Christmas 2012

Not ideal, but still special. Thank you to everyone at Arnold Palmer Hospital for making us feel "at home."

Tomorrow

This photo is of my cousin, Reagan. In her letter to Santa she elected to not ask for a video game, or an iPod, or something else digital and exciting. She instead asked the jolly old elf to fix Holden's heart. +


Reagan's wish comes on the heels of the unfortunate news that Holden would need another operation to help correct another issue in his heart. That surgery will be taking place tomorrow morning.

When my mom texted me that picture of Reagan I was 4 deep in line at Tijuana Flats. As manly as a I believe myself to be, I couldn't hold it in. As I tearfully gave my order, I just looked at the high schooler behind the register and said, "Tijuana black bean and chicken, and pardon me, I'm just a huge fan of the Flats."

The little man is doing very well right now, that is part of the reason for the quick turnaround between diagnosis and surgery. No sense in waiting for his health to decline to fix what they know they need to fix.

Reagan giving her Christmas wish to Holden is just one example of the MANY great displays of support that our family, friends, and even complete strangers have done for us. We don't think we can ever thank you all enough for the outpouring of support you've given us. Holden has bounced back so quickly from all his operations, we are sure that the same will happen here, no matter how unexpected and delicate it is.

When Holden comes home it will be the greatest Christmas/Hanukkah gift ever. (Putting that Nintendo I found under the tree in 1989 to shame).

Show your support tomorrow, wear a shirt, post his video, do whatever you wish. And most importantly...TEAM TIN MAN UNITE! GO HOLDEN!

-Trey, Nicole, and Holden

Halloween, Thanksgiving and All Sorts of Other Shenanigans

We're sorry we haven't updated this lately. Holden has gone super mobile. The days of simply placing the kid in one spot with the direct knowledge that he'll remain in that one spot are long gone. When you're not chasing the kid these days, you're trying to out think his 14 month old mind..."where, pray tell, is this kid going next?"

It's an impossible science, so I've developed a diagram to describe the situation.
 

We've had a busy few months though! Where do I start? (I'll warn you, this is broken down all nerdy like)

Happy Birthday Holden!

It’s hard to believe how fast a year goes. As a young child, we always looked forward to the joy that came with our own birthday. So much so, that the distance between the two dates often felt like a year on Jupiter rather than on the good ol’ home planet. As parents, we've quickly transitioned to looking forward Holden's milestones in the same manner. Today was one that seemed to come so quickly though.

Exactly one year ago, at 7:46 in the morning Nicole and I were blessed with the greatest thing that has ever happened to us. Born at what we’ve described several times as the “Flynn-friendly” size of 4 lbs 13 oz, Holden Joseph Flynn came packaged with a lot of unanswered questions, and a lot of promise.

Miracle Miles 2012

On Saturday September 22nd we had 117 runners, walkers, and crawlers invade Downtown Orlando. 5k, 15k, Kids run, it didn't matter, we were so abundant that race officials told me they always saw a member of Team Tin Man on their radar.

From what I was told by a couple friends, there were no zombies behind them to cause the crowd of people in front of them to run so fast. But everyone gave it a go and as a result, some of you were sore, beaten, battered on Sunday. That's what 5 or 15 Canadian miles will do to our bodies. In the end, everyone can agree, it was all worth it.

On top of all of our race participants, we had an unbelievable amount of donors. In all, 45 friends and family members from around the country donated to the the team. The outpouring was un-freaking-real. Our grand total was $16,229. Best by almost $13,000. The overall total raised for the NICU was $54,848.

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.

Gaining Weight. That's Not a Bad Thing

It's not often that one sees weight gain in a human being as a positive thing. We've become a society of thin-conscious ultra freaks that are constantly setting our minds to the latest fad diet and/or drug to help drop a few stones off the ol' frame. Hey, I'm just as guilty as the next person. In fact, I can only think of a few situations where we encourage weight game...(Why don't you name them Trey?) Don't mind if I do.

1) You're studying to become one of the purest sumo rasslers the Earth has to offer and only weigh 180 pounds.
2) Your identical twin and you decide to recreate THIS MASTERPIECE



3) If you're stuck on Gilligan's Island and are looking to build enough girth to plug the hole in the S.S. Minnow. (You know because all the wood, and such that the island provides is not worthy)
4) Your name is Marlon Brando. (Won him an Oscar)
5) Your Halloween costume is post blueberry Veruca Salt
6) The text on that box of Special K is FALSE ADVERTISING, and you're going to be the one to out it.
7) The size 38 Versace jeans you threw 4Gees on currently sits in your closet, 2 sizes too small.
8) The high school kid making minimum wage working the front of the line on a roller coaster says you don't weigh enough to ride.
9) You're Mary Poppins, and all you want to do is open your umbrella because it's raining
10) Your Wii Fit board doesn't register when you step on it.
11) You get folded up in the seat at the movie theater, developing a skin rash as a result.
12) Your cannon balls are so weak your 6 year old niece schools you.
13) People mistake you for Daniel Johns.
14) Man vs. Food has made you millions.
15) You've purchased a digital scale and want to see how high the numbers can go.
16) The 14th hydraulic switch on your pimped out Caddy has stopped working. That switch just happens to tilt the car towards the driver's side.
17) You've been treated to an all you can eat buffet featuring every part of the pig except the snout...okay, it has snout, but it's MINE.
18) Paula Dean
19) You want your daughter to be on Toddlers and Tiaras.
20) You're Holden Flynn and couldn't gain weight...until now

See where I went with that! Holden gaining at a record pace. He might be 10 EL-BE-ESSES for 5 months. Amazin' I tell ya.

Holden Update

Friends and Family,

I want to start this off by thanking ALL of you for your support. The cards, the phone calls, the texts, and pictures of you in sporting your Team Tin Man shirts. Everything. It has  all been so amazing, and I can't wait for the day that Holden can come around and individually thank each and every one of you. 

We got a big medical update this past Monday. Lets start by putting the good news out there. Holden's first operation was successful. He recovered very quickly, and is back to being everything he was before going under the knife. Giggling. Talking. Farting. Kicking the wind without a care. He's just really good at being a great all around kid. That being said, there are some issues. You see, it didn't completely address the problem at hand. Holden's lungs are still taking on more fluids than they should.

The first procedure placed a small band (think $1000 zip-cord) around the pulmonary artery by his heart. The artery controls the blood flow to the lungs, and the band by restricting that blood flow decreases the fluids to a level that you or I might have. As the doctors told us before surgery, it's an inexact science. The band was adjusted while Holden was sedated to the dickens, and your body tends to react differently when you're active, so it's a tough call. We were told that in about 20% of cases, they have to go back in to adjust the band.

It was apparent a few days after surgery that it wasn't working as well as the doctors wanted. The original belief was that he'd grow into his band, but that's not looking likely at this point. As his heart works hard to offset the excess fluid, he has plateaued, and his weight gain has struggled the last few days.

Unfortunately, we're in that 20%. There is only one option from here. Go back in and readjust the band. Yes, that means he's going to need the first operation again, it is necessary to get it right so can move on to the next stage of getting his ticker fixed. 

We're scheduled for Monday. Holden was admitted to the hospital yesterday to monitor his feedings, and to make sure he doesn't lose any more of those precious ounces before the operation. Fear not, he's under the care of some of the world's best doctors, nurses, and support staff. He's currently housed in a corner suite with the attention of a small army of nurses. This isn't what anyone wanted, but it is what is needed to fix the Tin Man, and that is what matters.

 Holden is a warrior. We witnessed a few weeks ago as he recovered from his last operation so quickly that he was out of the hospital two days earlier than expected.

Okay, maybe not THAT type of warrior, us Flynns tend to run a little bit smaller. How about this?

One final note:

It also happens to be National Congenital Heart Defect Awareness Week (through Valentine's Day). Join us by helping to spread the word! Wear red. Facebook, Twitter, or Google + if you're Dave Christino (just messing buddy, you tried to get people to join) about Congenital Heart Defect awareness. Anything you can think of!

We'll provide updates on the little man throughout the weekend, and all next week.

Thank you all again.

TEAM TIN MAN UNITE!!!!

Trey, Nicole, and Holden.

Holden Is Home: How Did I Explain Everything?

As many of you know Holden came home on Wednesday, bringing with him a few scrapes and bruises that easily could tell his story without words. He’s endeared, conquered, and moved on to the next phase of this process.

The kid is a champ, needing only a few microliters of Tylenol (WHAT THE HECK IS A LITER!?! I need it all in archaic medieval terms please! THAT’s WHAT WE LEARNED IN SCHOOL) to combat the pain, he loves being home. (And at least for mom and dad, away from the hospital) Truth be told, the kid doesn’t remember what happened. It has nothing to do with the fact that he’s 3 months old.  You see, the doctors gave him a mysterious amnesia drug.

Amnesia drug you say? Yeah, it’s a drug that not only knocks you out, but helps you forget everything that happened. It’s not quite as cool as the pen light Will Smith and Tommy Lee Jones toted around in Men in Black, but close.

To Holden, his timeline looks like this.

Awake --------------------(48 hours)-------------------à Ow! What the heck happened?

That means I get to fill in those 48 hours any way I want. You ask, how does one explain the cuts on his chest? Easily. What follows is my account of the 48 hours he was knocked out. He bought every minute, promise.

(Begin story)

Wanting a new life, one with a little less action, a little less stress, Holden moved to a small town in Missouri. It was one of those places where a stranger just doesn’t fit in right away, but far from the busy life that he had been wrapped up in for weeks. It was going to be easier on him, or so it seemed that way. In a town of a couple hundred people it’s hard to cause trouble, unless trouble comes looking for you. He was confident that it wouldn’t.

Holden took up shop as a bouncer at a seedy bar on the outskirts of town. It wasn’t a friendly neighborhood bar and grill as often pimped out in the Applebees commercials. There were no riblets. No under 500 calorie meals. No 2 for $20. No, this joint was visited by some of the roughest characters known to man. It was out of control. It was the type place that was perfect for him.

He knew a thing or two about bouncing. Most of his experience came as the doorman for a popular club in New York City. A trained fighter, Holden was once considered one of the best bouncers in the business. That didn’t matter in his new life. People didn’t know who he was, and he didn’t want to know who they were. At least that’s what he told himself. The owners only saw him as a hired gun anyway.

He befriended the only other guy who saw things his way, a man who looked an awful lot like Sam Elliot. You know the actor?! Anyways, this guy gave Holden the low down. He didn’t want to see this mysterious city boy get into more trouble than he could handle. He knew Holden wasn't used to this type of life.

It became apparent rather quickly that the area’s richest being, Brad Wesley, had a stranglehold on the day to day life of the town. By means of his massive wealth (estimated in the teens per year), he had the distinct ability to manipulate the residents via his extraordinary amount of henchmen, who followed his every step. For whatever reason they all felt threatened by Holden’s presence. He was a wild card. Someone they couldn’t control.  Things turned ugly fast, and while bouncing on evening Holden was forced to run out a couple of Wesley’s boys after they turned violent. Drunk and disorderly, they didn’t take too kind to his advice to leave and ended up in an old timey bar brawl. Able to hold his own, the men were ran off, but Holden was cut in the battle royal.  

Pain Don't Hurt

He looked defeated, this was unlike anything he knew in his previous life. Although he was one to usually avoid doctors and the sort, Holden needed medical attention. While awaiting in the small concrete room at the hospital, a stunning blond female walked in. It was the doctor. She was gorgeous. It’s tough being the town’s only doctor, especially when you once left it to pursue your medical degree. She knew of the outside world, but for whatever reason she couldn’t bring herself to return.

They hit it off, and while she was concerned for his well being in the light of the recent events with Wesley, he assured her everything would be okay. It couldn't have been further from the truth. Holden was invited to join Wesley’s gang to help further their exploits this small town. Wesley knew Holden would be just the type guy to help him achieve his ultimate goal. (To this day the goal can only be described as wanting the bar, which he could have easily purchased and avoided thousands of dollars in insurance claims and injuries, but why take the easy way out of this.)

Excuse me. You guys gotta leave.

Holden rejected these offers. You see underneath this rough and tough bar bouncer there was a heart of gold. That heart told him he couldn’t allow Wesley to exploit the people of the town he had resided in for a matter of hours. He knew he had to put an end to this abuse. Fighting back, Holden raided Wesley’s heavily guarded estate. Using nothing but his bare knuckles and his pacifier he found his way through it.

It seemed impossible, the numbers were out of control. But impossible was the way he liked it. Impossible was what led him to this town. The simple bouncer trained in martial arts overcame all odds and toppled the powerful villain.  He was bruised and beaten, but he was the hero. He won.

(The End)

His mom and dad by his bed, and a handful of pains littering his body, the couldn’t remember anything. His parents could though, and while it was some of the hardest days of our lives we had a supporting cast that was just unreal. Thank you to everyone for the thoughts, prayers, support, and even food you offered. It really means a lot to Nicole and I, and I’m sure Holden too.

We’ve got a long road ahead of us, but we’re ready.

Pain don’t hurt. - Dalton   

Holden's Journey Continues Tomorrow

Family and Friends,

Late yesterday Nicole and I received a phone call from Holden's cardiologist regarding his future. By all accounts the little man is doing very well. However, they want to move forward with the next step in this process. As a result, Holden will be having his first surgical procedure tomorrow morning.

It's tough. It was sprung on us very quickly, an answer needed in about an hour's time. Being understanding to our needs, the doctors did gave us an option of doing it at a later date to allow us to mentally prepare. The problem was, if we pushed it off, and Holden came down anything like a simple cold, it would all be delayed several weeks. By then his health could change. It's not a risk worth taking.

To lay out the procedure, it's the banding of an artery located by his heart. It will help slow the blood flow to his lungs and delay the second operation (known as the Glen) until we can get some more meat on his bones. (The poor kid is really trying to gain weight, I promise. He's got the metabolism of an Olympic sprinter!)

Of course we're scared beyond all meaning of the word, but we know it is something that has to be done. There is no alternative.

As parents, we've asked ourselves numerous times, "Will Holden ever be able to live a normal life?" The answer is yes. We're blessed with Arnold Palmer Children's Hospital  and one of the nation's top Pediatric Cardiology departments. The doctors have been fantastic to date and will do everything over the next few years to make sure we get his ticker on the right track. After spending the day there, and speaking with the surgeon we have no concerns about the care. Holden is in the right hands.

I was scouring the internet Tuesday and ran across a YouTube video. As I watched it, I broke down for the first time since learning of Holden's heart defect back in June. It wasn't grief, or pity, it was joy. The video is the story of a very strong girl named Anna went through the same procedures that await Holden. I came away from the video beaming with the same confidence she expressed. It is simply amazing!



As always, we thank you for your support. I don't think Nicole, I or Holden (who right now is nowhere near as scared as his parents) could get through this without any of you.

TEAM TIN MAN UNITE!

Trey, Nicole, and Holden Flynn