First Family Vacation

They see me rollin'

With Holden's surgeries behind us, we've finally been afforded a chance to just relax.There is no more worrying when the next operation will be. No more worrying about weekly appointments at the cardiologist. We no longer have to toss the kid on a scale every morning. No more intricate daily feeding logs. All behind us.

We took advantage of it. A few weeks ago, we packed up and headed to the east coast for five days of fun and sun in beautiful Cocoa Beach, Florida. It was our first vacation, a "family milestone" if you will. I quickly shot back to images of my own family vacations as kids. Complete chaos. We'd spend a week or so aimlessly driving around the Blue Ridge Mountains, stopping to eat at the Western Sizzlin and challenging fate on small mountain side dirt roads. They were so much fun.

One Year...

One year has passed since we learned our son was going to be born with a congenital heart defect. One year has passed since the doctor broke the news to two new, unsuspecting, naive parents. One year has passed since we laid in our bed, speechless, staring at the ceiling for hours, because we didn't know how to react. One year has passed since there were more questions than there were answers. One year has passed since we cried at the thought of our child needing surgery in the first few months of his life.

Today, we sit here at the hospital, Holden fresh off his third operation, doing as well as any kid could in his position. Back then it seemed like the end of the world. That seems so distant now. We couldn't be blessed with a better kid.

The Glenn Procedure

Holden, you're having surgery again. Don't tell your Mom.

Tomorrow marks anther milestone in Holden's heart journey. After a few weeks of NASA launch-like delays, the little man is finally set for his next surgery, the infamous "Glenn Procedure".

All in all, the Glenn is an operation that will tie off a few things to restrict blood flow to some of the lower areas of his body. (We really could launch into the intricacies of the Glenn, but we don't think you'd really would care to hear us attempt semi-intelligent doctor speak.) The goal is simple, assist Holden in his ongoing quest to gain weight. Today, sitting at a stout 13 lbs 6 oz, Holden is a far cry from that peanutty 4 lbs 13 oz baby that blessed us last fall, but is still a tad undersized, even for a Flynn.

We've been told that the effects will be seen almost immediately, and his overworked heart will scale it back a few beats, allowing his lungs to benefit. The doctor says that it will leave him looking blue for a couple days. We, like you probably are right now, began blasting images of this through our minds as that news was relayed to us.--->

I apologize for this corny, awful joke.

As we said in the Tin Man short, we know, no matter how intense these operations get, Holden is going to get through this. We stand by that statement. And while the anxiety and fear that comes with knowing our son is going under the knife will never subside, the negativity has. And always will.

Holden will be home in time for Father's Day. He'll pick right back up to where is he now. He'll return to sitting on his own. He'll continue to progressively drag his body across the floor like a snail (the experts claim this leads to crawling). And more importantly, he'll continue to forgo any other physical learning and demand his mom or dad hold his legs so that he might stand. (Someone forgot to tell Holden that standing was a few steps down the line, but he prefers the Franklin D. Roosevelt treatment.)

Funny story. The nurse at preadmission testing was trying to get Holden from a standing and into a seated position for his various tests. He insisted on standing, even though I tried to explain to him, that it's a progression for kids his age. Plank. Roll. Sit. Crawl. Stand. He remained standing for the anesthesiologist. And later, when we met with Dr. DeCampli, he stood and bounced. I said, "Can you believe this kid has a heart issue? He's been like this all day..."

It was only to stop him from crying at the hospital today,
but Holden choosing to stare down the pig who built
his house of bricks is a total metaphor. Right?

Thank you all for your support. Please keep Holden in your thoughts and prayers as the little man flexes his way through another operation.

Thank you!

Trey, Nicole, and Holden
(We will be updating Holden's status on Facebook and Twitter throughout the day. Please feel free to follow along)

Also, let me take this chance to remind you, we've got the Miracle Miles in a little over three months! Mark your calendars for September 22, 2012. Team Tin Man will dominate once again. TEAM TIN MAN UNITE!

Recap

This just in from the News Desk....Holden's surgery has been tentatively scheduled for next week. We have survived another round of scheduling meetings. Yes it was originally scheduled for this week but there are a lot of kids/babies already in the hospital that need surgery ASAP. This is bittersweet for us. On the one hand we had gotten in the mindset that surgery would be on Monday, then on Wednesday and had been able to wrap our heads around the fact our son would be having yet another open heart surgery...On the other hand he is healthy enough that they are able to push his surgery back. Holden had a cardio appointment this week and she keep saying how good he looked and how healthy he was, as he tried to eat the stethoscope from around her neck, so there's a feather in his cap. Thank you all for the kind words and prayers.

UPDATE: Surgery may now be in June, could be earlier, could be June...we wait

Last week's events:

Wednesday we attended the first meeting of the Mended Little Hearts, Orlando chapter. We met with other parents who's child has also had heart surgery and who have also heart the words "your child has a heart defect". It was nice to talk with other people who have been in our shoes and know how we are feeling and what we are going through.

Last Friday Holden was asked to be a special guest at the hospital for the American Heart Association's Heart Walk kick off. Basically it was all the team captains from last year. His video was shown and Trey and I were asked to say a few words. Holden was his usually self, flirting with all the ladies and hamming it up.

AHA Heart Walk Kick off- With Ann Ngo Heart Walk Dir

Pool Time

His mom put the Gilligan hat on him.

Note: This post was one I wrote for the website...LifeofDad.com. Dads, if you haven't joined, get over there now!

I’m generally not an anxious person, in fact, sometimes my wife will tell you I’m too relaxed. However, there were ten seconds last Sunday that almost got the best of me...We were dropping Holden into a pool for the first time.

It wasn’t that I feared my son would drown, or melt, or be allergic to water like the alien beings in Signs. My only worry was that my son would hate it. I didn't know how I would react if my kid went nuclear after touching the water.

6 Months Old! Just a Minor Observation

We are so out of tune with our surroundings. In today's iPhone and Facebook world a bear could waltz through our living room and we'd shrug it off to continue trying to figure out a way to make a "Beiber" on DrawSomething. Since Holden has joined our roster, that has changed. There are times when all that jazz takes a backseat to the most minute observations. The lights, lizards, noises that once graced our presence have returned. A rediscovery for mom and dad if you will.

I grabbed a tortilla chip out of a bag last night while holding the little guy. As the bag crumbled from my abusive handling of it, he stopped cold. Looked at the bag. Then me. Then bag again. I crumbled it again. Same reaction. I picked it up and handed it to him. ("cheega, cheega, cheega...") He attacked it, laughing as it made the crumbling noises we so often ignore. Basic cause and effect, so perfectly displayed by none other than an infant.

That is Holden at 6 months. Despite the small setbacks in his life, he's packed up the oxen and forded the river with best of them to discover anything and everything he can. While I probably would have complained about someone crumbling a chip bag in such a manner at a Subway or other high class establishment, I couldn't help but enjoy every minute of what Holden was offering me.

(“cheega...cheega...cheega”)

Trey

The Tin Man

As most of you know, Holden was born on October 11, 2011, the very Flynn friendly size of 4lbs 13oz. Shortly after, Arnold Palmer Hospital for Children came to us asking if we’d be willing to share Holden’s story with the masses. Nicole and I didn’t hesitate to say yes. We found a way to take a very tough situation and remain positive. It was important to us, and we wanted others who were in the same situation to know it is possible.

The creative mind, Jon Strong of Strong Films, recorded several hours of footage, everything from doctor’s visits to playtime. What became of it was a film unlike anything we’ve ever seen (granted, I’m a bit biased).

We know many of you have already passed this along to your family and friends. We appreciate everything each of you have done for us. If you haven't had the chance, please share it. Facebook it, Tweet, or whatever it. I can recall the hours before Holden’s first surgery in January, We stumbled across a YouTube video that someone else had put up. It was named “Anna’s Story“, and it chronicled the story a 10 year old girl who had same operations Holden would be going through over the coming months and years. We cried. Not because we were grieving over Holden’s condition, but because we were so excited to see that everything was going to be okay. It helped us so much.

Chances are, someone your friends or family might know might have just been told their child will be born with a CHD. We hope that this video has passed on the idea that there is a lot to be positive about during a tough situation. That positivity we’ve carried with us the last 10 months has been our GREATEST weapon.

http//:bit.ly/thetinman



Of course a BIG thank you to Arnold Palmer Hospital for Children and Strong Films for their work on this project.