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

70 Days...

The countdown is on...

In case you don't know, that means that we are only 70 days from Tucker's 3rd open-heart surgery. 

Back in March 2010, when Tucker had his 2nd surgery, this 3rd procedure seemed so far away. Now we are just over 2 months away. He will have his pre-op heart cath on May 22nd. During the heart cath they will check his heart and the pressures in his blood vessels to make sure that his body is in good shape for surgery. They will also look at the anatomy of his heart to begin to plan for the procedure. The heart cath is a fairly simple experience and he shouldn't have to stay in the hospital overnight afterwards.

On June 17th we will go to the hospital for his pre-op physical exam, bloodwork, and meeting with Dr. Mendeloff, the surgeon. Tucker will also get to spend some time with the child-life specialist where she will explain the surgery to him and let him pretend/play in the mock operating room. Dr. Mendeloff will walk us through the surgery and answer our questions. Pre-op days can be very long, but it is necessary.

The next day, June 18th, we will hand Tucker over to Dr. Mendeloff for the 3rd time in his short life. He will stop Tucker's heart and complete the "repair". The 3rd procedure, the Fontan, involves completing the re-routing of Tucker's heart circulation to eliminate the mixing of oxygenated and deoxygenated blood. The recovery time can be a week or two or several months, this all depends on Tucker. We are already praying for God's blessing on this surgery and Tucker's healing.

So, 70 days...it will be here in no time at all!

The heavy stuff aside, I wanted to share a few things that have happened for us since my last post (which has been too long).

Finn is now 11 months old and growing and learning quickly. He is now crawling and cruising around the house pretty well. He also got tubes in his ears last month after too many ear infections!

Tucker continues to surprise us daily with something new that he has learned. He is very bright and after being tested by special education diagnosticians, has been deemed ahead in many areas, academically. We had him tested because we had observed some possible speech issues and also to establish a baseline for his cognitive levels in case there were complications with his surgery.

We had a great trip to the wildlife preserve in Glen Rose, Texas for Spring Break and also got to spend time with our family for Easter.

I'm sorry if this seems like scattered/rushed post, but its just what was on my mind tonight. Enjoy some pictures and video of the boys.

Wagon time

Tucker with his friend the zebra

Tucker - 10 months old                     Finn - 9 months old

Brotherly love!

Tuck & Finn - Easter 2013

Maddie, Tucker, Beckett, & Finn - Cousins

Tucker picking up his NASCAR tickets

Tucker's 1st NASCAR race

Ready to roll

Smiley!

Balloon boy

Crusing

Hope Made of Glass

I've decided to start re-posting blogs that I have written for other sites here, in case someone happens to stumble upon them. Below is one I wrote for Whole Hearts last month.

My family participates in the CHD support group at Medical City Children’s Hospital, called Amazing Little Hearts. Our group meets each month to share stories, hear doctors and others speak about CHD topics, fellowship, and support each other. Occasionally, we have an outside group come and speak to us about programs or special opportunities for our families.

Not too long after Tucker went home from the hospital for the first time, we attended a meeting that had one of these special guests. Two sweet ladies came to speak to us about a new program that was beginning at the hospital. These ladies shared the story and inspiration behind the Beads of Courage program.

If you aren’t familiar with Beads of Courage, here is an excerpt from their website:”The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.” Basically, kids earn beads for each test, surgery, procedure, needle stick, treatment, etc. and the beads are strung on a necklace for the child to wear as a testament to their courage and resilience.

Beads of Courage supports kids with cancer and blood disorders, cardiac conditions, burn injuries, Neonatal ICU stays, and other chronic illnesses. Each of these conditions has its own specific program guide that fits the treatment cycle of the condition.

Beads of Courage is now in over 140 different children’s hospitals in the United States, Canada, New Zealand, Japan, and the United Kingdom. Over 30,000 children are benefiting from this amazing program, with more being added each day. 

Since Tucker is only 3 years old, he doesn’t really understand his beads yet, but he definitely loves them and likes to look at them. The older kids in our support group do understand the beads and know that they represent needle sticks, procedures, and the pain that is associated with CHD. Despite the fact that the beads represent “bad” things, the kids love them and wear them like a badge of honor. They know that they earned those beads with their bravery.

Our kids go through so much in their fight with CHD, it is important to reward them when the days are tough. Beads of Courage is a perfect way to provide hope and comfort, even when it seems like the fight is just beginning. The beads also provide a tangible way for each child or family to their story.

Behind the program is a large group of donors and artisans who make the beads possible. Donors and organizations provide the funds to operate the program at local hospitals. There are scores of special beads that are made by skilled glass artisans. These special beads represent major milestones in a child’s treatment and are especially treasured items.

If your hospital doesn’t already have a Beads of Courage program, you can contact them through their website, http://www.beadsofcourage.org/, to find out how to get one started.

Just like Beads of Courage, Whole Hearts Foundation is trying to bring hope to the courageous kids and families battling against congenital heart defects. Our mission is to provide education, support, connections, and innovation to our families. Also, like Beads of Courage, Whole Hearts relies on the generosity of others to be able to reach these families. You can make a tax-deductible donation to Whole Hearts by going to http://www.wholehearts.org/HowtoDonate.aspx.

Each of Tucker’s beads tells a story. They tell a story of pain, surgery, and a broken heart, but they also tell a story of triumph, courage, hope! What is your child’s story? We would love to share it with the Whole Hearts family!

Baby Finn!

Finn's 1st minutes

Finley Thomas was born this morning at 2:44am. He weighed in at 8lbs 8oz and was 20.5" long. He is doing very well and eating like a champ. Dena is also doing really well. She is up and moving around, I'm very proud of her!

Finn's 1st morning

Finley in the afternoon

Tucker got to meet his little brother today and he seemed to like him, although I'm sure things will change when this weird baby comes to Tucker's home. 

We will probably get to go home sometime tomorrow, but I will update if something changes. In the meantime, we are at Medical City Hospital in Dallas.

Yes, Tuck, that is your little brother!

Giving sweet kisses

Tucker is holding his brother for the 1st time

 I have included some of the best pictures from today, enjoy!

newborn Tucker vs. newborn Finley, do they look alike?

 ~Trent

Almost FINN-ished!

This past Sunday, Dena passed the 37 week mark in her pregnancy. Finn is almost ready to make his appearance. In fact, we thought he was going to come two weeks ago.

In case you didn't hear, Thursday, April 26th during our monthly grocery trip, Dena started having regular contractions. We called the doctor and she wanted us to come in to the hospital. They checked her out and found that she was dilated to 1cm and having real contractions, so they kept us there for a while for observation. After about 3 hours, she hadn't progressed any further and the contractions had slowed, so they sent us home.

Since then, she has had some more contractions, but nothing regular, and she hadn't really progressed much more. Yesterday, during the weekly OB check-up, they wanted to take another look at the baby with ultrasound just to get a better idea of his size. It was not a surprise to us to find out that he is going to be a big boy. At 37.5 weeks, he weighs between 8lbs 10 oz and 8lbs 14 oz. At his point in a pregnancy, a baby will gain about .5lbs per week, so if he goes until the due date, he will be at or over 10lbs. 

Dena's doctor discussed the option of an elective c-section, but we don't really like that idea unless it is an emergency. She also made sure we knew that she couldn't induce labor until 39 weeks, which is on May 20th. When they checked her, she is now dilated to between 2-3cm, which is good progress. The baby still hasn't dropped, but she expected Dena to be "favorable" by sometime next week.

All that being said, it seems like Finn is about finished up and ready to make his appearance. He has huge checks, big, wide feet, and seems like he is going to be another clone of me. Oh Joy! Dena and I are both ready for him to arrive and I actually think Tucker is warming to the idea too.

Dena is going to continue working until he gets here, secretly hoping that some kid will send her into labor. 

We would appreciate your prayers for continued health for Dena and Finn. Also, for a quick, safe delivery when he decides to come.

I will update if something changes.

~Trent

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

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