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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:

Sweaty-Palms

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.

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Heart Dads and PTSD

Can dads experience PTSD while their child recovers from intense heart surgery?  In short, yes.

You’ve read this blog, and you might be going through it yourself, so I don’t have to tell you that having a heart baby is tough.  You get this diagnosis (if they even find it early), learn all about this CHD, then you’re faced with this grueling 7-hour wait while your 5-pound baby goes through a very serious heart surgery.  Then you see him struggle for many, many weeks with his chest open and a machine doing his breathing.  It becomes your life, and yet somehow your old life still continues outside that hospital room.

You have to go back to work and deal with people and their issues.  Man I remember going back to work…I wasn’t ready.  I was this grizzly bear/Incredible Hulk hybrid just waiting to tear someone’s head off.  It was tough.   I didn’t want to be at work, I wanted to be with my son…and even then I could do NOTHING to make him better.  Just hours of sitting there and praying that he would be ok, that he would get strong and grow up to be whatever he wanted.

There was a time, here and there, that I had trouble sleeping because of bad dreams or bad fears.  There were times I felt like I was about to lose my mind.  The good thing is that Nolan had some REALLY great doctors and nurses on his side, and they did a lot to keep me assured and comfortable.  I had a chaplain I used to work with remind me to count my blessings.  And it worked: Nolan turned the corner and I started to feel a little bit more in control.  There were days leading up to his 2nd surgery where I could feel the worry creep back, but his surgery went well…and even a trip back to the CVICU wasn’t bad because he was in there for less than a day and his recovery overall was quick.

Around the holidays, my wife and I delivered some care packages to CVICU and that’s where a few things came back, it’s amazing.  The smells, the sounds…I started to feel a little uncomfortable and sweaty.  It was a totally weird feeling because I was there to do something good, but I was suddenly reminded of those very long days and nights.  I’ve since been able to go back to CVICU without a problem.

So yes, I do think heart dads can suffer from PTSD: this is the most intense, fearful thing a guy can possibly go through.  I know PTSD is usually associated with war – and that’s true – but it can also show up in so many other instances as well.

This is a REALLY great article about the subject: http://smallbeats.childrensomaha.org/can-parents-experience-ptsd-childs-heart-condition-part-1/  and I wanted to highlight one interesting tidbit:

PTSD Dad

So yes, it happens.  And it’s nothing to be afraid of.  I encourage you to be honest with how you feel about your heart warrior’s process.  It’s part of why I started this blog: it’s a way to share and get those things out.  I encourage you to find a really good support system: family, friends, church, whatever…as long as it’s healthy.  And connect with other heart parents, too…that’s why I’m here!

Nowadays I don’t feel like I did that one day at CVICU.  In fact, I get the opportunity to share those experiences with people as part of my job and I’m thankful for that opportunity.  Yes, sometimes I get bummed that Nolan has HLHS and I just wish he didn’t have it, or I just wish he didn’t have another surgery to go.  But I’m also really thankful he’s with us and that I get to see him walk around, eat some food, be silly, and try to climb on me.  Those things definitely outweigh the bad.