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

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

Surprise! It's a ...

We had a visit with Tucker's cardiologist, Dr. Thomas, today. As a heart parent, this is a very nerve-racking experience, especially when it has been 6 months since the last checkup. The good news is that Tucker's heart looked great and we are still on track to have his last surgery in Summer 2013. You can read more about Tucker's checkup on his site: http://www.caringbridge.org/visit/tuckerhamilton

The other bit of news we have is that, while we were at the cardiologist, we were given the opportunity to get a look at the new baby's heart. We were Dr. Thomas' last patient before lunch, so he had some extra time and asked us if we wanted to check on the baby's heart. Of course, we didn't hesitate or waste this opportunity, even though we have our next Perinatologist appointment next week and were scheduled for a fetal ultrasound then too.

Dr. Thomas took special care to look at each ventricle and all of the major vessels of the heart that were visible. He told us that he could only see about 60% of the things he needed to look at, but that all of those looked good. Specifically, the baby appears to have 2 normal sized ventricles and the aorta looked good too. This is such a relief because those are the two main parts of Tucker's defect, HLHS. He will look at the heart again next week more thoroughly and then we will go back for a final check sometime before 25 weeks, which we are currently at about 17 weeks.

I can't tell you how excited and blessed we are to have this news. We expected to check for these things next week, but we were beginning to get nervous about it. The one thing that was holding us back from being completely ecstatic about this baby was the fear of a repeat experience. It was actually quite emotional for us...Dena cried! We know that we can't be 100% sure of everything for a few more weeks, but we do feel better!

Finally, one of the other cardiologists asked us if we might want to check on the gender of the baby. Again, there was no hesitation...we certainly did! The baby was not in the best position to get a good look at the gender and the doctor is not an expert at determining gender, but she felt about 95% sure that the baby would be.

So for the news:

The bottom line for us is that we want a healthy baby. But, if we could pick which type of healthy baby, it would definitely be a girl. We have our little boy and we both felt like a girl would be a perfect fit. We already have a name picked out, we already have the guest room painted in a feminine color to become the nursery, and we think that Tucker will be a good big brother for a little sister!

This was a great day for our family! Tucker's heart looks amazing, the new baby's heart looks good, and we found out it would be a girl. We are blessed beyond measure! If we don't get anything at all for Christmas, this will be enough! Honestly, this news is the best present that we could have asked for, special thanks to Dr. Thomas for making this happen!

Thanks for stopping by and supporting our family! We hope that everyone has a great holiday and has an opportunity to love on your family. Remember that the reason we celebrate Christmas is because our God sent his only son to us, to die for our sins. It isn't about presents, food, or prosperity, it's about a tough situation that ended up saving our souls!

Merry Christmas & Happy New Year!!!

~Trent

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

Spring Break with Surgical Precision

Well, here we are, Spring Break, one of the joys of being a teacher!

The plan for this week was to relax a little bit and then spend several days camping at Lake Texoma...plans change!

Dena has been having chest and side/back pains for several weeks and after seeing the doctor, it was determined that she had gallstones. The only way to fix the gallstones is to remove the gallbladder. She met with a surgeon last week and they scheduled the surgery to remove it for today. This was not how we wanted to spend our Spring Break, but if it makes her feel better then it is worth it!

We checked in at Baylor Regional Hospital of Plano at noon today and her surgery was scheduled for 2:30 pm. The check-in process was not the most pleasant experience! Even though they called us yesterday to let  us know what to expect today, they failed to mention that we would be required to pay for at least 40% of the surgery today. When we checked in, they asked for the money and we were certainly surprised; no money, no surgery...THANK GOD for credit cards!!! I'm not sure when this type of expectation became standard practice for hospitals, but apparently it is very common, we just haven't dealt with anything like this before.

The surgery for removing a gallbladder is done laparoscopically. They don't make a large incision, they make several small ones and use a camera to see what is going on and small tools to perform the surgery. The procedure itself only took about 45 minutes. Dena did great through the surgery and everything went well. The doctor said that her gallbladder was basically useless because of the gallstones and that she would feel like a new person once she was recovered from the surgery. The hardest part of this procedure is dealing with all of the air that they pumped into her chest cavity to be able to use the laparoscope. Getting rid of the gases over the next week or so will cause some pain and discomfort, but she has dealt with it before and she will be fine.

While Dena was in the day surgery area waiting for surgery and while she was in surgery, I got to wrangle a stir-crazy 18 month old. We took toys and videos for the computer, but all he wanted to do was roam the halls. He didn't get a morning nap so he was very tired and this made things worse. Thankfully, there was a very nice man working in the waiting room and he found an empty consultation room with a couch where we could turn down the lights and let him nap. After about an hour of napping, he was ready to go again. He was actually pretty good, about as good as you could expect a toddler to be in that type of situation, but it is not something that I want to try again for a while! It was also helped by the fact that Dena's mother was there with me and then our pastor came too.

They started her surgery at about 3:30 and we were in the car leaving the hospital by 6:00. It is amazing that technology has advanced so much that Dena can have a part of an internal organ removed and go home from the hospital 3 hours later. She was nauseous and very tired after surgery, but she should feel better tomorrow. We made a couple of stops on the way home for some food and some pain medication. Bert and Barbara made a great salad for her and after dinner, she and Tucker were ready for bed. She will need to take it easy for several days, but should be ready for work next week. They actually said that the more she does this week, the easier it would be to get rid of the air in her chest and she would feel better faster.

So, as far as our camping plans go, we will see how she feels tomorrow and if she is up to it, we will head to the lake with the camper on Thursday. I think that she will be fine and she can relax at the lake like she can here. But if she isn't up to it, we will just spend some quality time here at the house.

The other BIG news that we have is that we have a team to participate in the 1st Annual HEART WALK in Corinth, TX! A national heart group, It's My Heart, is teaming up with Lake Dallas High School to put on the event. Our team, called Team HEART BUDZ, will be walking for Tucker and our buddy Ethan. We need people to walk with us and would love for you to join our team, you can do so by clicking here and selecting "Join Our Team"! The weather should be great and you are supporting a GREAT cause, so please come out and show your love for Tucker. If you can't come, but would still like to help, you can make a donation to our team by clicking here! Every dollar helps us reach our team goal of $500. Please honor Tucker by walking or donating and help us help other CHD families!

Thanks for reading the blog, leave us a comment to let us know that you were here!

~Trent