A Day in the Life of the HLHS Dad

Hi friends!  One of the highlights of June is Father’s Day.  I wanted to make it a little bigger and celebrate Father’s Month on this blog by highlighting fatherhood-related topics.  I hope you enjoy the first entry.

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When people find out I have 3 kids, including twins and a heart kid, I often hear the same reaction: how do you guys do it?  To be honest, I don’t know, I just do.  But I wanted to take a glimpse into my wacky world and show you a day in my life…

Tuesday

5am: Oh alarm clock, you are the devil.  I am not a morning person and to make matters worse I have to be up particularly early this day for a 7am meeting at work.  So I’m up and looking thrilled:

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Blerrrgh.  Did I mention I’m not a morning person?  But after a shower and some spiffing up, I’m ready to roll to my day:

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6am: Before I go, I need my coffee and a drinkable breakfast, aka the Mean Green Smoothie:

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I can hear the “ewwwww”s from here.

If there’s one good thing about leaving so early is that I beat the typical morning traffic.  Charlotte’s traffic has been getting worse and worse and even though my commute is like a 17 mile drive it sometimes takes an hour or more depending on the – ahem – brain function of other people on the road.  But today the roads were clear.  I needed some jams to get me pumped up for the first important meeting of the day so I chose the album “Suburbia” by House of Heroes.  If you don’t know them, they’re amazing, so check ’em out.  Anyways, I got to work in like 30 minutes (amazing) and even managed to get to my office to check emails before going to the meeting.

7am-2:30pm: So we kicked it off with a 2 hour meeting followed by all sorts of busy stuff including more meetings, lots and lots of walking, tons of emails, long looks at data, and maybe a little lunch.  A little.  This was right after Memorial Day so everyone was ready to roll after the holiday and there was lots to do.

2:30-3:30pm: An early start means an early exit and I got to beat some more traffic headed home.  In fact, I got home with enough time to go pick up my oldest from school, which always makes me happy.  I love to drive up in the car line and see him in his backpack and smiley face.  I can’t believe how big he’s gotten.  When we got home we had enough time to make funny faces once we parked:

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3:30-5:30: It was nice to be home during this time, since I’m usually either still working or on my way home from work around this time of day.  My wife was in the backyard with the twins in our new little inflatable pool.  They were having a ball and our oldest soon joined in:

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I especially liked spending some quality time with my love:

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and, of course, we had time for more funny faces:

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We made some dinner, ate some noms, and then my lovely wife had to head off to work…so it was just me and three little knuckleheads.

5:30-8:00: This is when the house gets turnt.  We played, we read books, we ate fishy crackers.  The kids spilled stuff and I mopped:

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Then we put on the AC/DC pandora station and had our own little rock n roll party.  Nolan even joined in on the drums:

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Finally it was bedtime for the twins.  Fresh diapers, a juice for Grant, and lots of snuggles came next.  Since Nolan has his struggles with eating, he depends upon tube feeds and this would be the first of the evening:

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There’s always been a struggle to get Nolan to gain weight…I wish he could eat by mouth, and we’re working on it…but it’s a struggle.  Sometimes we can put together a string of days where Nolan is gaining weight well and then he’ll either catch a cold or something will happen where he loses it again.  What a roller coaster.  This feed is the first of several tonight for our happy little monster:

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Next it was time to time to get the oldest ready for bed.  He helped me clean up the toys and the rest of the mess he and the twins made.  Then – after a rousing couple games of Candyland – I read him a book and sent him to bed.

8:30: Now that the munchkins are in bed I can allow myself my little centering moment (which I wrote about two posts ago).  Even though there was still a lot to do around the house, I took a moment to treat myself….to COFFEE:

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Ohhhh yeaaaaah.

And for the next 20 minutes or so I allowed myself the time to sip some coffee, relax, and watch some Yankees baseball:

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Then it was time to kick it back into gear.  I did a sinkful of dishes and wiped down the counter tops, swept the floor where my crazy orangutans that I call my twins threw a bunch of crackers.  I even got some laundry done.

9:00: Time for another tube feed for Nolan.  This one was heavy on the calories…gotta chunk him up!

After doing some more laundry and taking out some trash it was time to take a little break for guitar practice:

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This is another hobby I’ve been doing that is good for the ol’ noggin.  It’s really relaxing but makes me concentrate a lot as well.  This particular night I was using my brand new capo, which opened the door to a lot of cool new songs for me.

11:30: Time for Nolan’s final tube feed of the night.  All in all, we’d like him to get about 1000 calories a day and I think we got right there.  The tube feeds are a little bit of a process because occasionally we will mix in some Duocal to add calories, and then you need to pump in his feeds nice and slow so he doesn’t throw up…because throwing up = weight loss.  Usually it’s during this final feed when I take a moment to be thankful that our little boy is doing pretty well, all things considered.  I watch him sleep, watch him breathe, and I am glad he can do both without a problem.  He’s come a long way!

12:00am: My wife is done at work and gets home.  It’s always really awesome to see her and by this point in the day we’re both super exhausted.

12:30-ish: SLEEEEEEEEEEEP….and do it again tomorrow!

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So that’s a day for me, and it’s fairly typical for a workday.  How do I do it?  I just do.  I have a family to help support and I have kids to help raise, and I need to do my best, no matter how tired I might be.  While it might be a wacky life, I’m happy with it since I have my family and I love them.  And I’ve learned so much on this journey, too.

Some of you might be reading this and your life might be different: it might actually be even more difficult.  If that’s you, my heart goes out to you because I really can’t imagine how you do it.  Some of you might have a heart kid on the way: I’m hoping this post doesn’t alarm or concern you: every heart kid is different…please keep that in mind.  Nolan needs a little bit more than a lot of other heart kids and still there are kids who need a ton more than even Nolan does.  Whatever this situation throws at you, I am living proof that parents can summon the energy to make it by…day in, and day out.

While I do stay pretty busy, it would be an epic fail if I didn’t recognize that my wife works 10x as hard as I do.  I mean she gets kids outta bed and ready for the day, she does multiple school drop-offs and pick-ups.  She takes Nolan to all his therapies and appointments.  She handles naptimes and even cooks dinner a lot of the time.  THEN she heads off to work at a bakery for several hours late into the night.  I have no clue where she finds the strength, but there’s no one I’d rather have on my team but her.  I’m very lucky!

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on June 3, 2015, in life and tagged , , , , , , , . Bookmark the permalink. 4 Comments.

  1. A busy day and a great insight into some of the day-to-day concerns of life with a heart child – weight-gain can be such a worry. Good luck with helping Nolan continue to gain weight through his tube feeds.

  2. thefamilypatch2015

    Thanks for sharing your day with us, it is really interesting to see how you “do it” and that “doing it” really does just happen because that’s what needs to be done 🙂 It all sounds exhausting, but it also sounds like you have found a rhythm that works for you all and that’s great to read about.

    • Thanks for the comment! It definitely takes time to find a good rhythm. My wife and I make a very good team, though, and I couldn’t do it without her. Plus she definitely works harder than I do!

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