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

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