Congenital Heart Defect Week: Tyson's Story

I wish I knew a lot less about congenital heart defects than I do.

For example: Congenital heart defects are the number one cause of birth defect-related deaths, and the leading cause of ALL infant deaths in the United States.

My son is one of the lucky ones. He’s a survivor. And it only took one open-heart surgery -- so far; he’s facing the potential of another this summer -- to set him on the path to good health.



Tyson at one of his many doctor visits. He can even giggle about them these days.

 

We know it could have been worse. When he was diagnosed, we read the heartbreaking stories of survival rates, painful surgeries and, in some cases, parents being faced with the ultimate loss. 
 
And we personally know families that have gone through much more traumatic experiences: Here’s the story of a fellow teacher in Brooke’s district. Please take the time to read it.

To say life isn’t fair is an understatement. No 7-month-old should have to go through that. No family should have to go through that.
 

This is Congenital Heart Defect week. I’m not going to preach to you. If you don't know Tyson's story, you can read it in my previous blog posts. I’m not one to really buy into these “awareness” events. 

But once you’ve been through something, you feel an allegiance to it. So this is my contribution to the effort. If it causes you to think a little more about families in this situation, or to make a small donation to the research that helps "heart babies," I’ll consider my job done.
 

My son is a daily walking reminder of congenital heart defects. This week, we’ll put him in his heart-embroidered,“Chicks Dig Scars” shirt and hope someone asks what that is all about.

We have a story to tell and this is a good week to tell it.
 

It will start with the words, “Well, we are really lucky…”

The Secret to Enjoying Your Cheese Coneys with Kids in Tow

After doing this for three years and two kids now, I think there is one area where I have parenting down pat:

The dreaded dinner out.

No, I don’t have the perfect make up for the either sorrowful or angry stares you receive when your 3-year-old daughter melts down because just the tiniest sliver of ketchup touched her cottage cheese or when your 18-month-old son throws a fit because he wants to hold his own cup and doesn’t like your parental attempts to save the restaurant from flooding.

But I am a fast eater. I mean really fast. And if there is anything I have learned as a parent of toddlers, it is that you have a very short window when eating out. You basically need to plan your get-away while being seated and ask for the check as soon as your food reaches the table. Otherwise, you are playing with fire. And I mean fire of the worst kind: a complete melt-down-by-a-3-year-old fire.

I used to be one of those single guys who ate out by himself, quietly reading the paper in between trips to the buffet bar. I hated when my Frisch’s fish sandwich was interrupted by the temper tantrum of a 2-year-old. I looked on in disdain at the parents who couldn’t keep their kids under control in a public place.

No more.

I now know that there is no controlling the emotions of a toddler. The littlest things set them off and getting them back on course is more difficult than moving Disneyland to Ohio.

Threaten to take them to the car? Three things are going to happen. First, they are going to escalate and get louder at the thought of losing the privilege of eating out. So your situation actually worsens. Two, all eyes will be on you when you carry a kicking and screaming toddler from the restaurant. Embarrassing. Three, you are going to miss your dinner.

Those who know me know I don't like missing dinner.

Threaten punishment at home? As “soon as we get out of here, I’m going to…” Good luck. They will have long forgotten the incident and punishment will be a moot point. You can’t learn if you don’t remember why you are being punished. Children have the attention span of a gnat.

The best thing you can do is prevention. Get out of there before a melt-down happens.

I am one of the fastest eaters you will ever meet. When I was a kid, we were poor. Hot dogs were a regular meal. Hot dogs come in packs of eight. There were five members of our family. I can guarantee my dad was getting a second dog. The other two were up for grabs to the fastest eaters.

I learned young.

So when it comes to restaurants, my wife and I have a game plan. We sit down and immediately ask for the kids’ food. That gets delivered first and we hope it holds their attention. When our food comes, we immediately ask for the check. We sometimes have to explain our “short window” to the server, but most of the time they get it. They either have their own kids, or they are thankful we are willing to get out of there before the floor under our table is covered with Splenda packets.

Then I do my thing. I eat like Hannibal Lector at the county morgue. My fork flies fast and furious. Just about the time the kids are starting to get antsy, I am cleaning the last bit of Skyline chili off my plate.

Then, it is wait-and-see time.

If we all get to stay at the table until the wife is finished, that is a bonus. We just enjoyed a nice family dinner. But if one of the kids is on the verge of a Tasmanian Devil impersonation, I am free to swoop them up and run for the car as fast as possible, leaving my lovely bride – and our fellow diners -- the luxury of a peaceful meal.

Voilà! There you have the Gregg secret to eating out.

Parents-to-be, take heed. Start practicing now. Study the menu for the shortest cooking times. Learn what goes down smoothly and what will take time to eat. (This is no time for crab legs, for Heaven’s sake!) Know what restaurants have the best items of distraction, or bring them with you. (We have even been known to bring the iPad.)

You heard it here first. Bon Appétit!  

Melt Downs Here, There and Everywhere

Life with two toddlers can be interesting. You are always walking on eggshells, wondering what might set them off on a crying jag. They get upset at the smallest of things, but that small thing could result in you bolting from a restaurant and taking refuge in a car from the stares of a thousand fellow diners who wonder why you can’t control your child.

How do they make tears appear on demand? It is an unexplained phenomenon. How do they get so fired up about the smallest thing? They cry better than the cowardly lion in the Wizard of Oz. And how can they completely go insane over something as small as a sticker not sticking to their shirt?

I have two children who are as different as night and day. Tyson is mellow, laid back and a “good listener” when it comes to obeying mom and dad. Sydney is….well, she is going to read this some day, so let’s just say she is the, er, opposite.  The battles we are going to have during her teen-age years are going to be epic. If I don’t have a heart attack before then, it will most certainly come during one of her ginormous fits over not being allowed to stay out all night with her bad-boy boyfriend.

But they are two-of-a-kind when it comes to melt downs. On any given day, we have a couple of crying fits out of both of the children. Over the damndest things.

Here are the odd things that can make either one of my kids go into a crying fit:

Sydney

The radio not playing her favorite song.

A song on the radio sung by a man instead of a woman.

Me singing a song. (This brings others to tears, too….I just beat you to the joke you were thinking. Ha Ha.)

One of the dogs touching her as it walks by.

Any clothing item she is wearing, any part of her body, or any toy she is playing with getting even a single drop of water on it.

A sticker not sticking to her clothing. (She has even awakened in the middle of the night and cried long and hard to the point where I have to go in and settle her, all because the sticker she put on her pajamas before she went to bed is not there at 3 a.m.)

Going to bed.

Waking up.

Not getting to wear her Halloween costume anytime, anywhere, any day.

Her shoes being too tight. (Not too small, mind you. The same shoes she wore the day before and will wear the next day. Just on THIS day, they are too tight.)

The sun going down.

The moon not being visible at night.

Dinner time.

Her dad calling her Sydney Grace Gregg. (It is JUST SYDNEY dad!)

Tyson 

The dogs staring him down when he has a snack in his hand. (Not actually stealing the snack, but just looking like they might steal it.)

Anything other than Team Umizoomi being on the television.

The robot in Team Umizoomi swimming in an Olympic-style race. (No idea. But he can’t seem to watch this episode without cowering and crying.)

Not being allowed to push a desk chair around the house. (It might be a good workout for him, but we don’t need any scrapes on the wooden floor.)

Not getting to go to bed. (Unlike his sister, he likes to sleep. He is ready to go down about 8 p.m. and gets cranky if you delay.)

Sitting him in his bathtub seat rather than just letting him rough it alone in the tub.

Tearing his food into bite-sized pieces rather than letting him chow down on something that would necessitate me performing the Heimlich maneuver.

Not letting him eat the top of a crayon. (I’ve caught him with blue or green tongues more than I care to admit.)

That’s just a start. If I were to track the things that upset them to the point of anger/tears for the next six months, this list would be 1) as long as Kirstie Alley’s grocery list and 2) as crazy as a lunch date with Amanda Byne and Lindsay Lohan.

Yes, Syndey’s list is much longer. That is either because she is a girl, because she is older or because she is a drama queen. You make the call.

I can laugh now. But when we are going through these little mini-fits, laughter is the furthest thing from my mind.

Destined for The Big Bang Theory or Monday Night Football?

Sydney is not quite 3. She is smart as a whip, has an incredible vocabulary for her age, is extremely klutzy and a “girly” girl to the Nth-degree.

Tyson is 15 months old. He is rambunctious, says only a few words, seems uninterested in learning and can climb a set of stairs faster than I can walk them.

Can you predict your kid’s future in the first couple years of life? Will these traits follow them into their teens? Is Sydney destined to be a bookworm and the last kid picked in gym class? Will Tyson be the star athlete who can’t score enough on his SATs to play in college?

I’m asking. Please weigh in, veteran parents.

I realized that what I have just described is stereotypical of boys and girls. But this has to be more than that, doesn't it?

  

                                                     Princess Sydney
 
Sydney can carry on a conversation like an adult. In fact, she talks TOO much. She is sometimes like Robin Williams on crack. Or Robin Williams when he wasn’t on crack.

She loves to have a book read to her. She has a great memory. She puts things together quickly. After two readings of Goldilocks and the Three Bears, she started to call her oatmeal “porridge.”

It has always been like this. She could say a couple dozen words at a year old and she knew her ABCs and how to count to 20 by 18 months.

I don’t know how she compares to most kids. I do know of the few we regularly encounter, she seems ahead of them intellectually.

She’s also a grade-A, Jerry Lewis-like klutz. She falls a lot, runs funny, can’t even position her hands right to catch a ball and will fail to find something that is six inches from her feet, despite detailed directions.

She appears to have zero athletic ability. She’d fit right in with the gang from The Big Bang Theory.

We face a big decision with her – her birthday is Aug. 30. She turns 3 this year, but in a couple more it will be 5. I have no doubt she will intellectually be ready for kindergarten. But will she be physically?

She will be the youngest and probably the smallest – she is petite – in her class. I worry not about kindergarten, but later years. Will she be the last person picked on the playground? Will she have trouble standing up to bullies? Will she be a terrible athlete who could benefit from being older than her classmates as opposed to younger?

She also is as girly-girl as you can get. She wants her toenails painted and she wants to wear princess dresses. She would definitely be Blair Warner and not Jo Polniaczek if she lived in Mrs. Garrett’s house and was learning the facts of life.

                                                      Preparing to destroy a bag of blocks

Meanwhile, Tyson is the opposite. The kid doesn’t say many words -- in fact, he prefers to communicate in grunts -- has little interest in being read to and seems to shun all intellectual endeavors.

But does he like to motor. Never wants to sit still. He’s a Tazmanian Devil.

He's the reason baby gates were invented. He wants to climb every step he sees and do it in record fashion. He literally laughs as he crawls up.

The other day, he started wrestling his older, and much bigger, sister, tackling her to the ground and climbing on top of her. The kid just learned to walk and he’s already tackling people like he is in the WWE.

He’s fearless. It is not unusual for us to find a big red knot or welt on his head or face and have no idea how it got there. I’ve even considered calling child welfare on the wife, but then we’ll see him run into a wall or chair or something and it becomes evident how they made their way to his noggin.

When I read to him, he grabs the book out of my hand and turns the pages himself, throws it on the ground or tries to tear the pages apart. He has as much interest in books as Snooki.

So, is this them? Do kids maintain the same traits they show in the first couple years throughout their lives?

More importantly: is there something I can do to head these things off?  I want both of my kids to be well-rounded. What can I do to ensure that?

Is this a nature vs. nurture debate?  I’m not sure.

Weigh in veteran parents. Tell me how your children changed or remained the same from when they were toddlers. I’m interested.

A Couple of Firsts in the Gregg Household

Hello. It has been awhile.

Things ARE happening with the kids. And yes, they ARE funny. But I have been either too busy or too lazy to post. We had a vacation. We prepared our house for sale. LeBron returned to Cleveland. There was that whole World Cup thing. (Ok, I maybe caught about five minutes total.)

We do have two freaking kids under the age of 3, for God’s sake. Give me a break. I have mastered the art of working and parenting on four hours of sleep a night for weeks at a time, but there is not a lot of energy left for writing.

What has happened during the past two months? Well, Tyson has taken his first steps and Sydney has started using the “big girls” potty.

Let’s start with Sydney.

My wife likes to say she is potty trained because she can sometimes go a whole day without any accidents. That’s like saying Justin Bieber has matured because he hasn’t done anything stupid or annoying in a week. You know there’s another episode right around the corner. I say a kid is not potty trained until there are NO accidents, including sleeping through the night without a diaper.

We should have potty trained her long ago. I planned on having her trained last summer, before she turned two. But then we had the stuff with Tyson’s heart and we were consumed with that, well into this year. Potty training Sydney required focus and stamina we did not have.

We began trying this spring, but we really began in earnest in June, when my wife, a teacher, began her summer “vacation.”

I put that in quotation marks because is staying home with two children under age 3 ever really a vacation? I know there are some weekends when I walk around my disaster of a house searching for a corner to escape the screaming and crying and just pray for the sweet relief of 8-10 hours of work at the office.

  

Sydney has done pretty well since Brooke took over full time. Most days, she can make it through the day without an accident. Accidents usually happen when she is doing something fun, like playing on the iPad. She doesn’t want to stop and go to the bathroom, so she just lets loose.

On the couch. Or the floor. Or even outside on the deck.

I do not understand kids. What in the world would make you feel like it would be a good idea to wet your pants? She’s of an age where she understands consequences, so this makes no sense to me. She is consciously choosing peeing herself over walking to the bathroom.

She used to have her own little potties, one upstairs and one downstairs. She was never more than 15 feet from a potty, yet she periodically felt it easier to just go in her panties than walk over to the potty.

By the way, those little potties are kind of nasty. I’m not sure how guys who have to clean toilets for a living ever become comfortable with it. Is it like working in a casino, where after awhile, you are deaf to the clamor of the slot machines? I’m not sure I could ever get used to scraping someone else’s poop out of the toilet or regularly experiencing someone’s pee sloshing over my hands.

Now that she is on the “big girls” potty, at least I can just flush. Of course, I still have wipe duty. For some reason, my daughter has chosen daddy as her dedicated potty assistant. Lucky me. So, more often than not, I get stuck wiping while my wife gets more glamorous duties, such as turning on the right cartoon. Why can’t I get a job that requires me to sit on the couch and work the remote? I’ve been practicing for that my whole life.

I guess it could be worse. My co-worker has a 2-year-old who gets up in the middle of the night and poops in dresser drawers. How'd you like to have to clean that up? Now THAT is funny. 

Sydney’s got a long way to go. We are reading books to her about going to the potty in hopes it will stick. We cheer for her after every successful evacuation. That alone leads to some uncomfortable episodes where she will emerge from the bathroom and squeal “I did poopie!” in hopes of getting her parents and WHOEVER ELSE MIGHT BE VISITING to celebrate her with a round of applause.

Still, I think we’ll have her completely trained before her third birthday on Aug. 30.

Now, to Tyson.

Sydney was a late walker, so the fact he had not walked by age 1 was not a worry for us. Given what he had been through with his heart, we knew there would be some developmental delays, but I was prepared not to worry until he hit the 15-month mark.

To this point, he has been ahead of her in gross motor skills and behind her in verbal and intellectual skills. The boy hardly speaks more than "mama" and "dada," but he crawls around the house with the speed of a German soccer player advancing toward the goal.

The other day, I left the baby gate open and turned my back for a second, only to hear my wife yell, with some urgency, a very loud “Brian!”

Now, when your wife yells at you like this, you know you are in trouble. Either you did something wrong, or one of the kids must be rushed to the hospital.

In this case, the angst in her voice was meant for me.

“Tyson just rounded the corner of the bathroom up here while I was getting Sydney ready. He climbed the whole staircase by himself. I don’t need to tell you what could have happened if he had lost his balance!”

No, you don’t. While one part of me was proud of his ability to climb 12 steps straight up in the time it took me to wipe mayonnaise off the kitchen counter, the other part of me knew that had he gotten to step 10 or 11 and somehow lost his balance, well, we’d be taking that trip to the hospital or planning his funeral.

Of course, I felt guilty. Of course, my wife was happy to increase my sense of guilt. That’s what marriage is all about, right?

But he survived and, now, only a few days past the 14-month mark, he is walking like a drunken sailor.  His head has regular appointments with the floor and any other object within three feet, but, by God, he is walking. And there is no slowing him down.

While Sydney likes to page through a book, he likes to tear a book to pieces. While Sydney will occasionally get wrapped up in intently watching a television show, Tyson prefers to have it on in the background while he walks laps around the house. While Sydney will sit on the bed and let her daddy read to her, Tyson will attempt to dive off of the bed head first – numerous times.

First steps and first shits (in the toilet.) That's life in the Gregg household.

Consider me blessed.

Tyson the Warrior Turns 1

That picture tells it all.

Look how far my boy has come.

Tomorrow, he turns 1. With apologies to Mr. Dickens, the past year has been the best of times and the worst of times.

One year ago tomorrow, we nervously awaited the arrival of our son, Tyson. The excitement was nothing like we had experienced not even two years earlier, when Sydney arrived. This time, our stomachs were queasy at the thought of bringing our new baby into the world.

Can you imagine something so exciting being so dreadful? My wife was going to give birth to a beautiful baby boy whose life would be at risk from the second he left the womb.

We knew a few months ahead of time he would be born with a significant heart problem. The doctors told us there was a decent chance he would need life-saving surgery upon his arrival. They also told us he would require another heart surgery about 4-6 months after his birth if he was going to survive.

You can read about the drama in my earlier posts. We were ecstatic when he didn’t need that immediate surgery. We were heartbroken when he struggled to eat and develop normally and we slowly realized he couldn’t wait 4-6 months for surgery and they were going to operate when he was smaller and more fragile than they wanted. We were emotionally scarred when we turned him over to the surgeon with fear we’d never see him alive again. We were elated, then shocked, then ecstatic when he made it through the surgery and began to recover.

One year later, Tyson is leading a pretty normal life. His scar is still jagged, but fading. He still takes heart medicine every day. He’s very underweight because, prior to his surgery, drinking a bottle of milk was like running the Boston Marathon and he really never developed a like for it. 

 

But those are the only signs that he is what they call a “heart baby.”

He goes in for a complete checkup next week – his first one since last fall -- and we will see how his heart is doing. We are obviously hoping for complete healing and no further surgery.

Tyson’s biggest obstacle since heart surgery has been his weight. He had a feeding tube for the first seven months of his life. Since then, he’s had a feeding regiment of supplemented breast milk or formula six times a day. We wake him three times during the night (10:30 p.m, 2:30 a.m., 6:30 a.m.) and force fortified formula into him, often against his will.

Even with that, he struggles, especially now that he is mobile and burning calories like a Hummer burns gasoline. He should weigh about 22 pounds. He weighs slightly more than 17. That’s a pretty big deficit for a kid his age and we would not be surprised if he went on some specialized eating plan after this week’s checkup.

No feeding tube, please!!!

The Budster  --- his nickname -- is showing signs of improvement in this area. He eats solid food better than his sister. I really believe when he is able to eat anything he wants he will pack on the pounds. He seems to really like food. Let’s just hope he doesn’t like it as much as his daddy.

  

He is a bit behind in his development due to all the time in the hospital and other restrictions during those first few months. For example, Sydney could probably say a couple dozen words at 1 year old, while Tyson can't say much more than ma ma and da da.

He is, however, ahead of Sydney when it comes to moving. He isn’t quite walking, but he scoots across the floor like an Indy car driver and he can lift himself up to a standing position faster than a professional wrestler after a choreographed fall. He is always moving and loves to play the worm on the end of the hook when you are trying to change his diaper or get him dressed.

In fact, he is pretty fearless. He loves to be manhandled, flipped around and tossed in the air. He gets a good belly laugh from it.

He's a really happy kid. He wakes up with a smile on his face, giggling when he sees his dad emerge from the shower. It is almost as if he knows what he has overcome and he’s chosen to really relish every day.

He loves to watch his sister do just about anything and laughs at her like she is Jerry Seinfeld working a crowd.

Believe me, she is not that funny. But the Budster is high on life. As he should be.

  

Even his scar is slowly fading. I think it will always be a visual reminder, but I don’t think he’ll be embarrassed to take his shirt off at the beach.

The kid has come a LOOOONG way. And so have his parents. The highs and lows of the past year have been draining, but we have all that much more appreciation for him and parenthood.

I have tears welling up as I write this. I am proud of this kid. He has taken a real tough situation and kicked its ass. I remember those days in the hospital when he looked like the before part of the above picture. I cried at his pain. Now I cry tears of joy for his resilience.

Tyson is where he is because 1) he is one tough kid, 2) he had one awesome mother who wouldn't let him give up and exhausted herself ensuring he had everything he needed, 3) we live close to one of the finest children's hospitals in the world, and 4) the positive thoughts and prayers of friends, families and even strangers blessed him with healing power.

Brooke and I really didn’t know if he could make it, and the outcome has been much better than we anticipated. I really feel like I have a pretty normal kid and my dreams for the future are no longer tempered.

I know this can all change next week, or next year or when he becomes a teenager. His healed heart can tear and start to leak again. Or the altered anatomy might not result in normal function. But right now, he’s just a kid who carries around a 2-inch Old MacDonald character like it is his best friend. Or a tike who likes to crawl across the floor at warp speed, grab the remote from daddy’s hand and attempt to change the TV channels, all with a devilish smile on his face.

He acts just like his sister did when she was his age, and does things hundreds of thousands of other 1 year olds will do this weekend.

Normal is good. Normal is peaceful.

I think birthday parties for kids who don't know what is going on are silly, but even I admit tomorrow is worth celebrating. The Budster has come a long way.

Happy Birthday, Tyson. You’re a warrior.