An Exhausting Success

Hard work is...well...hard, but it generally pays off in the end!

I am happy to report that the Whole Hearts Foundation fundraiser event in Dallas, this past Sunday, was a great success!

 

After months of planning, meeting, recruiting helpers, inviting guests, and changing plans, the event went off without a hitch. 

We arrived at Medical City Children's Hospital at 10am on Sunday morning to set up and get everything ready for the guests. By 11:30, most of the stuff was ready to go, Dena just needed to put the finishing touches on everything, as she is so good at doing! Matt and his manger, Jenn, and two band mates, Chris and Mark, arrived to tour the hospital and Congenital Heart Surgery Unit. The tour was  very good and I was excited to get to hear and see a few things that I didn't know about at the hospital.

At 12:30, the tour was over and it was time for Matt to do a sound check for his acoustic performance. I knew that people would be there for the event because we had about 125 RSVP's, but the few minutes before it was supposed to start were still tense due to doubt. By 1:15pm we probably had over 100 people there to support us. At 1:30 I had to work up the nerve to step up to the mic and welcome everyone. It is so weird that I don't have a problem standing in front of a class of kids, but if you ask me to speak to a room full of adults, I get so nervous! 

Me giving my welcome

After I welcomed everyone, Devin Bruton, who is a hospital administrator, spoke a little about Medical City and then introduced Dr. Mendeloff (Tucker's surgeon). Dr. Mendeloff spoke for about 10 minutes and it was great. He shared about the past and future of treating CHDs and about the hospital's program. Finally, the moment that most were waiting for, Matt performed a few songs, including "All of Me".

Dr. Mendeloff speaking

Matt singing "All of Me"

Matt & Chris performing "The Redeemer"

It was so awesome to see everyone's reaction to the Whole Hearts mission and our plans. The support of the families and people there was surprising, to say the least. We were honored that Matt's band mates and manager took their time to join us. I was blessed to have some family and old friends who came to support us. Also, we had a few businesses that I had invited who came. 

The great crowd!

So proud of the group!

Honestly, it was probably one of the most involved, pressure-laden project that I have ever undertaken. However, it was totally worth all of the time and energy that was spent on planning, setting up, and putting it on.

I had a tremendous amount of help and support along the way. The event absolutely wouldn't have happened without my friends and "teammates" from Whole Hearts: Andrea, Matt, Brett, & Julie! Also, I had a ton of help from the people at Medical City Children's Hospital, particularly Devin Bruton, Amy Carlisle, and Jennifer Abrams. My brother, Greg, and his DJ partner, Dan, donated their services for the cause too, and that was a great help! Most importantly, Dena put up with all of the time that I spent planning and working on stuff. She also helped me make decorations, set up, and tear down. And the biggest job of all was single-handedly wrangling Tucker while I was busy at the event.

Greg & Dan with Matt

We ended the day by going to the Winter Jam concert at the American Airlines Center, where Matt's band, Sanctus Real, was performing with other groups. We had great seats and got to hear some wonderful Christian music. Tucker had a blast! By the time we made it home we were all exhausted. Tucker actually gave a little scare on the way home by having some sort of panic-attack or bad nightmare. Luckily, he seemed to be fine the next day. We aren't really sure what happened, but he hasn't had any more of those, so I guess he is alright.

I hope that you might consider making a donation to Whole Hearts to help us support families dealing with CHD. It is really simple to donate, just click this link: Whole Hearts Donation. The link is totally secure and 100% of the money will go to help families.

Thanks for listening and please share our blog is possible!

~Trent

Spring Break

We had a great Spring Break!

YOU are invited!

Before I get into all of our family stuff, I want to share an opportunity that is coming up. I have been planning the first Whole Hearts Foundation event for Dallas for months. The time has finally arrived to put all of that planning into action. Our Whole Hearts "social" and fundraiser is this coming Sunday at 1pm at Medical City Children's Hospital. It will be a reception in the atrium of the hospital and it will feature an acoustic performance by Matt Hammitt (Bowen's dad). He and his wife, Sarah, founded Whole Hearts and they will be sharing their vision for the foundation. All money raised at the event will go to support a special project at Medical City and heart families in Dallas. You all are invited to join us at the event, just RSVP to info@wholehearts.org to let us know you are coming. I have attached a copy of the invitation so you can see it. 

Tucker knows his ABC's

So, for Spring Break we took a short trip to Oklahoma City. We took Tucker to the zoo, which he loved, we went to Bricktown, and we visited the Oklahoma City bombing memorial and museum. It was a great little trip and we had a lot of fun and made some memories. You can read a little more about it on Tucker's caringbridge site here: http://www.caringbridge.org/visit/tuckerhamilton

Mommy, Tucker, and Daddy at "Pops" on Route 66

Can you tell he is ready to go to the zoo???

Tucker and his "pride"!

Tucker & Mommy having lunch at Leo's BBQ in OKC

The other big event for Spring Break was to get Finn's nursery ready. If you didn't know, the nursery was our guest room. It was painted the color of a Tiffany jewelry box and VERY feminine. This would not do for our new little man. We picked out some crib bedding after we found out it was a boy and it is red, white, and blue. The idea was to save the red and white stripes that were in the middle of the room and paint the Tiffany's blue to match the bedding.

I started priming the walls on Wednesday night and then moved on to the paint on Thursday. The top half of the room is light blue, almost like denim, and the bottom half is navy blue. I finished up on Friday afternoon, with some help from my mom and dad. There was only one mishap, a puddle of spilled navy blue paint in the middle of the beige, carpeted floor. After trying numerous things to clean the stain, I gave up and decided to up the stain with beige paint. It doesn't look great, but I think it will be okay until I can find someone who can patch the piece of carpet. See the before and after pictures below.

Before - "Tiffany's" room            After - Finn's room

It was a great Spring Break, not too busy, but not boring. Now comes the countdown to the end of school and the arrival of Finn. We are ready for the new little guy to get here and join our family.

Thanks, as always, for visiting and sharing our family journey with us.

God Bless,

~Trent

Survivors

Survivor - A person who survives, esp. a person remaining alive after an event in which others have died, also, a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

Tucker and his friends are the epitome of the definition of the word survivor, they are the physical embodiment of the concept.

We had the pleasure of attending and helping host our annual Amazing Little Hearts "Heart" party this weekend. Each year, we bring all of our families together at the hospital and celebrate our kids' lives, strength, and perseverance. We have a celebration cake, crafts, games, snacks, a blood drive, and tons of photos. More importantly, we have the opportunity to share our kids and our stories with each other and to show that we are not all alone in this life.

Our kids, our survivors, our miracles are so important to us and to each other. Many of our kids have survived a terrible malady that would have meant certain death only a few short years ago, Tucker included. As late as 10 years ago, the life-saving surgery that Tucker had was still considered risky enough that many families were told to just take their baby home and enjoy the remaining time that they had left with them. Yet, Tucker and his friends have found a way to defy the odds and live. God deserves the credit and the glory for this blessing, but it also shows the strength that can be found in a life that is only a few days old.

Sadly, too many kids don't beat CHD. Despite the numerous medical advances that have been made, CHD is still thee #1 cause of birth defect related deaths and twice as many children die from CHD then from all forms of childhood cancer combined each year. More money is needed for CHD research and for the support of these families.

While we celebrate our kids and their survival, we are ALL ever mindful of what could happen at any time. We honor our kids, but we also honor those who have not survived. Kids like Liam, Joshua, Ewan, and countless others, whose lives ended far too soon. We hope and pray that our kids can live lives that honor the memory of those who didn't survive. We hope and pray that our work, as parents, can change things for those that come after us and that we can help them deal with this tough battle.

Dena and I pray each day that Tucker will grow up and appreciate the life that God has blessed him with and that he will have a heart to give back and help others. We hope that our example can give him a love and a passion for this important aspect of being a survivor.

Tucker is a survivor for a reason. We don't yet know what that reason is, but we pray that God gives us enough days to find out.

We invite you to join Tucker and some of his survivor friends for dinner tomorrow night. Monday, Feb. 13th from 6-10pm at Durkin's Pizza, we are having a fundraiser for Amazing Little Hearts. Our group will get 10% of sales and that money will support the families at Medical City Children's Hospital. Join us for great food and an even better cause, the address is: 8930 Hwy 121 Suite 594, McKinney, TX 75070. There will also be a proclamation from Texas Rep. Ken Paxton for CHD Awareness week.

~Trent

CHD Awareness Week - Day 2

Dena posted about some FAQs that come up often for us as CHD parents. Tonight, I want to take a moment to share some things that I have been working on and some things that our friends have been working on.

This may seem like a "mailed in" post, but I just think that we can create awareness in many different ways and one of those ways is sharing what others are doing to fight CHDs.

First, I would like to call you to action and ask for your help! One of our dear friends, Jennifer Hood, has put her words into action and done something to create change in the world of CHDs. Jennifer created a petition to the U.S. government for increased funding for CHD research. We need 25,000 signatures before March 3rd and we currently have 185. It only takes a minute to sign the petition and it doesn't cost a thing. I'm asking that each person who reads this page, take a second, sign the petition, then share the link to at least 5 other people. This project could lead to countless lives being saved. If you would like to participate, just click on the following link and sign the petition: https://wwws.whitehouse.gov/petitions#!/petition/increase-funding-congenital-heart-defect-research-leading-cause-birth-defect-related-deaths/thjXMqzH. Don't forget to share!

Second, I would like to tell you a little about some things that I am doing for the CHD community. I have officially started working as the Director of Local Support for the newly created Whole Hearts Foundation, which was founded by our friend, Matt Hammitt, and his wife, Sarah. I'm working with families and groups, across the country, to coordinate efforts for CHD Awareness week. I am also helping to plan our Dallas fundraising event, which will be in March.

I am also working with, the newly created, Heartwaves.org website. Specifically, I am one of the dad bloggers for the site. My first two blog posts have been shared with the world, one of which happens to be on the topic of spreading CHD awareness. You can read my blogs by clicking on the following links: http://info.heartwaves.org/bid/122821/CHD-Awareness-Week and http://info.heartwaves.org/bid/120578/A-Congenital-Heart-Defect-Father . I would also encourage to read the other blogs that have been posted from a wide-range of bloggers, including Matt Hammitt, Tucker's Cardiologist, Dr. Thomas, one of Tucker's nurses, Holly Tomlin, and a couple of our CHD friends. You can see the rest of the blogs here: http://info.heartwaves.org/.

In addition to the blogs that are available on Heartwaves.org, the website also offers a patient page that is specific to CHD patients. Basically, the patient page combines the best of sites like CaringBridge with the greatness of Facebook. I foresee a time, in the future, when we will close this site down and just have Tucker's page on Heartwaves.org. It provides us with the ability to update family and friends, post pictures, and blog, but it also lets us have specific information about Tucker's heart defect, information from his doctors, videos, and many additional things. Heartwaves.org is going to change the lives of CHD patients and their families! You can create an account and visit Tucker's patient page by going to: http://www.heartwaves.org/.

Third, I would like to direct your attention to some others who are fighting this battle along side of us. These are friends and acquaintances and their thoughts and ideas from their blogs are an inspiration to us! Our friend Jennifer Hood, who created the petition, has an amazing blog where she shares the trials and blessings that come from raising a child with a CHD and other disabilities. Her strength and passion have helped us through some tough times. Pay special attention to her last 3 posts: http://fumblinggraciously.blogspot.com/.
Next, another local Heart mom has been doing some phenomenal writing this week for awareness. Again, pay special attention to the 2 most recent posts: http://heartofourjourney.blogspot.com/. The last one is a very poignant letter to her son's future wife and the one before that is a post that could potentially save your child's life!
I would also like to bring your attention to another friend of ours, Tara Johnson. Her son, Liam, was Tucker's roommate when he was recovering from his first surgery. Tara is also a great writer and she creates some awesome artwork. You can read some of their story and possible win a piece of her artwork by going to her blog: http://www.johnsonheartbeat.com/2012/02/chd-awareness-week-awareness-advocacy.html?showComment=1328762319717#c4707337685962556958.
Last, please take a minute to check out the blog of Kristine McCormick, whose daughter, Cora, passed away after 5 days of life because her CHD was undiagnosed. Kristine is single-handedly changing the world for babies. She is a driving force behind making pulse ox screenings required for all newborn babies. She is truly an inspiration! You can read about Cora and her mommy at: http://www.corasstory.org/2012/02/proud-parenting-moment-thats-my.html.

Finally, I would like to take a minute to invite you to our 2nd Annual CHD Week fundraiser on Monday, Feb. 13th from 6-10pm at Durkin's Pizza in McKinney/Allen/Frisco. It will be at the same location as last year, but just in case, the address is: 8930 Hwy 121 Suite 594, McKinney, TX 75070. The food is great and you will be supporting our Amazing Little Hearts group to be able to provide meals, snacks, care bags, and financial assistance to families in the hospital. Our group will receive 10% of all sales, so the more the merrier!

As always, thank you for taking the time to read our thoughts and ramblings. Please help us spread CHD Awareness and save lives!

With love & Heart Hugs,

Trent, Dena, & Tucker

~Trent

Orlando...minus the Disney!

Back in November I mentioned that I was working with the Whole Hearts Foundation. Since then, my involvement has greatly increased and my role has changed. I'm still answering emails that come into the foundation, but I'm not in charge of the facebook page anymore...praise the Lord! I loved communicating and connecting with the families on facebook, but I'm not a marketing or social media expert. I am so grateful that Whole Hearts was able to find someone who is doing such a great job in that capacity. I think the new person has updated more in the past 2 weeks than I did the entire time I was in charge of it.

I addition to my other roles, I have also been asked to begin working on developing a plan for local support through the foundation. This is a dream come true for me because I will have the opportunity to meet CHD families, provide support, connect them with other families, and assist in the development of new CHD support groups, like our own. I will be spending a great deal of my spare time working on this endeavour and I pray that God will bless my efforts and Whole Hearts will touch numerous lives. I am very thankful that Matt and the new President and VP of Whole Hearts are giving me this opportunity.

I also had the chance to travel to Orlando, FL to be a part of the first official Whole Hearts Foundation event this week. In hopes that we can begin to assist families and hospitals in the fight against CHDs, we have started a campaign to raise funds and awareness in several cities around the country. Each of our events correspond to the location of one of Matt's tour stops on the Winter Jam Tour with his band, Sanctus Real (http://www.jamtour.com/). Our first event was a luncheon in Orlando, which benefited the heart patients of Arnold Palmer Hospital for Children.

Before I left for Orlando, I met with the administration of Medical City Children's Hospital (our hospital) to discuss a partnership with them for the Whole Hearts Dallas event. I was really nervous about the meeting, even though I knew everyone at the meeting. It went really well and we hope to hear something from them this week about the event.

I left Dallas at 7pm on Wednesday night and arrived in Orlando at about 11:45pm (eastern time). I went right to bed, after getting to the hotel, because I had to be up at 5:15am. I met Matt and his wife, Sarah, in the lobby at 6:15am and we left for our first stop of the day, a radio interview. It was really great to finally meet Sarah, we've known Matt for almost 2 years and have talked to Sarah through email, but I hadn't had the opportunity to meet her yet. Matt did a radio interview with Z 88.3, the largest Christian radio station in Orlando at 7am, then we left for the hotel, where the luncheon would be held.

Matt doing his sound check

The hotel was something else! It was a one-of-a-kind! The owner built the hotel just to have a place to put all of the artwork that he had collected over the years. It looked like the Louvre! After arriving at the hotel, we had breakfast and Matt did another radio interview over the phone. Next we went upstairs so that we could see where the luncheon would take place and for Matt to do a sound check. We were all so surprised and impressed with how everything looked for the luncheon. We have been working on building Whole Hearts for a while and it just hit us that it was all becoming a reality. I looked at Matt and said, "It's real dude!" He responded with, "I know, I can't believe it!"

Sarah, Matt, Dr. Nykanen, & Me touring the hospital

From the hotel, we traveled a few miles down the road to the Arnold Palmer Hospital for Children. We had a tour scheduled of the hospital and the Cardiovascular ICU. The hospital was really nice and everything seemed to be enhanced with a little bit of the Disney touch. The lobby was decorated by Disney and I am sure that the kids love it! I learned a lot during our tour and I picked up some ideas that I will be bringing back to our hospital. One of the coolest things that we saw was the Music Therapy room. Joey Fatone, from NSYNC, donated the money for the hospital to have the music therapy room and a full-time music therapist. Patients in the hospital can go to the room and play guitars and drums, they can sing and record songs, and they can even make a music video. The therapist can also take instruments to the rooms for the kids to play there.

Music Therapy room at the hospital

After the tour, we had to rush back over to the hotel for the lunch and fundraiser event. Andrea, the VP of Whole Hearts welcomed everyone to the event and shared a little about Whole Hearts. Then the Chief Cardiologist spoke about the hospital and about CHDs. Next, Matt shared about the creation of Whole Hearts and then he played "All of Me" and "Lead Me". Last, the president of the hospital shared about needs that the hospital has and urged the business people in attendance to support Whole Hearts and the hospital. I was amazed that the event went so well and that we had such a great turn-out, especially since Andrea only had 3 weeks to plan and put it together.

Matt, Sarah, & Me at the Whole Hearts luncheon

 

Matt performing at the event

By this point in the day, it was only 2pm, but it felt like we had already done enough for a whole day, after all, we had been up since 5:15. When the event was finished, I had to say my goodbyes, because I had to go to the airport to come home. Matt & Sarah continued on to the University of Central Florida arena for the Winter Jam concert. I left Orlando at 4:30pm and arrived back in Dallas at 7:45pm. It was surely a whirlwind trip, I was only gone for about 24 hours, but I did so much in that time!

It is so surreal to think that all of the work is paying off for the foundation. God gave Matt & Sarah the idea and the platform to pull this off, then he put Chris & Andrea in the leadership positions for the foundation, now he is making everything come together at just the right time for us to be successful.

The Whole Hearts Team - Me, Sarah, Matt, Andrea, & Dickson

I had so much fun on this trip and I learned even more, but I was definitely glad to be home and see Dena & Tucker. I don't know if there will be more of these trips for me in the future, but I sure hope there are!

If you haven't already done so, please go to the Whole Hearts Foundation facebook page and "like" it, http://www.facebook.com/WholeHearts. Also, check out the brand new Whole Hearts website. If you click on each of the links and stay on the main page long enough, you might see someone you know:  http://www.wholehearts.org/!

Thanks for reading about my journey! I hope that you will join me in praying for the future success of the Whole Hearts Foundation. Our success will mean that hundreds of kids and their families will be blessed, supported, and healed.

~Trent