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

Surprise...AGAIN

Well, today we learned why cardiologists don't usually use their ultrasound machines to determine the gender of a baby.

Today we had our final appointment with the perinatologist, Dr. Weiss, who looks very closely at the baby to make sure that there is nothing wrong with any part of the baby. He, obviously, looked closely at the heart and he also looked at all of the other organs, appendages, etc. He also took some blood from Dena to run some tests on it.

The doctor said that everything looked great with the baby. There are the proper number of fingers, toes, ventricles, blood vessels, eyes, ears, etc. Everything looked perfectly normal and he said that there was no way that the baby had HLHS. WHAT A RELIEF!!! It doesn't appear that we will have any scary surprises this time and we are very thankful!

Profile of the new baby

After he had looked at all of the important stuff, the doctor asked us if we wanted to know the baby's gender. We told him that we did want him to confirm it for us, but that one of the cardiologists had told us last week that she was 95% sure that it was a girl. He replied, "I will be the judge of that and then I will text her and tease her if she was wrong!" So he began to move the baby around and then he said, "Well, I guess I have to text her." Dena said, "WHAT?" The doctor replied, "It's a boy!" Then Dena said, "But the cardiologist said that it was a girl!" So Dr. Weiss said, "Well, if this is a girl, then she has a weenie!" I nearly fell out of my chair laughing! Then the doctor showed us the visual evidence that the baby indeed is a boy.

It's a Boy!

After leaving Dr. Weiss' office, we met with Dr. Thomas, Tucker's cardiologist, to look again more closely at the heart. Last week when he looked, he couldn't see a number of the things that he needed to look at, but today he could see everything. The baby has 4 normal ventricles, a normal aorta, no evident septal defects, and normal blood flow in and around the heart. That is about as clear and normal as you can get at this stage of development. He actually even said that he was confident enough in what he saw today, that we probably don't need to come back for another look. What a blessing!

As I mentioned last week, we were hoping for a girl, but, above all, we want a healthy baby. I think that we both felt like it was a boy deep down. Regardless, Tucker will be a great big brother and we can't wait to watch them grow up and play together.

I do want to say that we have no hard feelings about this surprise! We knew that the cardiologist is not an expert at determining the gender of a baby. She told us that she was pretty sure (95%) that it was a girl, but that she couldn't guarantee it. The cardiologists use different wands for the ultrasound machine than OBGYN's use, they are designed to look at hearts, not at babies inside the womb. The cardiologist also isn't as skilled at manipulating the baby to get good shots of the parts.

Now the hard part will be changing our plans. We will have to repaint the baby's room, but we won't have to buy near as much stuff, since we still have all of Tucker's old clothes and toys. The hardest thing will be coming up with a name. We have had a girl's name picked out since before we got married, but we don't have any ideas for a boy's name. With Tucker, we saw the name and just knew that it was right, but I spent a while earlier tonight looking at boy's names and none of them really sounded right to me. Right now, the only two names that we even remotely like are Case and Reed, but we definitely are ready to stop looking yet.

We hope that nobody else had purchased anything for a baby girl yet. We did receive a few girl things at Christmas, but nothing big. We apologize for the change, but I can assure you that we were more surprised by today's events than anybody, except for maybe the cardiologist.

So, let's try this AGAIN...Surprise...It's a...

We hope that everyone has a safe and Happy New Year!

~Trent