Nolan’s Cardiology Check-Up

Some weeks ago, Nolan had his regularly scheduled Cardiology appointment, which occurs every 6 months or so.  For the last several visits these have gone very well and since I work really close to the Cardiology office, I can pop right in and be part of the visit then go right back to work.

This appointment, however, was giving me a tiny bit of anxiety.  Ok, not a tiny bit but not a huge amount.  Why?  For some reason I had it in my head that we were going to go in there and they were going to start talking about the F-Word…the Fontan procedure: the next – and hopefully final – step in his surgery plan.  Was I read to talk Fontan?  Heeeeck no, I wasn’t ready for none of that mess.  I think part of that anxiety was due to seeing several people’s HLHS kids get the Fontan at about 2 1/2 years old as opposed to 3.

You see, Nolan is still a little guy: he is struggling to get to 24 pounds, and I was scared to death to even think another surgery because he was still so small and it made me scared to think we’d have to hand him over, again; they would cut him open. again; and then we’d wait…again.  Normally I try my best to take everything in stride but for a little while this was driving me bonkers.  I was terrified to hear the F-word during this appointment and it was like I got into my own head about it.

When the day finally came for Nolan’s appointment, I stepped out of a meeting I was in and walked over to the Cardiology office.  That whole morning I was preparing myself.  When I got there, I saw my wife holding Nolan, who had his shirt off and had obviously been crying very hard.  My wife said that as soon as he saw the rooms in the back, he went nuts and wouldn’t stop crying and wouldn’t sit still for an EKG or a pulse ox reading.  Woo boy.

(Side note: Heart Parents, I know our kids go to so many doctors and this is why they go nuts and cry…it’s not the Dr’s fault, but what have you done to ease that anxiety in your kids?  Please share because I know it’s not just us!)

So I picked my my crying little beast and we walked in to do an Echo.  Nolan was not having it, so I had to hold him and put on Yo Gabba Gabba on my phone so he could remotely relax enough to get a decent Echo done.  At first he was going nuts and I thought I was gonna come out of there covered in that ultrasound goop.  But MAJOR kudos to the tech, who still managed to get good pictures.  And to help things along, Nolan’s Dr was in an adjoining room watching the Echo as it was being done so he met with us quickly and said Nolan’s heart function looked great and that they wouldn’t have to see us for quite awhile and we wouldn’t begin to have the surgery conversation until next spring.

Next spring?

Now I know that you’re thinking: “Chris, you’re gonna worry yourself all the way til then?”  Well I hate to burst your bubble, but no.  I’m not.  That news actually made me very happy.  I was glad to hear his little heart is doing well and that we still have some more time to focus on feeding, weight gain, physical therapy, more laughter, another Christmas, etc., before worrying about surgery.  It’s a nice feeling.  I know the surgery is inevitable and I’m sure the anxiety will return as we get closer to that time.  But it was good to get our little man dressed as he watched Yo Gabba Gabba, and to focus on getting back to our little life as we know it.  I’m so glad to know he’s doing really well so far, I’m proud of him:

The Man in the Mirror

A little while back I wrote an entry about self-care that included things like aromatherapy, healing touch, breathing, getting a hobby, etc.  Since then, I feel like I’ve stumbled upon something that should’ve landed on that list, had I known about it at the time.

We can all agree that it’s very important for Heart Parents – and anyone really – to practice kindness, empathy, and compassion towards others, right?  These are all very important things to do so that we can make the world a better place.  The reality, though, is that sometimes kindness, empathy, and compassion can seem a little finite.  If you picture it like a gas tank in your body, over time you’ll end up on E and all burned out.  But if you work on keeping that tank full, you don’t have to worry so much about that burnout.

This begins with you.  It’s not about loving harder or giving more hugs or high-fives.  It’s not about digging deeper for more empathy.  It’s about taking a long, hard look in the mirror and realizing that often the person that needs kindness from you is….you.  You see, there’s only so much of yourself you can give before you have nothing left, no matter how helpful you want to be.  And when that happens, you will pay the price physically and mentally.

A little while back I was able to learn a little bit about this concept of compassion fatigue, which is a by-product of being compassionate.  It doesn’t make you weird, it just means you are actually compassionate, but you’ve work it out like a muscle that you exercise too hard.  You need to rest, you need to recuperate to get that strength back.  One of the biggest things I’ve taken away from this is that it’s important for us – whether you are a Heart Parent, a nurse, a doctor, etc. – to practice kindness towards ourselves.  So many of us give but never give to ourselves.  So what does this all mean?

Try to do something nice for yourself…maybe not everyday, but every few days.  I’m not saying you need to run off to the beach or buy a sports care on the reg (but if you do go to the beach, bring me along yes?).  These kind acts are simpler: getting outside for some fresh air, going for a bike ride, doing something that makes you smile or laugh.  Take a moment of your day to re-fill your compassion reserves.  For me, my nice thing that I do for myself is coffee.  When it comes to coffee, I’m a little like this:

I love my coffee…a lot.  I’m not the person who drinks excessive amounts of it, just 1 or 2 cups a day really…but everyone who knows me knows it’s like my one big vice (if you could even call it that…I mean, c’mon son).  Anyhow, what I started doing some nights is once I put all the kids to bed, I come downstairs and make myself a cup of coffee.  Just one.  Then I sit on the couch and I drink my coffee and I just…exist.  Sometimes I watch a baseball game, sometimes I stare off into space, sometimes I look for funny memes online, sometimes I have deep thoughts (“I swear DJ Snake’s new song is just a slowed-down version of his last one”).  It doesn’t matter what I have to accomplish before the night is done, it doesn’t matter how badly the kids have utterly destroyed our house, doesn’t matter how high the pile of dishes are.  For those few moments I give myself the gift of coffee and the chance to be and the chance to breathe.  It doesn’t take long, but I find it to be an incredibly powerful and centering moment.  I usually feel quite refreshed and energized and I finish all the things I need to do that evening.  I find myself sometimes really looking forward to my small moment with coffee.  Like if I am wiped out from a busy day at work or my kids are being absolute hellions…it’s as if I say to myself, “I just need to get to the coffee.”

This doesn’t cost me a ton of money, it doesn’t take a lot of effort, and it’s not hard to do.  What is challenging is finding that way to be kind to yourself. This is also not selfishness…it’s survival.  Don’t let your kindness be something that pulls you away from your family or your work or other responsibilities (“The HLHS Dad said to be nice to myself, so I’m quitting my job and moving to Palau for 6 months!”  NO.).  Find those small things that just make you happy, then find ways to use them to rejuvenate your mind, body, and spirit.  You’re going to find that this is keeping you from absolutely losing your mind.

So today, going forward, I want you to never forget the man in the mirror: be kind to him as he is kind to others.

Talking Through

I don’t know if this happens to anyone else, or maybe it’s just me due to special circumstances, but there are occasional moments that bring back early memories of this heart journey.  And not like those “Awwww” memories…it’s more of those “Remember how much that sucked? BLAHAHAHAAA.”  You ever have those moments?  Like something: a visual, a sound, a place; that takes you right back to a moment and just messes you right up.  Yeah it happens to me sometimes.

I remember the first time I went back to visit the CVICU when it wasn’t for a patient-related need.  I can’t remember the exact circumstance, but I think we were either dropping off gifts for the staff or care packages for the patients that my wife put together.  Either way, things were just fine as we drove to the Children’s Hospital, got our visitor’s badges, rode the elevator up, got buzzed onto the unit and walked down the all-too-familiar hallway.  We were greeted by all those nurses that had since become like family to us…and it was sweet.  AND THEN.  IT HAPPENED.  In the distance…over the sound of everyone talking…over everything else, I heard it: the beeping of the pulse ox monitor.  The faint ding…ding ding…DING DING DING, that I heard so many times.  And suddenly I felt my temperature rise significantly and my palms got like this:

I wasn’t full-on Shawn Kemp sweating, but I was close.  And for a brief moment it’s like time stood still while the memories came crashing back: being scared, being tired, being worried…all those days after days after days.  It was very brief but it felt like forever…and I kinda remember going back to the car and commenting how crazy it was to hear all those familiar sounds.  But after that, trips to visit the CVICU were just fine for me.

Last year I had the opportunity to visit the NICU for a purely work-related matter.  There are safety checks that several of us on staff are assigned to do and I was covering someone’s assignment, which happened to be the NICU.  I was like, “Yeah I’ll do it, no problem.”  And I walked around with the Nurse Manager, looking at fire extinguishers and gas tanks and whatnot.  Then the time came, and honestly I didn’t think anything of it: the Nurse Manager badged us in to the very nursery where both Grant and Nolan were.  The door swung open to the dim light of the NICU and I immediately saw the spot where they both used to be, since they were right there in front of the doorway.  While the NICU is very quiet, the sound of my heart beating was deafening.  I remember that familiar feeling of sweaty palms and the thoughts that came rushing back…back to those moments where we didn’t know what would happen.  The Nurse Manager was talking but all I heard were those Charlie Brown-style wah wah wahs.  As before, it lasted a brief moment and I turned to the Nurse Manager and said, “You know it’s amazing being back here…my twins were right in this spot after they were born and I haven’t been back since then.”  And we chatted about that briefly and I felt much better and we continued on with our work

The last instance of this was very recent: I was with my co-workers doing a very fun video project and we were going throughout the hospital filming staff doing fun stuff.  We eventually made our way to the OR floor.  As their Nurse Manager wrangled up some staff for our video, I saw it.  Straight ahead of me was this little pre-op holding area…the very area where we made the long walk to bring Nolan before he went in for his Norwood procedure.  That moment was seared into my mind because it was the most scared I’ve ever been in my life because I didn’t know if that kiss I planted on his little head would be the last.  Being there was very intense for me because – let’s face it – I would’ve never in a million years thought I’d be hanging around the OR floor.  I mean come on.  But here I was, and the feels were real, man.  I stood and stared, and stood and stared.  Finally a co-worker came up to ask me a question, which I sorta half-answered.  Then I turned to him and was like “Man, this is crazy being down here,” and I pointed to this little holding area and told him all about it.  He thanked me for sharing the experience and said it’s a good one to share since it can help clinical staff understand the level of anxiety our patients and families go through.  I was thankful for that and it honestly helped me feel better.  From there I was fine, the video was awesome and the OR staff were hilarious.

I’ve written before on this blog how I do think Heart Parents suffer from PTSD.  I firmly believe it.  I also believe that it’s different for everyone: I’m sure some people have it in extreme forms and some people will just get these flashes of it.  Either way, I’m sure as you’re reading this you’re remembering a moment where this has happened to you.  And it’s ok, it doesn’t make you weird or defective.  And it doesn’t necessarily mean you need to seek any kind of professional help (though I’m not the person who should help you decide that).  In my experiences above the one thing that was a common thread in these “Raging Remembrances” was the act of calling out what I was experiencing and talking about it.  I’ve found that if I say “Hey this reminds me of such-and-such” it allows me to acknowledge the feels are real and that I understand them.

I’m not saying you have to be all touchy-feely or whatnot…I’m saying I hope that you get comfortable with sharing your momentary Raging Remembrances…that at least brings someone into the ring to be on your side.  Heck you don’t even have to share it with a fellow heart parent, just share.  If you talk about it, you avoid packing it away.  Sure you can get away with packing one or two or three of these memories…but over time you’re gonna run out of room…and when you try to stuff one more thing down it’s going to come bursting out and it’s gonna be U.G.L.Y.

While it does take some bravery to talk things out, remember that you don’t have to go into the WHOLE story.  Just a dab will do you.  Give it a try the next time something sets off your Raging Remembrance.

This One’s For The Mamas

It’s Mother’s Day!  I wanted to spend a moment today and send a special shout-out to the Heart Moms out there.  You’re our partners in this heart battle, you brought our little heroes into this world.  You’ve worried more than you ever have before, but you’ve also loved more than you ever thought you were capable of loving.  You’re the ones our kiddos want when they skin their knee, and you’re the one who wipes away the tears and assures them everything is ok.  I think it’s safe to say that – on behalf of all Heart Dads – we really can’t do this without your amazing help, and we’re fortune to be along on for the ride.

I started this blog because everything I saw out there was Moms communicating with each other but the Dads were rather quiet.  But I want to thank you Heart Moms for connecting with each other…I really believe that each day you positively impact someone’s life, whether it’s in your community or across the country.  By sharing your journey you let other Heart Moms know they’re not alone.  Keep it up, you’re going strong, and you serve as such a great example for us Dads.

So to all the Heart Moms out there I wish you an extra special Mother’s Day…let yourself be spoiled and pampered.  After all, raising a hero is hard work!

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And to my wife: the peanut butter to my jelly, the artsy to my fartsy…I am can’t express enough how I am amazed by you.  You corral 3 crazy kiddos in the morning and cart them off to schools and appointments.  You keep track of the therapies and the check-ups, the dinners and the groceries…you’re amazing!  Our kids are so blessed to have an amazing mommy…and I’m so lucky to have you as my wife.  Me, Hudson, Nolan, and Grant all love you more and more everyday!

My Superwoman!

Back At It

Hey friends!  For those of you who follow this blog regularly, you’ll notice it’s been a bit since I’ve posted.  I took a bit of a break and it felt nice to let life happen.  But I missed you all so here’s an update on what’s been going on:

Nolan had a scheduled cardiology appointment, which went well.  I don’t want to spoil the complete result of it, so I’m going to post a little bit more about that in the coming days.

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I managed to sprain my back during a trip to Ikea.  For the record, I was lifting with my legs until the box slipped and I tried to catch it.  The result was some really intense pain…to the point where I couldn’t even pick up any of the kids.  When I went to the doc, they prescribed me some steroids.  Of course, since I have an overactive imagination, this is how I pictured my time being prescribed steroids:

Buuuuut…reality was more like this:

No joke, those things made me into some kinda crazy ravenous beast….I was always hungry.  Luckily for me, it only lasted a week and my back feels 100% better.  Goodness that was a brutal few days at first because I was like “ahhhh my back hurts but blaaaaaaargh I wanna eat EVERYTHINNNNNG!”

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Looking ahead there’s lots of really cool stuff on the horizon.  There’s another Pediatric Congenital Heart Association guest blog coming up soon and I also have the honor of speaking at a parent breakout session during Camp Luck’s Family Camp this month, so that’s really exciting.  Hopefully I do a great job!

It’s good to be back, friends…let’s continue the fun and good conversation!