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

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

CHD Awareness Week - Day 1: FAQ

Today marks the beginning of CHD Awareness Week! Normally, Trent takes the honor of updating all of you and providing information about CHDs, but he asked me to take on the responsibility this year. My posts may not be what you've seen in the past nor may it be what you would like to see, but I'm just trying to share something new and important to me.

For Day 1, I saw this on the blog of a mother affected by CHDs and thought it might be interesting to use her idea of a FAQ session for those of you who might not know our story or still have questions about our journey.

Q: What do you want the public to know about congenital heart defects?

A: There are so many things, it's almost impossible to list them all. Perhaps the most important detail is that heart defects touch every 1 in 100 children. 1% may not sound like much, but heart defects are the number one killer of infants under the age of one. They are also more deadly than all forms of childhood cancer combined, yet they receive considerably less funding for research.

I also want people to know that there is no "cure" for a CHD. Yes, there are surgeries, but a child living with a CHD will always have side-effects. His/her stamina will never be that of a normal child. Simple illnesses like colds will always be more dangerous. Physical exertion, which stresses and ages the heart, will always have to be monitored and sometimes limited. Just because you can't see anything wrong with them doesn't mean they're "fine." They will never be "fine."

Q: What causes congenital heart defects?

A: I wish I had an answer, but I've been assured many times by many experts that even the most intelligent and experienced doctors have no idea what causes them. There are tons of theories, but none of them has been proven to actually cause heart defects, only to increase risks.

Q: Do you know why your son has a heart defect?

A: Not at all. I ask myself this same question all the time, but I have to trust that God had a plan for our family and that He knows why, but I don't think I'll ever have a definite answer.

Q: You said your son had two open-heart surgeries. What's wrong with his heart?

A: Tucker is missing one of the four chambers of his heart. The left ventricle, the largest of the four chambers, is responsible for pumping blood out to the body after it has come from the lungs and been cleaned up through the left atrium. Without this vital part of the heart (and a series of three life-saving surgeries), Tucker's body would suffocate and die.

Q: Does that mean that Tucker has a lot of restrictions on what he can do physically?

A: At this point in his life, Tucker has no official restrictions. Because he's not old enough to participate in sports, we don't have to limit him. If anything, he limits himself. When he starts getting out of breath, he stops running or jumping until he feels comfortable again. This will be something he'll have to self-monitor as he gets older, and only he can determine how much is too much. However, according to his cardiologist, he can do anything his body will allow him to do.

Q: How has Tucker's heart defect affected him?

A: It hasn't. He lives a very "normal" life. Like I said before, illnesses hit him a little harder, so we had a 4-day hospital stay Christmas 2010 for RSV, but we haven't seen any other direct effects. The most noticeable effects came at the very beginning of his life. Other than the difficulty of the first surgery, he had some feeding issues as a result of a temporary paralysis of his vocal cords. However, once the paralysis healed, the feeding issues disappeared -- and he certainly has his voice back!

Q: You said that Tucker's heart defect wasn't diagnosed until he was a day old? Can't heart defects be discovered during routine ultrasounds?

A: Many women do find out around their 20th week of pregnancy, but we did not. Those heart defects are typically noticed by a sonographer in the OB's office and referred to a perinatologist or pediatric cardiologist. We had two sonograms with a perinatologist (a specialist trained to look for abnormalities in fetuses), but it was never caught.

Q: How did you discover there was a problem?

A: Nothing seemed to be wrong with his heart until a lactation consultant who was working with us noticed he was breathing heavy and took him back to the nursery for observation. That's when the on-call pediatrician discovered a murmur (we later learned that feeding difficulties are an early symptom of a heart complication). At that point, we were told it could be one of three scenarios -- one being as simple as an in-utero artery that hadn't closed yet but could be treated with medication and the other being as complicated as an underdeveloped heart. We never imagined it could be the latter. For safety reasons, our delivering hospital decided to move us to a nearby hospital with more specialized resources, and shortly after we arrived there, we received the news that it was indeed the worst of the three scenarios and if we didn't get to Dallas immediately, we could lose our baby. With that statement, we were loading ourselves back into the incubator and ambulance for the final leg of our transport to Medical City Children's, where we later learned that Tucker was within 30 minutes of losing his life.

Q: How has this affected your marriage?

A: It certainly hasn't been easy, and we have questioned ourselves and each other more than once, but the struggle itself has shown us how strong our friendship and marriage was to begin with. There is no possible way we could have survived this nightmare if we hadn't understood how to comfort (and sometimes distract) the other person. I can't speak for Trent, but I can honestly say that witnessing his courage and resolve has motivated me to be a better person. In the chaos of the first few days, Trent threw himself into countless websites looking for information to explain to my feeble mind what was happening to the baby that I had just delivered, adored, and blamed myself for hurting. Additionally, and in no way am I trying to diminish the affect this CHD has had on our family and friends, there was no one else that could understand what it felt like to be in my shoes. Only Trent could understand what I was feeling, and I found comfort, peace, and respect in that fact. Those feelings continue now that we are expecting our second child. We are both experiencing the fear that comes with knowing our new baby has an increased risk, but we also know - beyond a shadow of doubt - that whatever happens, we did it once and we can do it again.

Q: What is the risk that the new baby will have a heart defect?

A: The chance of a CHD in any family is 1%. In our situation, the risk of another child with a CHD increases to 2%. However, we have been assured by our surgeon and cardiologist that it's very rare, and we have yet to meet a family that has more than one child with a CHD.

Thank you for taking the time to read the answers to these very important and common questions. If you have a question that was not addressed in this entry, please ask. We are more than happy to share anything that helps spread awareness and understanding of this complex and life-changing disease.

With heart hugs,

Trent, Dena, and Tucker

~Dena

A Piece of our Little Heart

You may not know this, but we LOVE Sanctus Real. When we found out that their lead singer, Matt, was going to have a son with HLHS, we went to their concert to meet him. We actually had never heard their music before, but we instantly fell in love with it. Even if you take away my friendship with Matt, I would still listen to their music. I have yet to find a Sanctus Real song that I didn't like.

All that being said, we listen to Sanctus Real fairly often. In fact, that is pretty much all I listen to in my truck because of Tucker. Every morning when we go to school and every afternoon when we go home, the first thing Tucker says upon entering my truck is, "Daddy...Tucker...listen...Matt...peese!" This is Tuckerese for "Daddy can we listen to Sanctus Real please?"

With all of that time spent listening to Sanctus Real, you can imagine that we know the songs well. We know them so well, that Tucker knows most of the words to the songs on their cd "Pieces of a Real Heart". He even knows the music without the words, he can recognize most Sanctus Real songs within 2-3 seconds of their start. Often times, if the music is low enough, we can catch him singing along in his sweet voice.

A few weeks ago, we were sitting around listening to music and we were actually able to catch him singing with the video camera on our phone. I have included the videos for your viewing pleasure!

Tucker isn't the only one who enjoys Sanctus Real. Since we met Matt, we have been to 6 of their concerts and have enjoyed them all. We will going to our 7th this weekend. Sanctus Real is wrapping up their tour with Casting Crowns and The Afters, so Dena and I are driving to Temple, Texas to see them. We are especially excited about this concert because Matt will be performing a song that he wrote for his son, Bowen, called "All of Me". We have seen him perform it before, but this will be the first time that we will see him share Bowen's story with a special slide-show going, and this will be a much larger crowd than usual. Here is Matt singing "All of Me" at the last concert that we went to, I know you will enjoy this:

In addition to the concert, Dena and I are taking the rest of the weekend to spend some time together. We will be going down to San Antonio after the concert to enjoy the River Walk. We are excited for a weekend away and are happy that we can leave Tucker to have some fun with Granny & Pops!

Thanks for visiting us and we hope that everyone has a great weekend!

~Trent

CHD Awareness Week - Day 7!

Heart Babies that we Love!

We appreciate everyone who stops by here to read our story, but we have other friends who need the support as well.  Below is a list of our friends (in no particular order) who happen to be going through similar trials as us.  Please pay them a visit and remember them in your prayers.

Bowen (HLHS) - http://bowensheart.com/

Liam (TOF) - www.johnsonheartbeat.com/

David (HLHS) - www.caringbridge.org/visit/babyhood

Ethan (TGA) - www.caringbridge.org/visit/ethankyle or http://aym4him.blogspot.com/

Maribeth (HLHS, adult) - www.maribethgillis.blogspot.com/

Grace (HRHS) - www.caringbridge.org/visit/gracecooper or http://cooperempire.blogspot.com/

Scott (TGA) - www.thefishpawfamily.blogspot.com

Greta (HRHS) - www.caringbridge.org/visit/gretas

Thomas (HLHS) - www.caringbridge.org/visit/babythedford

Nathan (HLHS) - www.caringbridge.org/visit/nathanweems

Jameson (HLHS) - www.caringbridge.org/visit/jamesonfinley

Jacob (several CHDs) - www.caringbridge.org/visit/jacobhayes

Emily (several defects) - www.caringbridge.org/visit/emily

Also, don't forget that we have updates just for Tucker at his page, www.caringbridge.org/visit/tuckerhamilton.

Thanks again for the support this week during CHD Awareness Week! I will be updating again tomorrow with some new pictures from this weekend.

With love & Heart Hugs!

Trent, Dena, & Tucker

CHD Awareness Week - Day 6!

7 Reasons We Are Happy to Be CHD Parents

1.  Because God loved, blessed, and trusted us enough to have a special baby with a special heart!

2.  Because his heart is half the normal size, which means we get to love him twice as much.

3.  Because through this process we have found out what great family and friends that we are blessed to have supporting us.

4.  Because we have made lots of new friends in the CHD community.

5.  Because through Tucker, we have been able to share an amazing story about God's unending love and the miracles that can occur with him!

6.  Because we are guaranteed to never have a "normal" or "routine" day.

7.  Because every time we see his scar, we are reminded of what a miracle and blessing ALL babies are to their parents!

To ALL parents who read this page: It is SO important to get your kids checked for CHDs, regardless of their age. Most defects are diagnosed at birth, but many aren't caught until later in life and that can be a dangerous prospect! Most athletes who die from sudden heart failure are found to have an undiagnosed CHD. Also, how many babies who die of SIDS actually had a CHD that was missed.

Don't know how to get your child checked? The easiest way is to use a pulse oximeter, which can be found at any doctor's office. It is a totally non-invasive test and only takes a few seconds. If you are expecting, you should INSIST on having your baby checked with a pulse oximeter immediately after birth and then again after 24 hours. If they had done this for us, Tucker would have been diagnosed much sooner. Tell your OBGYN to put it into your birth plan.

Here is some food for thought: The painful heel prick test that's standard for ALL newborns, checks for Phenylketonuria, affecting 1 out of 10,000 babies. Congenital Heart Defects are more lethal and afflict 1 out of every 100 babies, yet the simple, non-invasive, non-painful diagnostic tool, the Pulse Oximeter, which can help detect many CHDs, lies unused in the nursery.

Thank you to everyone who came out to the Blood Drive today, we had a great turnout!

With love & Heart Hugs!

Trent, Dena, & Tucker

CHD Awareness Week - Day 5!

7 People Who Helped Save Tucker's Life

1. First and most importantly, our amazing God and our lord and savior Jesus Christ (Philippians 4:13).

2. Mary, the lactation consultant in McKinney who first noticed something was wrong. If it hadn't been for her keen eye and quick thinking, we would have been discharged from the hospital and Tucker would have died in his sleep that night.

3. Dr. Reyes, the on-call pediatrician in McKinney who caught the murmur. Even though he is not our pediatrician anymore, we are still very thankful for Dr. Reyes, because he was the first person to recognize that the problem was with Tucker's heart.

4. Dr. Lucena, the neonatologist in McKinney who decided to send Tucker to Plano for further testing. If Dr. Lucena had decided to keep Tucker in McKinney for even 30 minutes longer, he would not have survived.

5. American Medical Response ambulance team, specifically Glen and Misty, for being so careful during transports to two different hospitals. Also, Misty kept us updated while they were working on a diagnosis in Plano and she was the first to tell us that something was horribly wrong. She could have waited and let the doctors tell us, but she knew that her gentle, motherly way would be better for us.

6. Dr. Tim Thomas, our pediatric cardiologist, for catching the true culprit and sending us to Medical City. He knew immediately that something was seriously wrong and made quick decisions that helped save Tucker's life. Since then he has become as much of a friend as a doctor to us. We thank God everyday for Dr. Thomas and his wonderful wife, Andrea!

Dr. Thomas with Tucker and Heart Friends

7. Last, but certainly not least, Dr. Eric Mendeloff, the amazing pediatric heart surgeon that fixed our baby's heart. Dr. Mendeloff is a master of his craft. He can repair hearts that are only the size of a strawberry and work on blood vessels that are only millimeters in diameter. He is also special because he is not like any other surgeon that I have ever met, and I worked in a hospital for 3 years. He is not arrogant, he listens to his patients and parents, and he uses his time and his money to support our group, Amazing Little Hearts...he is our "Rock Star"!

Dr. Mendeloff and Tucker

There are many more people who played a part in helping to save Tucker's life, not to mention all the people who helped us through the roughest of times and kept us sane!  We could not have made it without the love and support of all of our family, friends, and co-workers!

Thank you for keeping up with us and this blog and please take a minute to write something in the guestbook and/or share this site with someone else.

Our last event for CHD Awareness week is tomorrow. We are having a blood drive and party at Medical City Children's Hospital tomorrow afternoon.  The blood drive will be from 10am - 4pm and the party will be from 10am - noon. Please join us and help support our kids. Also, the blood supply in Dallas is dangerously low, so if you can donate, we REALLY need you!!!

With love & Heart Hugs!

Trent, Dena, & Tucker

CHD Awareness Week - Day 4!

7 BITS OF ADVICE FOR CHD PARENTS

1.  Ask for help!  It is hard to ask people to help you, but it is absolutely necessary. This and the next one were the hardest for me & Dena. It goes against everything we are taught to ask for help, it shows weakness, etc. There are thousands of excuses, but you can't do it alone! 

2.  Accept help that is offered!  People want to help and it is okay to take them up on the offer. In situations like this, people feel like they need to do something for you, let them! Whether you let someone bring you dinner, let them clean your house, let them do your laundry, let them give you money, or simply let them pray for you...accept it gracefully and humbly. They will appreciate and you will feel better!

3.  Join a support group.  You can do this only when you are ready. Some are ready before others, we wanted the support and friendship immediately. Amazing Little Hearts is a great support group in the Dallas area, you can send me a message for more information!

4.  Ask questions!  Ask lots and lots of questions. Make sure that you understand what is happening with your child. This is one of those times where there are NO stupid questions! If you need a doctor to draw pictures for you...ask, if you need a nurse to re-explain something...ask, whatever the question, miscommunication, or misunderstanding, asking a question can usually solve the problem.

5.  Speak up!  You know your child best. Sometimes you have to follow your gut and speak up. Doctors play a huge role in our children's lives, but they don't know everything. If something doesn't seem right to you or someone is not listening to you...SPEAK UP! If they won't listen, find someone who will!

6.  Appreciate your doctors, nurses, etc.  They are taking good care of your kids. They want what is best for your kids. Remember that they are people too, they have bad days, they make mistakes, they have real lives outside of the hospital or office. Make sure you tell them thank you, send them a card, tell their supervisor how good they are, be patient!

7.  Appreciate each and every day with your little one!  Some parents are not as lucky and don't get to have their kids with them, if you are in the CHD community, you know this is true! We all have friends who have lost their angels, so don't let the little things make you lose sight of what is most important! It is especially important to remember this when things get tough!

I want to leave you with another CHD poem:

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.

Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see her face…
They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.

Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.

Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…

Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect”.

Author - Stephanie Husted

With Love & Heart Hugs!

Trent, Dena, & Tucker

CHD Awareness Week - Day 3!

7 Ways You Can Help Fight CHDs

1. Donate Blood - Any time! Almost all CHD warriors need blood or blood products at some point during their treatment, most need it multiple times. Find out ways to donate with Carter Blood Care. Or donate on Feb 12, 2011 at Medical City Children's Hospital from 10:00am - 4pm! Amazing Little Hearts will be there, join us! Many people donated blood for Tucker when he was in the hospital the first time, but this is needed constantly, so donate blood as often as they will let you!
2. Donate Money - Research for CHDs is severely lacking, but the group doing the most for our kids is the Children's Heart Foundation. You can get more information about the Children's Heart Foundation and make a donation at www.childrensheartfoundation.org.  You can also donate to two local organizations that are doing great things for local CHD kids:  Amazing Little Hearts and the Chloe Duyck Memorial Fund
3. Support A Group - like Amazing Little Hearts! Amazing Little Hearts CHD support group works very hard to take care of our CHD families and kids we do many things throughout the year, like providing necessities and meals to families who are on a prolonged hospital stay and donating toys for the kids to play with while in the hospital. Find out more information about how you can support ALH at: www.amazinglittlehearts.com.
4. Become an Organ Donor - Check your driver's license. Is Organ donation noted? If not, sign up here. Click on 'Becoming a Donor'.
5. Educate Others - Tell everyone you know about CHDs and share our story and others' stories.  CHDs are devestating, yet many people don't know about them.  If you are expecting or know someone who is expecting, get the baby's blood oxygen levels checked immediately after birth and again after 24 hours.
6. Support CHD Families - If you are reading this, then you obviously play a role in supporting us and Tucker. You can find links to other CHD families in our "Resources" section. Make sure you leave us a message in the Guestbook when you visit, encouraging words are always great!
7. Find Another Cause - While CHD research and awareness are very important to us, there are many other noble causes out there. If there is another cause that is near and dear to your heart, support it!

Thanks for visiting us this week and thank you for helping us spread awareness for CHDs.  If you can possibly make it out to donate blood on Saturday, we would REALLY appreciate it!

With love & Heart Hugs!

Trent, Dena, & Tucker

Heart Rock

Dena and I were lucky enough to get to meet Matt Hammitt, the lead singer for Christian rock band Sanctus Real, back in May.  Matt and his wife, Sarah, found out that their son would have HLHS like Tucker early on in their pregnancy.  When Matt and his band came to Dallas in May, some friends of ours connected us with him so that we could answer his questions and give him support in this CHD journey.  We also got to see him in August when Sanctus Real was in town again.

The group on the tour bus with Matt

We have maintained contact with Matt through Bowen's hospitalization.  Tucker & Bowen not only share their heart defect, HLHS, they also share a birthday.  Bowen was born on September 9, 2010, exactly one year after Tucker.

Matt Hammitt

Through this friendship, we have found that Matt and his band are amazing musicians and songwriters.  Sanctus Real has quickly become one of our favorite bands and most listened to CDs in the car.  One of the amazing things is that their newest CD, Pieces of a Real Heart, is full of songs about suffering in Christ, about the heart, and about the love of a family...but all of the songs were written before they even knew that they were pregnant with Bowen.  Needless to say, the music on that CD has come to mean a lot to us and we make every effort to see Sanctus Real when they are nearby.

The Afters

Leeland

Friday night was one of those nights when they were in the Dallas area with their "Hungry for Love" tour, with Leeland and The Afters.  We got the opportunity to hang out with Matt backstage for about an hour before the concert.  A big group of our heart friends were able to come too, so it was a real blessing to get to spend time sharing our stories with each other.  Matt had a lot to share because Bowen had just gone home for the first time this week.  The good times were enhanced by Leeland Mooring working on some new music at the piano in the background.

Matt singing

The concert was awesome and we were introduced to the very talented band, The Afters, and Leeland put on a great show too.  Sanctus Real was amazing as usual and the crowd really got into it, especially after Matt shared Bowen's story.

Sanctus Real

After the concert, Matt invited us to hang out for a little bit with him on the tour bus.  We shared some more stories, offered some advice, had a few laughs, and then we needed to let Matt get some rest.  We found out some of Matt's plans to raise awareness for CHDs and we talked a little about planning a get together for all of us.  It is always great to get to share our experiences and have good times with the people who have/are going through similar things as we have gone through.

We continue to be blessed by the friendships that we have gained as a result of Tucker's heart defect.  God is definitely at work in our lives and we are happy to be used as a way for him to bless others.  Also, we are thankful for the music that God has brought into our lives...if you don't know Sanctus Real, you should definitely check them out.

Take a few minutes and go to www.bowensheart.com to read about his story and their experiences.  Matt is not only a great songwriter, he blesses me daily with his insights into the Bible and how it relates to the suffering associated with having a heart baby.

I'm going to leave you with a line from one of Sanctus Real's songs, that has become somewhat of an anthem for me in the last few months:
"I don't have every answer in life, but I'm trusting You one day at a time."

Trent

Last Lap

Me & Dena at Nationwide race

For those of you who don't know, Dena and I are huge NASCAR fans.  It all started when Dena's dad invited me to spend the weekend with him camping and attending a race.  I was never a really a fan before that, but a weekend at the track had me hooked.  The racing is great, but I enjoy the relaxation and camping just as much.  After my experience, I wanted Dena to go and she liked it too.

Needless to say, we became fast fans and have had season tickets and a camping spot at Texas Motor Speedway for the last four years.  Twice a year we haul our pop-up camper out to the track and spend 3-4 days camping, watching races, and spending time together...it's kind of our getaway time.

This past weekend was the fall Texas race and it just happens to be our last trip to the track for a while.  We have decided to take a few years off because we want to use the money we spend to pay off some bills and because it is hard to leave Tucker for 3-4 days.  We hope to return once we are out of debt and Tucker can come with us and enjoy it.  We will definitely miss our time there, but we know that we will get back there in a year or two.

All that being said, we wanted to make the most of our weekend together at TMS...and it couldn't have been much better.  It was quite cold at night in the camper, but the weather during the day was absolutely perfect!  The racing was great and we were treated to probably the best race TMS has ever had on Sunday.  We got to hang out with some friends, visit, eat good food, and have some quiet time for just me and Dena.

My favorite driver, Kyle Busch

Kenny Wallace, he drove a car with Tucker's name on it!

 

James, me, & Dena at the Sprint Cup race

Dena's favorite driver, Denny Hamlin, won the race!

We can't wait until we get to return!

Trent

Halloween...A little late!

We had a great time with Tucker this Halloween!

Tucker at daycare party

It was obviously more fun this year than last year, especially since he actually knows what is going on.  The entire weekend was very busy.  Tucker had a party at daycare on Friday, we had a party at the hospital on Saturday morning, we had to take our camper to the race track for the upcoming race weekend, we had a party at my cousin's house on Saturday night, and then church and the Fall Festival on Sunday.

Tucker & Daddy at hospital party

Tucker & Mommy at church Fall Festival

We had a great time with our friends and family.  It was a lot of fun to show off Tucker in his dragon costume.  We also took the opportunity to take some pictures of Tucker in the pumpkin patch at the Dallas Arboretum.

Enjoy the pictures from our great weekend!

Tucker at the pumpkin patch

Tucker & Daddy

Such a ham!

The family

can you tell that he was getting tired???

playing with Daddy

Sharing a flower with Mommy

The family at Fall Festival

Trent