A Wish Come True!

Tucker's official Make-A-Wish packet

A big thank you to everyone who posted/shared/commented on social media sites, dressed up, raised funds, gave us hugs and high-fives, and all other forms of encouragement we received during CHD Awareness Week! It was incredibly humbling to see our Facebook news feeds FILLED with red on February 7th. Start planning for next year -- we'll wear the true colors of CHD awareness: red AND blue!!!

As many of you remember, at the Amazing Little Hearts Halloween party back in October, Tucker learned that he would be getting his Make A Wish dream: To meet Lightning McQueen! Well...the time has come! In just three days, the four of us will be boarding a plane to Disneyland, and Tucker will get his wish!

This day seemed so far away back in October, but now that it's here, the emotions are overwhelming. My baby, who has endured more struggles than most people will ever know, gets to "be a kid" and enjoy what life has to offer. No hospital beds, IVs, heart monitors, blood pressure cuffs, chest tubes, PICC lines, steri-strips, bandages, etc. He gets to do what all kids want to do -- be normal. Oh, I know he'll get nasty looks when we get special privileges or people will see our blue Make A Wish shirts and wonder "what's wrong with him," but none of it matters. As far as he knows, he's the center of the world for a whole week. And Trent and I will do and buy whatever he wants because he deserves it.

Tucker at his school send-off party today

Our bags are packed. The house is (mostly) clean. All of our affairs are in order. For one week, we get to be a family. For one week, we can forget about all the hard times. For one week, we get to make memories we'll never forget. Get ready for lots of posts in the next week -- we'll be sharing plenty of photos and stories!

We ask for your prayers for safe traveling. We also ask you to pray for the boys to have patience. We want them to have the best experience, but we don't want either of them to be so tired and frustrated that they can't enjoy it. Please pray that Trent and I stay focused on what's truly important and that we can be kids again too. Most of all, pray that we come home with no regrets, knowing that Tucker got everything he wished for.

Love and Mickey Mouse hugs,
Trent, Dena, Tucker, and Finn

Home Sweet Home To Me!

It is no secret that our family loves the Tennessee Volunteers and that we consider East Tennessee our second home.

At the beginning of September, we were asked if Beads of Courage could use one of Tucker's 4 year pictures in their campaign to encourage people to carry Beads when they compete. Of course we said yes and, after doing a little research, I decided that I would try to get the University of Tennessee to participate in the program.

I had a tremendous amount of luck in this effort and the UT athletic department was very interested in learning more and possibly having some players carry Beads of Courage.

Tennessee Team Beads of Courage

Fast forward to November, where Tucker was invited by Beads of Courage and the Vols football team to attend the last home game of the season as a representative of Beads of Courage. We didn't hesitate to pack our bags and head to Knoxville.

We arrived at Neyland Stadium after lunch on November 23rd for the game against Vanderbilt, the last home game of the year, senior day. We checked out some of the tailgate parties and Tucker danced to the music. About an hour and a half before kickoff, we made our way down to the stadium for the Vol Walk. We waited and watched as the coaches, players, cheerleaders, and band paraded past us ALL of them wearing Beads of Courage. Tucker got to "high-5" some of the players and coaches as they passed.

Tucker at the Vol Walk

After the Vol Walk, we were escorted through the player's tunnel and onto the field for pre-game warmups. We got to hang out on the sidelines while the players got ready for the game. There was music blaring and Tucker had a great time. He had a dance-off with Smokey, the Vols' mascot, and got to meet a few of the players. Michael Palardy, the kicker, came over and talked to Tucker for a few minutes during warmups. He knew Tucker by name and was awesome with him. Michael is definitely a favorite of ours from now on.
       

Tucker & Michael Palardy

Tucker telling Michael his age

We took a ton of pictures and made memories that will last a lifetime, doing something that not many people get to do. After warmups, we made our way to our seats to watch the game. It was a 7pm game and it was cold in Tennessee. By halftime, Tucker was very cold so we decided to watch the rest of the game from the hotel room. He was asleep before we left the parking garage. 

It was an amazing day for Tucker and for us. I don't think there is any doubt that Tucker is a Tennessee fan now and he sings "Rocky Top" almost daily.

The next day we traveled south to Whitwell, TN to see some of Dena's family. It was great to catch up with them and for Tucker to get to see where his Papa grew up.

It was a fast trip that covered a lot of miles, but it was worth every minute of it. We left Texas on Thursday afternoon and were back at home by Monday night.

We are very excited to know that every single Bead that was carried that night will give enCouragement to a child fighting CHD or cancer. Tucker's story helped make it happen and he continues to get to bless others.

Tucker meeting Smokey

Tucker & "The Real" Smokey

We are eternally grateful to Ashely from Beads of Courage and Antone Davis and the University of Tennessee Athletic Department for making it all possible. 

"Rocky Top will always be home sweet home to me!"

~Trent

It’s Just a Heart Cath…

It’s just a heart cath. I can’t tell you how many times I’ve heard that phrase come from the mouth of a heart parent. I can’t tell you how many times my wife and I said it in the months and weeks leading up to my son, Tucker’s (Hypoplastic left heart syndrome, HLHS), heart cath on May 22^nd.

A heart cath, or cardiac catheterization, is a procedure in which doctors insert a catheter and guide wire into a major blood vessel and move them until they reach the heart. Most heart caths originate in the groin and enter the heart through the femoral artery. Once the catheter is in place, the doctor uses a dye and fluoroscopy (real time x-ray showing movement) to get a very accurate picture of the heart and surrounding blood vessels. In kids with congenital heart defects (CHDs), heart caths are typically used as a diagnostic tool prior to surgery or to make smaller repairs. In Tucker’s case, the heart cath was used to make sure everything looked good in his heart prior to having open-heart surgery on June 18^th.

A few days before Tucker’s procedure, I found myself thinking about the phrase, “It’s just a heart cath.” To most parents, it wouldn’t be “just” a heart cath, it would be something big! To most parents of kids with CHDs, it is a fairly minor part of their treatment.

When you compare a heart cath, which usually is a one day affair, with an open-heart surgery, it’s not that big of a deal. But it really all comes down to a matter of perspective. Many CHD parents experience numerous surgical procedures during the course of their child’s treatment. Heart caths usually occur before these surgeries. Most don’t require an overnight stay in the hospital. There are, relatively, few risks involved. Heart caths are just part of the process, like echocardiograms and cardiologist visits.

To a parent of a child with a more “minor” CHD, a heart cath may be the only procedure that they ever have. Some heart holes can be repaired during a cardiac catheterization. To a parent of a heart healthy child, a heart cath would probably be a very big deal. Prior to having Tucker, if you had told me that my child would be put to sleep, taken to a surgical room, have a wire fed through the largest artery in his leg into his heart, and then have to remain completely still for several hours after waking up, I would have freaked out. Now it’s “just a heart cath!”

Perspective is an important thing. Things that are a big deal to one parent might be minor to another. We don’t always know another person’s story or experiences. Tucker’s HLHS is a more severe form of CHD than a simple hole in the heart, but that doesn’t mean that a child with that defect is any less important or significant than Tucker. His or her parents aren’t any less of a CHD parent than Dena and I. Many CHD parents get wrapped up in our world and we sometimes try to compare our lives to the lives of parents dealing with other childhood disorders. We get frustrated because childhood cancer gets more attention and funding than CHD research and prevention. But it’s not a competition. They are both tragic. The kids and the parents from both sides go to hell and back. Lives are lost to both. It’s all about perspective.

Tucker’s heart cath went very well. The doctor said that his heart looked as good as possible for a child with HLHS. The pressures in his heart and blood vessels were in the correct range and he was cleared for surgery. He was a little feisty when waking up from the anesthesia, but he recovered quickly. It wasn’t too hard to keep him still for a couple of hours, all we had to do was put on his favorite movie and give him snacks and drinks.

As we gear up for Tucker’s big surgery, it’s hard not to wish it was just a heart cath! He has survived and thrived after his first two surgeries and there is no reason to think differently about this next one, but it is still tough to prepare ourselves for it. When I start to feel a little overwhelmed about everything, I think about the families wishing for a surgery to fix their child’s problem or the families who are making funeral arrangements. I wonder if they would think, “It’s just a heart surgery!”?

Perspective…

~Trent