Category Archives: family

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!

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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.

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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?

The Big One!

December 10, 2013 was a HUGE day.  Our twins, Grant and Nolan, both turned 1! 

It’s always cool to see your kids grow up, develop, and learn new things.  2013, however, added so much more to that equation.  There was a time where I was so scared that our Nolan would never see his first birthday.  I was worried about what his life would be like.  We’d heard stories about kids who didn’t make it and I was so grateful that our boy was with us and doing well.  So yes, it was a big day. 

We had a little birthday party for the boys at a local coffee shop who let us use their meeting space.  It was fun: we had friends and family there, including a 3-year old HLHS boy who Nolan met at therapy.  The twins loved all the attention and they also loved the cake!

Grant:

BirthdayGrant

And Nolan:

BirthdayNolan

Celebrating with those two was a whole lot of fun.  Each and every birthday after this will continue to be more awesome, because it proves God is a good God, and continues to watch over both our little guys, especially Nolan.  It’s good to never forget everything we’d been through that year, but it’s even better to look ahead with hope and a positive attitude. 

I’m hoping that by next year Nolan will be mouth-feeding so he can destroy some cake all he wants, and that he will be walking around and having just as much fun as everyone else. 

Nolan continues to do great: he’s making strides with speech therapy and physical therapy, he’s gaining weight…life is good for our little man!

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…

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

When Being Thankful Looks Different

I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog.  I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent.  Hopefully for those who have gone through it, this blog shows that you’re not alone. 

I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving.  Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc.  But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.

While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did.  In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared).  There are a lot of babies that are born with congenital heart defects who aren’t so lucky.  They’re born, look normal – just like Nolan – except they go home within a couple days.  And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky.  Many hospitals aren’t equipped to deal with CHD babies, much less recognize them.  Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU!  So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING. 

I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff.  For the bright colors and cheerful decor.  Trust me, when you spend 2 months daily in a place, you notice that kinda stuff.  I’m thankful for their volunteers, the doctors, the nurses, the CNAs.  I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day.  A Children’s Hospital is definitely not a place you want to be by choice.  We had to be there, and I honestly believe LCH is one of the best around. 

I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital.  She continues to be a rock and an amazing mom and wife.  When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis.  Those guys are cowards and they’re weak.  Nothing less.  I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.

Now for the crazy part.  In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort.  I have a job to do and that’s to be a great husband and an awesome dad.  Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective.  Nolan is surviving and thriving and I thank God every day for it!  There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home.  Perspective.  It’s a powerful thing, and I’m thankful for it.  I tell everyone that ever since Nolan was born, my life changed.  I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live.  And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.

Happy Thanksgiving Everyone!

Who Needs Breathing? Not Me!

It was so great to have Nolan off the ventilator!  He was only getting oxygen via a nasal cannula and he was alert and progressing bit by bit every day.  Sometimes I worried about him being in pain, but the nurses assured me that the meds he was on was keeping him in la-la land, but without being completely sedated to the point where he was knocked out.  They likened it to being on laughing gas.  That was ok with me, I guess.  The cool part was that my grandmother came down from Connecticut to visit us: it’s always good to see her, especially since she gets a chance to see all of her great-grandkids.  I know not many people get that opportunity.  Oh yeah, and the awesome food she makes is a MAJOR perk 🙂 

Grandma with Grant:

GrandmaGrant

Grandma with Hudson:

GrandmaHudson

One night I decided to take her to see Nolan in the hospital.  She had gone once already to see him, but this time it was just the two of us.  This night, though, I really wish my Grandmother didn’t come.  We got to Nolan’s room and as usual I asked the nurse how he was doing.  She said they were continuing to back him off of oxygen to see how he would do on his own and that he was doing ok.  I looked up at his monitor and noticed that his respiratory rate was a lot lower than usual.  I pointed this out to the nurse and she was like “That’s ok: as long as it doesn’t go below 20 or so, we’re fine with that.”  Then she went out to the hallway so we could have a visit.  I can’t exactly remember how long we were there, but I noticed that Nolan’s respiratory rate started to go down, down down, til it was right at 20.  Then suddenly it dropped down to 10, then to 6 and I ran to get the nurse and the respiratory therapist.  They jumped right into action and I jumped right into freaking out.  I was pacing back and forth and was really nervous and it was rough on my grandmother too.  The respiratory therapist basically lifted Nolan off the bed and began to massage his back…as long as he was doing that, Nolan was breathing ok.  If he stopped, his breathing would putter out.  I felt like I couldn’t breathe either, this couldn’t be happening.

Finally one of the doctors came in…she looked like she was 14 years old and I don’t remember ever meeting her.  She pow-wowed really quick with a couple other people and then quickly told me, “Ok here’s what I think it is…the sedatives are a little too strong and he’s used to being on the ventilator so he’s relaxing too much, expecting the vent to kick in.  We’re going to give him a medication that will pull him out of sedation but not so much that it will put him into withdrawal.”  I was like “Wait, what?”  And I asked her if she was sure it would work.  She told me she thought so, but you just never completely know.  The respiratory therapist continued to massage Nolan, I continued to pray and freak out. 

An eternity later (or so it felt) the meds arrived and were administered.  We all watched, and I really think we were all holding our breath.  Ironically the only one seeming to be breathing was Nolan (as he was being massaged, of course).  Within minutes, his respiratory rate jumped up, the Respiratory Therapist put him down, and he was breathing just fine.  JESUS.  That was…just, wow.  Crazy.  I thanked the female Doogie Howser and the rest of the staff, then gave Nolan a kiss on the head and gave my Grandmother a big hug.  Then I watched Nolan like a hawk and his respirations stayed strong.  Thank God for a smart, quick-acting doctor and staff.  They are incredible and saved Nolan from a definite emergency. 

Before I had to leave for the night, I leaned down close to Nolan and said, “I love you…but don’t do that again.  EVER.”

GrandmaNolan

So This is Christmas?

Christmas is my favorite holiday, by far.  I love the time of year and I love giving gifts.  This Christmas, however, was a bit different.  Yes, the tree was up and we had gifts bought and wrapped, but having Nolan in the hospital during Christmas made things feel just a tad off.  We did get to take Hudson to see Santa at the clubhouse in our neighborhood, and that’s always fun

HudsonChristmas

 

He’s so big and such a good big brother.  The great thing was that he’s at the age where he can start to get into Christmas, so unwrapping gifts with him was a lot of fun.  Even Grant got into the festivities:

GrantChristmas

 

Otherwise, Christmas was a blur.  I can’t remember what we ate, I can barely remember what people got.  It was a complete blur.  Of course the other thing is that we had to make time to go to the hospital to see Nolan.  At this stage he was starting to slowly come out sedation and would open his eyes from time to time.  It was good to see those beautiful eyes, but sometimes they just looked so sad and it broke my heart.  Sometimes his mouth would open like he was trying to cry, but nothing would come out due to the breathing tube in his throat.  As we prepared to head to the hospital, the first thought in my mind was that this Christmas kinda sucks because Nolan was still in the hospital and we couldn’t have him home and be celebrating all together as a family.  On the long drive down, it didn’t help that no one was on the road and nothing was open.  It was Christmas after all.  We got to the hospital and did our normal routine of riding the elevator to the 6th floor and being buzzed in and making our way to Nolan’s room.  When we got there is when my tune changed.  Nolan’s room was facing the front of the hospital, so it had a really big window, and all along the window sill were Christmas gifts from complete strangers.  There was little stuffed animals, a pillow pet from another heart family, some books, and even a stocking of things for us.  I was just completely blown away.  Whoever left these things didn’t know us, but did it out of kindness.  And you know what?  I really needed to see those things there; not because it was free swag, but because it was done out of love.  I started to count my blessings: I had to healthy boys at home, and Nolan was doing better and better in the best hospital around.  I realized that in spite of our troubles, we had it real good.  We had a home, we had food, I had a job.  Thank you God!  It was a great Christmas after all.  And even better, Nolan’s nurse took a picture of Bekah and I with Nolan, which was our first picture together with him:

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Now in a totally non-serious note, I do want to take a second and highlight my fav gift that was in Nolan’s room that day.  A church (I don’t remember which one) brought Nolan this stuffed animal and blanket combo, and if you squeezed it, it would make the sound of the animal.  Nolan’s animal?  A GIRAFFE.  What sound does a giraffe make?  I just had to know, so I squeezed it.  And I was TERRIFIED.  Apparently a giraffe sounds like a combination of of a chimpanzee and a kookaburra both being set on fire.  It was one of the funniest things I’ve ever seen/heard and I couldn’t help but show it to like every nurse and staff member at the CVICU.  That thing was hilariously freaky and I am SO thankful to that church for bringing it lol.

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.