Blog Archives

The HLHS Dad on The Mighty!

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

________________________________________________________

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.

Advertisements

Cause for Celebration: The Twins Turn Two!

Today is a big, big, big day: Nolan & Grant are two years old!  Man, I can’t believe how fast time flies.  Not a day goes by where I look at them and I just can’t believe that we have twins; lately I’ve been saying I just can’t believe they’re going to be two years old.  It’s been some two years: a 3am rush to the hospital for a c-section, both boys in the NICU, surgeries for Nolan, running back and forth to the hospital, Grant starting preschool, Nolan starting preschool…it’s been quite a run so far for those two little knuckleheads of mine!

I’ve enjoyed every minute with these two guys: I love to see them walk, to hear them babble, and even to scold one another when they do something “not nice” (which is hilarious).  Grant is really into art and Nolan seems to be really into animals.  Grant is like a wrecking ball while Nolan is the sneakier of the two.  They’ve definitely changed our life and I wouldn’t trade them for anything!

This weekend that passed, we had a cookie exchange birthday party at our house for the twins and it was a blast.  Lots of kids, lots of noise, lots of sweets, and lots of friends.  It was a really great time and for me was a good way to celebrate the twins with all the people who invested in them since they came into this world.  Thanks to everyone for all you’ve done for us and the twins!

These two years have been amazing, boys…have a happy happy happy birthday and I can’t wait to enjoy so many more years with you both!

BirthdayCollage

Thankfulness pt. 2: My Family

This is the second entry in a series about thankfulness.

What would I do without my family?  We’re like a basketball team…but with only one tall player.  And I love them all.  Today’s post is a big thank-you to the rest of my family:

Hudson

CoolDude

Oh this kid.  My oldest and most hilarious.  I can’t believe how big he’s getting!  He’s figuring out this whole big brother thing, but he’s showing glimpses of absolutely adoring his brothers, even though he gets annoyed when they steal his stuff.  Such will be our life for MANY years to come.  I really enjoy watching him grow and all the things he’s learning.  And I just believe how hilarious he is, whether it’s his insanely imaginative imagination or him replacing “It’s Time to Dance” from Yo Gabba Gabba with “It’s Time to Fart.”  Hudson is also a wealth of safety advice like “Don’t stand next to a volcano.”  He’s so loving and smart and he taught me how to be a dad, and I just love him so much.

Grant

GrantPantsHead

Nolan’s twin brother and technically the youngest of the 3 boys (by 2 minutes!).  He is a funny little ball of craziness, who loves to dance and wear other people’s shoes around the house.  Since he’s been in preschool this year we’ve discovered that he really likes art…loves to paint and color…so maybe we have a little artist in the house?  I love to hear his “Hi Dada” when I get home from work and I laugh when he wants to roughhouse in the living room.  His laugh is just the best.  The one thing I absolutely love about Grant is that while a lot of the time he wants to steal Nolan’s toys or be a brute, he will always want to share with his twin brother.  If we give grant a cookie, for example, he will immediately go take it to Nolan then come back for one for himself.  If only the world were so giving.

My Wife

Married

This is the real MVP of our family and the love of my life.  She works hard wrangling three kids during the day, doing school pick up and drop-off, taking Nolan to appointments and therapies, and then works nights 4 nights a week.  She is the one who gets Nolan through all his therapies and encourages to do better, she’s the one who fights for Nolan to eat by mouth, she’s the one who keeps our household running smoothly.  Without her drive, Nolan would not have accomplished have the things he’s done so far in his life.  Plus she puts up with a household of crazy males!  I can’t imagine living this life without my amazing teammate, and I love every moment with her.  Thanks for being awesome, babe!

Man, I love my family…my little traveling circus…my band of crazies…I just love them all.  I love that they make me laugh and smile and keep me sane.  I’m so thankful for every one of them and for the joy they bring me every day!

Best Job Ever

When I started this blog I wanted it to be a place where heart dads could come and get information from and connect with a fellow heart dad.  Today, though, I want to actually step away from the “heart” piece and focus on the “dad” part.  It’s Father’s Day and I wanted to wish a happy Father’s Day to all my readers!  I hope it’s an awesome day for you and your families, and I know that with your experience, every holiday becomes a big one when you can spend more time with your heart child and they’re doing well.

I remember back in college whenever I’d be asked the typical “Where do you see yourself in x years?” question in a group setting, I’d often be the only one who would ever mention anything about having a family.  I thought that was interesting.  To be honest, I haven’t had a good relationship with my father and I think that fueled me towards becoming the best dad I could be one day.  Since then, God’s blessed me with 3 awesome boys to help protect and mold into fine young men.  And also to be honest, I haven’t the slightest idea how to do that.  Not the foggiest.  I don’t necessarily have an example to go by so I’m pretty much winging it and learning new things all the time.  Am I the perfect dad? No. Will I ever be?  Unfortunately not.  What I will do, however, is try my very best with every bone in my body. 

A dad’s life is an interesting one.  TV and movies portray dads as typically dumb and lazy, Father’s Day sometimes gets the “meh” treatment (if you compare advertising and whatnot), and I remember all the weird looks I’d get when I was staying home with my oldest son and I’d take him grocery shopping during the day.  Thus far, though, I can honestly say the most important part of being a dad is being there.  No, I don’t mean “being there” as in “Hey, I’ve been on the couch all day everyday,” I mean it as really being there for your kids.  Support them, make memories with them, take lots of pictures, act silly, laugh a lot…because even if they don’t remember it, you always will.  It’s not enough to simply pay the bills and put food on the table, you need to invest in your kids.  And that’s easy to forget, especially when I’m determined to wash a mountain of dishes but my oldest wants me to sit next to him and watch Backyardigans.  Can the dishes wait 20 more minutes til he goes to bed?  They always can.  The world ain’t gonna explode over a little cleanup in the kitchen.  But you know what, sometimes I have to stop and remind myself of that.  And you know what else?  I always feel relaxed and happy after watching Backyardigans with my 4 year old, as opposed to washing dishes, which can be exhausting sometimes.  Why is this important?  Lemme drop some knowledge on you: about 95% of the inmates in prison in the United States right now are males, and about 85% of those men had no father involved in their life.  Yeah.  Whoa.  This is serious business.

I’ve started reading a book called “Father Fiction” by Donald Miller (I’ve mentioned him on this blog before, his books are great), which is about his growing up without a dad and learning what manhood and fatherhood really is.  I think ALL guys should read this book (You’ll sometimes find it published as “To Own a Dragon”…same book). 

father-fiction

One part that has struck me about this book is his discussion of Dwight D. Eisenhower’s book “At Ease: Stories I tell to Friends.”  Eisenhower notes that through his childhood, his parents taught him that his very existence was important to their family and the the world as well.  Discussing this, Donald Miller writes, “Eisenhower’s parents assumed, and taught their children, that if their children weren’t alive, their family couldn’t function…I mean, can you imagine growing up believing that if you didn’t exist, your family would fall apart?  Can you imagine how different the world would be if all children were taught this idea?   I found the sentiment striking, and I wondered what it would have been like if, as a kid, I had felt completely needed by my family.  My mother needed me, it’s true, and she was certainly loving, but she was also burdened with paying bills, working late hours to pay those bills, and managing life as a single parent…She mothered herself into exhaustion…I knew, somehow, that my mother’s long working hours were because of my sister and me.  But I never thought to ascribe my mother’s emotional and physical exhaustion to the lack of a husband and father; rather, I ascribed it to my existence.  In other words, I grew up learning the exact opposite of what Eisenhower was taught.  I learned that if I didn’t exist, the family would be better off.  I grew up believing that if I had never been born, things would be easier for the people I lived.  A thought like this can cripple a kid…If a kid grows up feeling he is burdening the people around him, he is going to operate as though the world doesn’t want him.”

Makes you think, doesn’t it?

Donald Miller has done an amazing job of opening himself up to people about his childhood and has even developed The Mentoring Project, which wants to equip faith communities to mentor fatherless boys.  I really commend him for that and think it’s an awesome project. 

So dads…will you join me in working harder to invest in our kids?  Give them your time…their childhood won’t last forever.  I love to tell my kids that I love being their dad…and it’s true.  Yes, it can be exhausting and life can be hectic and busy.  But in the end, I love those kids with every fiber of my being and I want to always show them that, whether it’s horseplay on the living room floor, being at every game, or telling them I love them.  Let your kids know they’re crucial to you, your family, and the world.

Again, Happy Father’s Day to all the dads out there…keep being awesome, keep being involved!  For those dads who may be in a hospital today with their heart child, I send especially warm wishes to you: keep fighting for your little one…never ever give up.  Be strong…for them.

WP_20140517_020

Siblings!

When I went to the Camp Luck Annual Symposium, one of the coolest sessions they had was the Heart Sibling Panel.  I was particularly interested in this since, well, Nolan has 2 other brothers…not to mention I wanted to get a glimpse into how siblings feel through the heart journey. 

I gotta say, I was impressed.  No, I was blown away by these kids.  First of all, it takes a lot to get in front of a room of people and talk about anything.  I’m pretty comfortable with public speaking, but it’s not for everyone, and sometimes it takes a lot of courage.  Not only that, they had to open up and talk about what it was like to be a heart sibling.  To be honest, I expected them to talk about how they’re sometimes jealous of the attention the other sibling gets or how they are scared of their sibling’s CHD.  Boy was I wrong.  They opened up about how much they treat their sibling like a normal kid, how much they look out for their sibling, and how much they really, truly love their sibling.  It was touching, it was emotional, and you could tell the kids meant it. 

I went away from that hoping against hope that Nolan’s brothers – Grant and Hudson – would become just as well-adjusted, polite, and caring as the kids on the Sibling Panel.  Seriously.  I mean I expect my house to be full of 3 boys destroying everything, farting, and arguing with each other…but at the end of the day, I want them to take care of one another.  I want them to play nice, to include each other in things, and look out. 

I think Hudson is going to make a great big brother and I think Grant will always look out for his twin (that is, when he stops trying to take his toys all the time).  The next several years will be mighty interesting, as we have to teach Nolan about his CHD but also Grant and Hudson as well.  Hudson knows Nolan has a special heart, but eventually I want him to understand it too.  It’s going to be interesting to juggle all their individual needs and school and activities and church, etc.  Whew.  In the meantime, though, I just love it when they place nice:

BoysHippos

 

So tell me, fellow heart parents: if your heart baby has siblings, how do they handle it?  What tips and tricks have you used successfully?

Christmastime is Here…Cue the Traveling Fear

Now that our twins celebrated their first birthday, it was time to look ahead to even bigger things: Christmas.  But no no no, this wasn’t going to be Christmas all snuggled up at home just the 5 of us and the dog; we were going to pack everyone up and drive down to Florida to be with my wife’s family for a week.  Before we get to that, let’s talk about home.  Last Christmas was spent half at home and half at the hospital with Nolan, who was still intubated with his chest open.  I gotta tell you, spending Christmas in the hospital is surreal, and while he was getting awesome care as always, it just kinda sucks the joy and wonder out of Christmas, since the only wish I had was to have Nolan home.  Now that he was home, we had the chance to really enjoy Christmas as a whole family.  As Hudson gets older, he absolutely loves Christmas and the twins seemed to enjoy the tree and festivities:

BoysSanta

Now onto the travel part of our tour.  We’ve made the trip plenty of times: when it was just my wife and I, it would take us somewhere around 7 hours to make the drive.  When Hudson was born and we brought him, it was a little bit longer, but we were still able just to pack up the car and go.  This time, preparations were just bonkers.  Not only did we have to take the van, but most of the seats in the van would be filled with people.  Me and Bekah in the front, Grant and Nolan in the next 2 seats, then Hudson in the back with the other half folded down.  And we loaded the mess outta that van.  We had a suitcase for me and Bekah, a suitcase for Hudson, and one for the twins.  Then we had to pack snacks, formula, feed supplies for Nolan…ugh, just thinking back on it makes me itch. 

For me, though, the worst part wasn’t so much the packing or preparation…it was the growing paranoia I had as our departure date got closer.  I started to focus a whole lot on all the “what if’s”: What if Nolan’s feed pump stops working?  What if something happens while we’re driving?  Will we be able to find a decent hospital?  Will that hospital know how to treat Nolan?  I know, I know…paranoid.  But for me they were legit concerns: we’d been through so much with this kid, that I didn’t want anything to go wrong.  If I forgot to pack socks or something, that’s one thing, but medical problems are another.  My father-in-law is a Doctor, but he was still 7+ hours away.  We just had to GET there.

We made the decision to (potentially) make the ride easier on ourselves by splitting up the trip both ways and staying in a hotel for a night.  We decided on Savannah as a good stopping point.  I priceline’d a hotel (love me some Priceline) and it seemed we were all set to go.  As they say in infomercials, though, “BUT WAIT!”  As we were starting to load up the car, Nolan was taking a nap in the swing.  I walked over to check on him for a quick minute and noticed that his feet and nail beds were a little on the bluish side.  Not full-blown Smurf, just a little bit.  Sometimes that would happen to Nolan if he’s got a stuffy nose or gets super fussy.  Usually we’ll calm him down or get him sitting up for a bit and he’s fine.  This worried me a bit.  We hooked him up to the sat reader and believe it or not they were reading in the mid-80’s, so it was a little weird.  Eventually, though, it settled down and he was just fine.  Turns out he had some horribly bad diahrrea, which made the first part of our trip a BLAST (lol get it?).  Sorry, that was bad.

Anyways, off we went…and our drive went well: we had Hudson entertained in the back and the twins were relatively happy and we were making good time.  We were working our way through South Carolina, maybe 90 minutes or so from Savannah, when we hit traffic.  I HATE traffic.  I know everyone does, but I can’t stand it.  The 90 minute drive took seemingly forever, and when we finally got to Savannah we were all tired, hungry, and cranky.  Luckily, though, we managed to have a good night’s sleep.  After that we hit up Tybee Island for some winter beach fun before hitting the road again:

TybeeFamily

When we got to Florida, the kids had a lot of fun.  My wife is from a HUGE family, so there were lots of people to play with the kids.  Nolan got over the squirts and was back to his happy self again.  We even got to go to LegoLand as a family.  Hudson loved that, but even in the winter, Florida proved to be a little too hot for Nolan.  He was sweaty and cranky and we knew we couldn’t have him outside much longer.  Luckily LegoLand has what’s called the Baby Depot: it’s an air conditioned building with a changing/feeding station and a play area for little ones.  Grant crawled off to play legos with Hudson, and we laid Nolan down on a big bean bag chair in the corner.  As soon as he hit that chair he zonked out.  Poor little guy.  Yes, extreme weather is difficult for heart babies, you have to be really careful of the heat as well as the cold.  I have a feeling most of our family trips will be in the Spring and Fall. 

We eventually made our way back – with another Savannah stop in between.  It was a really good trip: no major issues with Nolan aside from the early tummy troubles.  None of my paranoia came true, which is great.  I can’t lie, I was expecting it to be a trip of horrors, full of screaming kids and an extreme lack of sleep.  But I was pleasantly surprised.  I know we won’t be able to make tons of trips with our little ones, particularly Nolan (it’ll be easier once he’s eating by mouth, hopefully)…but we got the most out of this one and I will cherish the memories.

Having Fun

I’m learning that once the Glenn Procedure is done, it gives you a lot more ability and freedom to just have fun with your kids.  Eventually the cardiology appointments move from weekly to monthly to every 3 months.  The only time you go to the doctor is for your average ear check or a vaccine.  Life is good. 

One time where we had a ball is Halloween.  While our oldest dressed up as a police officer, we had no idea how to dress the twins for Halloween.  Salt and Pepper Shakers?  Thing 1 and Thing 2?  We decided to eventually dress them up as Charlie Brown (Grant) and Linus (Nolan):

TwinsHalloween

Hilarious.  They looked adorable in those outfits.  We did a little bit of trick or treating with them, but otherwise they stayed in.  I’m sure next year will be an even better Halloween for them.  Then the next year is gonna be just plain bonkers.  Heck, Nolan liked Halloween so much, he even dressed as a skeleton:

NolanSkeleton

Nolan has been turning out to be quite the ham.  And he LOVES the camera…you just point one at him and he has the biggest smile, that little cheeser.

In spite of all the challenges of having a heart baby, you definitely need to make time for fun.  Laugh a little.  Heck, laugh a lot.  Make silly faces and noises…your heart baby is still a baby and likes the same stuff as other babies.  So dads: be generous with the ticking, the tummy raspberries, and all that silly stuff.  I know Nolan loves it…and his smile and laugh is worth so much to me.

NolanLightsaber

The force is strong with this one

HipsterNolan

Hipster Nolan listens to music you’ve probably never heard of…

Coming Home!

February 2013 brought us great news: after 2 months in the hospital, Nolan would finally be coming home!  I believe I was at work that day, so I quickly told my boss then headed down to the hospital with Bekah.  There was still a lot to do: Nolan would need a final clearance from all the doctors, we’d have to pack up all his gifts and his scale and his feed pump and IV pole, etc.  Someone from the hospital’s pharmacy came up and brought us all the medications they filled for Nolan.  It was very busy and very exciting.  Those of you who have gone through this know, however, that it’s never ever quick.  There’s a lot of waiting…and waiting…and waiting. 

Finally it was time: I went to get the van and the whole time I had a spring in my step and I couldn’t stop thanking God that Nolan would finally be coming home.  Even though Nolan was small and not completely strong, I was far less nervous bringing him home, I was just so happy. 

It wasn’t til I got home, though, that reality sank in: this is all up to us now…there’s no more nurses around, no doctors, none of that…just us, a scale, and a sat reader.  Oh boy.  We wanted to be sure we did everything right so that Nolan had the best chance of getting to his next surgery.  And every day without problems is a step in the right direction. 

It was the first time we had all three of our boys together…it took 2 long months, and we had been through so much.  But the journey was just getting started.  In the meantime, though, it was nice to have our twins together once again…that’s Grant on the left and Nolan on the right:

TwinsHome

Meeting Big Brother

As I mentioned before, the flu ban at the hospital made it difficult on us because we couldn’t have any of the other kids with us.  As February was underway the flu ban was finally lifted, which meant that Hudson would finally be able to meet his little brother.  I know I was excited!  We tried to play this up really big with our 2-year old, like he was going somewhere special to do something completely awesome.  We had someone watching Grant so that both Bekah and I could go with Hudson. 

So we loaded him into the car, and went on our way to Levine Children’s Hospital.  We reminded Hudson, as always, to be a good listener and all that good stuff, and we continued to play up the fact he was finally getting to see Nolan.  We got to the hospital and rode the elevator up.  Hudson seemed pretty happy so far. We buzzed in to the Progressive Care floor and as we walked down the hallway, the nurses were very happy to see Hudson.  We said that it was his first time meeting his brother and they were about as excited as we were.  When the nurses talked to Hudson, however, he clammed up in spectacular 2-year-old fashion.  I should’ve know what was coming…

We got to Nolan’s room and we wanted Hudson to at least get up and say hi to him.  He wanted no part of it…Hudson decided he was going to be completely HORRID.  And he was.  He was all over the place, he was defiant, he didn’t listen.  And I was pissed.  I tried to put on a movie for him to watch and that appeased him for like 10 minutes.  Unfortunately our visit had to be cut really short because of Hudson’s behavior and I was really disappointed.  I did, however, attribute it to Hudson being tired from his already long day.  I did, after lots of threats (lol), manage to get Hudson to snap a photo with his brother…ah the joys of parenting.

NolanAndHuddy

Grant Comes Home!

So while I was having a fun day with Hudson at the NC Transportation Museum, Grant was getting ready to be discharged from the NICU: he got a circumcision and a hearing test and the doctors were happy with his jaundice levels.  Since Hudson wasn’t allowed in the NICU, I had my mom meet us at the hospital to entertain Hudson in the waiting area while we got Grant ready to go home.  During the pregnancy, Bekah and I spent a lot of time talking to Hudson about the babies and their names.  Hudson, in all his 2 year old glory, couldn’t pronounce their names.  Instead he would refer to them as “Nolit and Cramp”.  HILARIOUS.  So Hudson knew he would be a big brother, he just didn’t completely understand the concept.  So I took Hudson with me to the parking garage to get the van and I told him, “Your brother Grant is coming home!” and he just replied with an “Ok.”  We pulled up to the front of the hospital, where Bekah was waiting with one of the NICU Nurses who helped her out.  I told Hudson to stay in the van while I got out to help with all our stuff.  I put some bags into the back and then picked up Grant’s carrier and popped it into place right across from Hudson.  Hudson curiously leaned over and unleashed this gem: “What’s THAT?!”  

After I cracked up I told him it was his brother Grant, and he gave me this whatchu talkin bout willis look.  And we were off.  It was bittersweet, because I remember making this same drive when Hudson was ready to come home as a baby and I was just mortified of how he was doing in the back.  This time around i was a pro, so I was happy to have Grant ready to come home.  Sad thing was, I’d be leaving Nolan behind…and things would get more challenging with one baby at home and one baby in the hospital.  We got home to get settled in and Hudson was still unsure of this whole “baby” thing:

GrantComesHome

 

But eventually over time he came around to be a great big brother:

HuddyAndCrampy

 

Biggest challenge to having Grant home?  Lack of sleep…oh yeah…I forgot that babies don’t sleep.  So not only were we sleep deprived, we’d either take turns going to the Hospital, or would work finding people to watch the two boys while we went to see Nolan together.  Grant is a sweet, chill baby, though, and we love him to death.  It was good to get him out of NICU and home where he belongs.