Wishes for CHD Kids

Did you know that most CHD kids qualify for the Make-A-Wish program? If you didn’t know that, you are not alone!

Our local support group, Amazing Little Hearts, had a representative from Make-A-Wish at our meeting this past week. He shared about the program and answered all of the parents’ questions. Since not everyone is familiar with the program, I wanted to share what we learned with you. Hopefully, the information below will help you understand Make-A-Wish a little better and answer any questions that you might have.

• Any child between the ages of 2 ½ years and 18 years, that has a life-threatening condition, is eligible for Make-A-Wish. Children must be referred and determined to be medically eligible in order to participate. The final determination for medical eligibility is determined by the child’s treating physician.
• Most complex CHDs qualify as a life-threatening condition. These include, but are not limited to, Hypoplastic Left/Right Heart Syndrome, Double Inlet/Outlet Left/Right Ventricle,Transposition of the Great Arteries, Tetralogy of Fallot, Pulmonary Atresia, etc. If you aren’t sure if your child’s CHD qualifies, consult your pediatric cardiologist.
• Referrals for Make-A-Wish can be made by parents, doctors, nurses, and even social workers. Basically, anyone who has direct knowledge of the child’s condition and has a role in the medical care for the child can refer. MOST referrals are made by the child’s parent, but medical eligibility still must be confirmed by the child’s doctor.
• To refer your child, go to www.wish.org and click on the “Find Your Local Chapter” button on the top, right side of the page. Select your state and then find the office that is closest to your home from the list. Call the number and they will walk you through the referral process. You can also have them send you a referral packet in the mail, but the quickest and easiest way to refer your child is over the phone.
• Some of the information that they will need from you during the referral process is: Personal contact information for parents/guardians, contact information for the child’s treating physician (usually cardiologist for CHD children), general information about the child’s condition or defect, information on any upcoming surgeries or treatments, any physical limitations, handicaps, or special equipment for the child, and an idea of what the child’s wish might be.
• Despite what you might have heard, Make-A-Wish is NOT just for kids who are terminally ill. While children who are terminally ill may receive expedited services from Make-A-Wish, your child does not have to be dying to be able to make a wish. Remember, ANY child with a condition that has or does threaten their life is eligible for a wish. In fact, most children who are granted a wish go on to live happy, full lives.
• Most wishes fall into one of four categories: “I want to be…”, “I want to go…”, “I want to have…”, “I want to meet…”
• The average cost of a wish is $7,500. It is the goal of Make-A-Wish for a child’s wish to cost the family nothing and to have zero impact on the financial situation of the family.
• Make-A-Wish goes to great lengths to ensure that the wish that is granted is actually the wish of the child. They will have trained Wish-Granters meet with the child and ask, “If you could have one wish, what would it be?”

On a personal note, we got some great news last week. Our son Tucker, HLHS, has been accepted into the Make-A-Wish program. We are so excited for him, but also realize that we will be waiting for a little while for him to make his wish. Since Tucker is only 3 and he has his Fontan procedure coming up in June, it may be a couple of years before we meet with the wonderful Wish Granters. We want him to be able to truly pick something special for himself since this is a once in a lifetime experience. We also want him to remember his wish for the rest of his life. We believe that, in order to accomplish these two things, Tucker needs to be at least 5 years old before he makes his wish.

I hope that this information  has been helpful to you. Our CHD children go through so many tough times, they deserve the hope, wonder, and magic that comes with being granted a wish. I hope that you will take the time to refer your child to Make-A-Wish and that you will share this information with a friend who has a CHD child or any other life-threatening condition.

~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

Everything is Cooking

We hope that everyone had a great Thanksgiving!

Our week started out with a nerve wracking visit with the Perinatologist. For those that don't know, a perinatologist is a doctor who uses ultrasound to look at a fetus closely and take measurements to ensure that everything is going well with the pregnancy. We were more anxious than normal because of Tucker and because we saw a perinatologist twice with Tucker and she didn't catch his defect, even though she should have seen it.

Because of our previous experiences, we were not really sure what to think and very skeptical of any news that we received during our visit. The main difference for us was that this doctor came to us highly recommended by Dena's new ObGyn and by Dr. Thomas, Tucker's cardiologist. We thought that the doctor would be looking at the entire baby, but because of how early it is in the pregnancy, he could really only check for signs of Down's Syndrome. The good news is that there were no signs that the baby would have Down's Syndrome, they will confirm this with a blood test, results should be coming tomorrow. The "bad" news is that, while he did humor us and look at the heart, it was too early to see anything. We will have to wait until our next visit on January 2nd to look at the heart. Dr. Thomas should be at the next visit too, just to get a second set of eyes on the heart. We should also find out the gender of the baby on the 2nd too, so it will be a VERY big day!

The rest of the week was great! We spent a lot of time with my family and got to relax some. We also took Tucker to his first movie in a theater. We went to see "The Muppets" and Tucker had a pretty big time. He got his own popcorn, drink, and candy and got to sit in his own chair. He did okay, but got a little bored about 3/4 of the way through the movie. He love the songs and danced and clapped during the big finale!

Tucker at his first movie, The Muppets

Too much fun at the movies!

The other big thing on the horizon, besides the holidays, is that I'm about to start a new venture in life. As most of youI know, we are very involved in the CHD world as a result of our experiences with Tucker. For several months I have been working with Matt Hammitt, Bowen's dad, on the new Whole Hearts Foundation. I have been answering emails from new CHD parents, old CHD parents, families, friends, etc. I have also been in charge of the Whole Hearts facebook page. Whole Hearts will be teaming up with a new social network for CHD families, called Heartwaves.org. I have been asked to be a dad blogger for this new website. I am very excited about this opportunity. I hope that my experiences can help other dads and CHD families that are just starting this journey. I'm a little nervous about having enough to say and I will definitely have to improve upon my writing skills, but it should be fun! I will post information about my blog once we are up and running sometime in January. Right now, I've got to come up with a topic for my first blog entry, I feel writer's block already starting to creep in...oh no!

Tucker helping with the tree!

 I do have some more to say this week. Look for a post about our favorite group, Sanctus Real, and Tucker's love for their music!

As always, thanks for visiting and be sure to come back soon!

~Trent