know about you, but that sounds like a really great thing.

But Wait, There’s More

I could go on and on with all of these self-care ideas, but I don’t want to make you cross-eyed: so I encourage you to do some more research on the interwebs about things to help you relieve stress and relax.  Look into things like mindfulness and guided imagery.  Maybe acupuncture is for you.  I know the life of a heart parent, heck ANY parent, is a stressful one.  I’m not saying you shouldn’t be concerned about things.  But for right now, you are your child’s best advocate and their companion along this long journey.  The reality is, if you don’t stop and take care of yourself, you’re going to break down, you’re going to get sick, or worse.  Don’t let your heart warrior go at it alone.  Give yourself all the best shot of success by taking time out for you.

 

 

 

Attention Heart Dads: You are Mighty

Hey you…Heart Dads.  Yeah, I’m talking to you.  Ever feel like you’re the forgotten one sometimes?  Hey it’s ok, it happens…our kiddos are the stars (and rightly so), Heart Moms are Super-Moms (and rightly so) and Heart Dads?  Well…sometimes we’re viewed as just dads.  Fasten your seat belts, homies, because have I got news for you: Heart Dads are Super-Dads too…and Heart Dads are capable of mighty things!

Fatherhood1

Study upon study shows the positive impact a good father has on a child’s life.  In fact, the other day on the radio I heard about a study that showed when dads are involved in a child’s education, the child is much more successful.  File that under “no duh,” but still…we can have a tremendous impact and therefore we have a tremendous responsibility.  And to add to the mix, we have a child with a severe congenital heart defect.  Face it: the minute your heart warrior was born, your life changed forever.  This is a turning point, though…so how do we as Heart Dads avoid looking at our situation as a burden and instead see it as a blessing?  Here’s my thoughts:

1) Get Some Perspective.
Being a parent to a Heart Warrior is hard work, I’ve said it a billion times on this blog and I’ll say it over and over again…and by now you know this to be true in your own life.  But has being a Heart Dad become pure drudgery for you?  Or does it carry purpose?  Maybe you feel like you’re fighting an uphill battle: well don’t give up.  Look at how far you’ve gone.  Sometimes it’s easy for me to get frustrated when it takes Nolan weeks/months to gain even a pound…but then I have to force myself to look back at how tiny he was before his first surgery.  Or sometimes I get frustrated when Nolan only eats two containers of baby food in a day instead of 3 or 4.  But then I need to get perspective and remember that a month or so ago he wasn’t eating anything by mouth.  When I look at it that way, we’re on the right track.  Heart Dads: every hard-fought step is a step in the right direction for your child.  Are you mad because the responsibilities of being a Heart Dad take you away from a game or two or some time out with the homies?  It’s not gonna kill you, man.  Put it this way: every minute you spend fighting along side your heart child is a minute you help them in the fight for their life.  That sounds heavy, but it’s true, and it makes poker night look weak, doesn’t it?  When you work on finding a balance, you’ll see that it’s been there all along.

2) Be a Fighter Alongside Your Fighter
The struggle is real, guys…you know it and I know it.  So what are you gonna do about it?  You see your child struggle to eat/sleep/breathe/live and you do all you can to help him or her through it.  Take it a step further and fight for your heart kid and other heart kids.  Don’t leave that fight up to others or just the Heart Moms.  They need our help too!  Be involved, be a voice, advocate for your kids, advocate for more research!  Maybe you share some facts on social media, maybe you share some information in your community, maybe you too start a blog, or maybe you start an organization that supports heart kids.  Whatever it is, speak out and speak up.  It’s not enough to merely provide or to be there…that stuff is awesome, but your experiences as a heart parent are so powerful and can make such a big difference.  Be your child’s voice…fight when they can’t fight…be the difference.  There are so many strides to be made in the world of Congenital Heart Defects and we’re just scratching the surface…it takes heart families, together, to make this thing happen.  And with the help of some really fired-up Heart Dads, we can really make a difference!

3) Do Good to Others
I am a firm believer that helping others in need will help you when you’re struggling and feeling down.  It kinda ties into that whole perspective thing.  Somewhere out there is a family struggling to stay warm, somewhere out there is a child who is hungry, somewhere out there is a family who lost their heart child…these things really make me think differently about my situation.  At least my family has a home and food and access to good medical care.  At least I get to enjoy my son’s smile day after day after day.  So go out and make a difference: volunteer at a shelter, drop off some items from a charity’s wish list, give to a charity that means a lot to you, write someone a nice note to brighten their day.  If you don’t have the money you can always give of yourself and your time.  You can even make an effort to reach out to other Heart Dads and offer support.  Imagine that!  In February I did 32 acts of kindness for my 32nd birthday, not to bring attention to myself, but rather to bring attention to CHDs AND to do as much as I can to help others in need…and the need is great.  I had a blast doing it and can’t wait to do it again.  Moreover, I want what I do for others to serve as an example for my three sons: that life is about what you do for others.  It’s tremendously uplifting to help others because often it’s a sacrifice to do so.

4) Keep an Open Mind
What a wild journey it’s been to be a Heart Dad.  It’s opened so many opportunities to meet some awesome people, have great discussions, and it even helps me be successful at work, believe it or not.  Heck, I NEVER thought I would write a blog for Heart Dads…never in a million years.  Be open to where the heart journey will take you…you can do some amazing things.  I wanted to share a story I read just today about a dad named John Holter.  He wasn’t a heart dad, but had a son born with a severe form of spina bifida and he contracted meningitis shortly after birth.  This caused a rapid expansion in his head, which could only be relieved by pulling out excess fluid via syringe in the soft spot on his head.   As he got older a shunt was implanted to drain fluids, but it was often faulty due to its valve.  John, who had no college degree and was a tool-maker at a lock company, saw the problem and set to a little bit of tinkering.  He eventually developed a type of silicone valve that would work better than the one used for his son’s shunt.  While his son unfortunately did not survive, John Holter’s initiative, drive, and ultimately his invention would go on to help MILLIONS around the world since the 1950s.   I was floored by that story…here was a dad who wanted more, a dad who wanted better.  Sure, on paper he didn’t have the medical qualifications, but he tried anyway.  Dads, keep an open mind because you won’t know where this journey will take you, but I’m willing to bet it will continue to change your life for the better!

I could go on and on, but I’ll end it there.  The truth is that Heart Dads could have a really tremendous impact on our world.  We can be mighty!  We are mighty!  This journey has its ups and downs and frustrations, and it’s easy to be caught up.  But the truth is, I force myself to remember that every time I lay Nolan down to sleep it signals another day I was blessed to have him in my life.  And with that in mind, I refuse to just coast through this Heart Dad life…I didn’t choose it, it chose me.  So I’m gonna give it – and Nolan – my best.  After all, why wouldn’t I want to fight to get more of these hugs?

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Stay strong, Heart Dads!

 

The Shock

Once we got word that Nolan’s surgery went well, all we had to do was wait for an ok to go up and see him.  It seemed to take forever, but having our friend Marc there to keep us company helped pass the time.  Finally someone came to get us and brought us up to the CVICU to his room.  And what I saw shocked me:

NolanBedPostSurgery

 

My little boy.  My 4 pound baby was hooked up to so many machines.  I was shocked.  Completely numb.  I don’t even think I said anything, I just couldn’t.  In my mind I prayed and prayed, then prayed some more.  Meanwhile the room was buzzing with nurses moving back and forth rapidly, giving meds, checking machines, etc.  It was nuts.  I couldn’t believe how swollen Nolan was…it didn’t even look like him.  And (WARNING: PHOTO AHEAD), as Dr. Maxey noted, his chest was still open and I could see his little heart beating:

NoliOpenChest

 

It was all so scary.  I vaguely remember speaking to one of the nurses, but most of it was some Charlie Brown-style wah wah wah.  Something about them doing an x-ray or an echocardiogram to see how his heart function is.  I was just in complete shock.  I mean it was kinda freaky seeing his chest open like that…ok really freaky, plus I was just kind of amazed at our medical technology and skill: they could perform surgery on a heart the size of a quarter AND they have all these machines that keep him healthy through recovery.  Man, I couldn’t begin to list all the meds he was in: pain stuff, sedatives, meds to help with fluids, stuff to serve as feeds, he had a chest tube that was draining lots of gunk, AND he was on a breathing machine.  

Besides the shock, I felt really exhausted in that moment.  It’s like so much led up to this point and when I walked into the room it was the crushing reality that so much more was ahead.  We had this huge mountain to climb together, except it’s like we had to climb it in the dark, since we wouldn’t know what to expect on a day-to-day basis.  I had to get used to the new reality: this room would become our second home, and we’d have to get used to the beeping and whirring of so many machines and the visible beating of our son’s heart.  

People like to say that “being a man” means being tough.  I promise you, Dads out there, the “tough” you’ve known your whole life is garbage when you go through this process.  The moment I saw my son like this it sucked the tough outta me.  I had to learn what tough really is.  And how did I learn that?  I looked at that 4 pound baby to lead by example.  THAT’S tough.

Add Jaundice to the Menu

NolanBiliLight

One day I came down to the NICU to see poor Nolan in his little bed, with this bright light shining on him and this weird mask covering his eyes.  The nurse said Nolan had some jaundice, which is typical of babies who are born a little early, and the light was called a Bili Light, which was a treatment to help the jaundice along.  The light had to stay on, and so did the mask, until they were happy with his tests.  Grant had some jaundice too, but not as much as Nolan, because he used the Bili Blanket, which was this funky light blanket that would be the envy of EDM fans worldwide.  And he only needed it for like a day.  Nolan had his for several days.  It was pretty depressing because the mask meant you wouldn’t see his little eyes and it almost made him less human, if that makes sense.  

Day after day, we’d come to the NICU and see Nolan under that light.  Occasionally they’d give us a short break to hold him or just love on him a little bit, but mostly it was hands-off, talking-only stuff.  It sucked.  I knew he needed it, but it felt like he was making zero progress.  I mean heck, isn’t it enough he had a heart defect?  Now he has to be all covered up, just laying there to be poked and prodded.  It made me feel awful for him.  For possibly one of the first times (and definitely not the last), I wanted so badly just to be able to fix him.  I would’ve done anything.  Guys are supposed to want to fix things, and here I was helpless.  Meanwhile, Grant was just a few feet away and he was able to wear clothes and be held.  While Nolan only had our voice…

 

Nom Nom Nom…for Dad

NolanNicuBottle1

Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU.  This will always be an awesome moment for me and I’ll tell you why.  Nolan wasn’t the best at bottle-feeding after birth.  The nurses would give him about 15-20 minutes to complete a feed.  If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds.  As you can see in the photos, he had an NG tube in by the time these were taken.  They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed.  One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout.  That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.

It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses.  None of them.  Sometimes, though, he would eat pretty well for me.  And just me.  I was definitely feeling the Dad love there!  So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy.  The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin.  At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me!  I tried to feed him as much as I possibly could because I absolutely loved that bonding time.  I held him and he’d drink quietly and it seemed like all the problems would go away.  It was a sweet time to be with my boy.  And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…

My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down.  So he knew me…we bonded…and it was awesome.

NolanNicuBottle2