Caleb's Story

I met Lauren the week of P-man's birth, actually my mother-in-law met her first and then exchanged numbers. I was told she was new to the area, had a 2-year-old daughter named Kailey, and she was pregnant. She talked with my mother-in-law discussing her current OBGYN situation, and wanted some advice on what OB office was good. I didn't get the chance to meet up with her before I gave birth, but got the opportunity a week later. I needed to get out of the house, so we decided to go on a walk and take W to the park. Lauren happened to be there that day, and it was nice finally being able to finally meet her. She was so sincere and sweet and her daughter was just precious. She was telling me she was about 10 weeks pregnant, due in September, and this was her fourth pregnancy. Lauren had two previous miscarriages, one around 6-7 weeks, and one around 13 weeks (Godspeed baby Noah). She was telling me how nervous she was regarding her pregnancy, especially the dreaded 12 week ultrasound (that's when she found out about Noah's passing). Her 12 week ultrasound came and went and everything looked perfect. However, Lauren still felt uneasy and had this feeling something wasn't right. Her motherly instinct was proven correct, because her 20 week ultrasound revealed there was a problem with her baby's heart. Here is her story...

Caleb's Story
By Lauren Doblar

We found out about Caleb's heart at 20 weeks. That day was full of anticipation and excitement; we couldn't wait to find out the gender! Our whole world fell apart after the ultrasound, as I heard the words, "There is something severely wrong with your baby's heart." I'll never forget walking out of the dr office that day, tears streaming down my face. My happy 2 and 1/2 year old daughter was walking alongside me, holding her soon to be brother's pictures.

Caleb's diagnosis kept changing. First they thought it might be Tetralogy of Fallot, then TGA, and finally HLHS. I started getting echo's done at 23 weeks, and that is still pretty early to be able to see everything. One thing was for sure: his heart was complex, and not a textbook case of HLHS. As my pregnancy progressed, we knew of 4 defects for sure. We were told we wouldn't know everything until after his birth.

On September 27th, 2010 at exactly 39 weeks gestation, I went in for my induction at 8 pm. My doctor was willing to try for a vaginal birth, as long as Caleb did ok with it. I was already dilated between 2 and 3 cm. He sure made a quick grand entrance into the world! :) Just over 3 hours later, Caleb Thomas was born at a whopping 9 pounds 3.6 ounces, 22 inches long. He was perfect, crying, and pink as ever.


We learned that Caleb had HLHS, multiple VSD's, (holes in the heart) Coarctation of the Aorta, ASF-PFO, Large Patent Ductus Arteriosus, an arrythmia, and second degree heart block.

He was transported to CICU, was very stable, and on room air! His modified Norwood procedure was planned for when he would be a week old. But at 2 days old, Caleb's blood pressure was lower than they wanted it to be. After rounds of Epinephrine and calcium, and no results, it was decided that surgery needed to take place the next day. Caleb would be 3 days old.


We got the chance to hold Caleb for the first time, right before surgery. We had no idea it would be the last.


His surgery was between 5 and 6 hours long, and he made it through awesome! The surgeon came in afterwards with a big smile on his face. They were able to do what they intended, and he came off the heart bypass machine great. The next 24-48 hours were critical, and they would keep a close eye on him. We thanked him, and called everyone. We had no idea that our lives would shatter in a matter of two hours.


When we went up to his floor, we weren't let in to the unit. A nurse? Not sure... came out and said, "Things aren't looking good for Caleb." Those words are forever burned into my memory. That's all they said. They DIDN'T say, that he had gone into cardiac arrest, that they were working on him at that moment, that there wasn't much hope. We were told we could go back and see him. I couldn't move. I didn't know what was happening to my son, and I didn't want that as my last memory of my baby. My husband went back. Not even two minutes later, he came back to me. His face said it all. Our Caleb was gone. Just like that.

They said that out of nowhere, Caleb's blood pressure dropped, and his heart stopped. They worked on him for 33 minutes, but could not bring him back. After hours of holding him, we left the hospital that night, with the greatest heartache I never knew existed.

We chose to have an autopsy done, to try and get some answers about his sudden passing. Post op bleeding is believed to be what contributed to his death.

The loss of Caleb has forever changed my life. I will always cherish the 3 days that we were blessed with him. Knowing the outcome, I would do it again, no question. He can never be replaced, and the chance to meet him meant the world. Caleb will always be a part of our family.

In Caleb's memory, I have created Caleb's Comfort Project. I will be putting together baskets and sending them to those that lose their child to HLHS. My hope is to reach out to other families, and to offer support and comfort during their time of loss.

We will always love you, Caleb Thomas.

Caleb has been flying amongst the angels in heaven for almost five months, and his story and his family will forever be apart of me. Lauren is an incredible person with a beautiful daughter and a supportive and loving husband. She has taught me so much during this past year of knowing her. She has proven her strength by being able to show her support and love for the heart community. Lauren has started a project in Caleb's name and as soon as I find out more information, I will most definitely pass that along.

As I stated on Monday, I will be donating to It's My Heart in memory of Caleb. I never got the chance to see him, but I do get to see him in prayer daily. I know he's looking down on the his family and will forever be with them. There is no pain more far-reaching and deeper than losing a child. My heart and prayers continue for Lauren and her beautiful family as well as the other heart warriors taken way too soon.

**If you would like to read more about Caleb and how Lauren is doing, feel free to visit her blog: Caleb's Heart Story**

Landon's Story

In hopes to spread more awareness of Congenital Heart Defects, I have asked friends of mine if they wouldn't mind sharing their stories. On Monday, Amy shared Bodie's story, an almost 1-year-old heart warrior, who has HLHS. Today, I asked my friend Bekah to share hers. Bekah is another good friend of mine. We also meet on a mommy forum when we were both pregnant with our first. We have known each other for over four years now. I remember the day Bekah told us she was expecting their second child, and was just overjoyed with happiness for her and her family. As her pregnancy progressed, a routine ultrasound was performed, and at 27 weeks pregnant their world would be changed forever.

Landon's Story
by Bekah

The first hint of trouble came when I was 27 weeks pregnant. During a routine ultrasound, LJ heart was beating irregularly. Further monitoring confirmed that his heart was not beating correctly. I met with a perinatologist a couple weeks later when it was revealed that the right side of LJ's heart was enlarged but nothing further could be determined because of his positioning. A week later there it was....Ebstein's anomaly. "It's real and it is there." were the words of the Dr. It was revealed that I couldn't have LJ in my hometown as it was not equipped with pediatric cardiac care. I would have to deliver in St. Louis, MO (thank goodness that is where my parents and my inlaws live). A couple weeks later I went into preterm labor and was rushed to St Louis where labor was stopped but we were hit with another diagnosis...LJ had pulmonary stenosis. To make it a bit shorter, Ebstein's is when the tricuspid valve (found between the right atrium and ventrical) forms too low causing the ventricle to be small and the atrium to be large and the valve itself can be leaky or too tight. LJ's is leaky. Pulmonary stenosis is the tightening of the pulmonary valve (the valve between the right ventricle and the lungs.
Therefore blood was trying to leave the right atrium but was being sucked back in at the same time blood was trying to get his lungs but the valve wasn't big enough to allow it. The pressure in LJ's right side of his heart were dangerously high. Typically the younger this condition is diagnosed, the more severe the case. Typically when diagnosed prenatally there is very little chance of the baby making it to delivery and if they make it that far, there is even a smaller chance that the baby survives until the first year.

LJ was born on April 3, 2009, 4 weeks early, weighing one ounce shy of 8 lbs and only 19 inches long. He was whisked away. After a few days he went into for his first procedure. Through a catheter in his thigh, they inserted a balloon into his pulmonary valve to stretch it. The next day we were told we were going home!! This was unreal as we were told to expect at least 4 weeks in the hospital. LJ was home in time for Easter. We had follow ups regularly and at 3 months old, we were told his balloon procedure had failed. His pulmonary valve had closed back up and his pressures were back up.


July 5, 2009 Landon went in for his second ballooning procedure. July 6, 2009 a team of Dr's walked into his hospital room to inform me that the procedure had already failed. Landon was going to need open heart surgery. It was just LJ and I in the room after they left. I wept.

August 7, 2009 Landon went in for his surgery 7 hours behind schedule due to an emergency double lung transplant that morning. Landon made it through surgery well. They "remodeled" his pulmonary valve and left his tricuspid valve alone for now. A week after surgery, LJ was released.


February 2010. We were told that LJ's surgery was not as successful as they hoped. His pulmonary valve was now leaking along with the tricuspid valve. Another surgery before adulthood is definite. They can't pinpoint when but the words "he will just get really sick and you will know it is time..." is what I can remember clear as day. His next surgeries will be to replace with valves which will require repeated surgeries through out his life to maintain their function. Due to the enlargement on the right side of his heart, there is a chance LJ will need a pacemaker as the enlarged tissue can cause misfiring of the heart. It is hard to say just how many surgeries and procedures are ahead.

When expecting a baby, the last thing you ever think you will hear is that something is wrong with them. And to hear that it is your baby's heart that is broken is devastating. Landon is growing and thriving. Some even comment that you wouldn't even know that he is sick. There is no cure for CHD. There is no fixing it. These kiddos will also live with an imperfect heart. BUT, I can't imagine this world without Landon or the thousands of others going through what he has. He has definitely brought me to a completely different place in life and I know he has touched more people than I will ever realize.

Landon today

I also wanted to add, Bekah just recently graduated with a PhD in Chemistry. How amazing is that!? I don't know too many people who have taken care of a husband, toddler and a heart warrior while trying to finish their PhD. You go girl!

MOPS and Donation

This morning was a MOPS morning for the kiddos and I. MOPS is something I look forward to every other week, as it's a Christ-centered community group for moms.. We get to converse, eat brunch, participate in Bible Study, and learn new and different ways to improve ourselves as a mother and wife. The kiddos also enjoy themselves in the Moppets program.

Right before our morning prayer, our moppets coordinator, Nikki, was needing a prayer request. She was telling us about a co-worker who had just given birth to a baby boy. He has an extremely severe congenital heart defect, and wasn't expected to make it past birth. He is currently being treated in the CICU at Cincinnati Children's Hospital. Please keep this precious baby boy and his family in your thoughts and prayers. The mother is still in the hospital, and the father has been traveling back and forth from his wife to his newborn son. I will definitely keep you all updated if I hear anything more. Right after she told us about this brave little heart warrior, I stood up and mentioned the importance of this special week, Congenital Heart Defect Awareness Week. I gave everyone information on why it's so important for CHD to gain awareness, etc. I also told them about my plan to donate in memory of my good friend's baby boy, and told them about the non-profit organization, It's My Heart.

We also had a lovely couple, Steve and Loretta, from Marriage Works! Ohio come and speak to us. They spoke about the many tools needed to utilize marriage and relationship. Those being, relationship assessments, understanding personality differences, communication skills, conflict resolution techniques, intimacy & understanding the 5 love languages, and setting goals and achieving growth. Being a military wife, I have found that many of these "tools" have been placed in the back of the tool box. Both Jesse and I sometimes take are precious time together for granted and I learned how important it is to just have 16 minutes a day of our undivided attention. Once Jesse returns home from the middle east, we're planning on taking one of the Marriage Works! Ohio class sessions. I think it's very important for married couples, or any couples for that matter how valuable relationships are. Jesse and I are definitely looking forward to learning different ways to help keep that intimate spark alive in our marriage, even at the most darkest times(Jesse's upcoming deployment).

After Steve and Loretta spoke with us, Loretta sought me out to talk about Congenital Heart Defect Awareness Week and the organization I was discussing earlier in the morning. She then told me she would love to donate, and wrote me a $25.00 check to send to It's My Heart. It definitely brought a tear to my eye, because it made me feel like I was able to gain another supporter of CHD awareness. I thanked her from the bottom of my heart. I wish the world was full of more people like that. "You never lose by loving. You always lose by holding back."

Who is the Little Darth Vader?

Many of you all tuned in last night to watch the Green Bay Packers take on the Pittsburgh Steelers in the Super Bowl XLV. I'm not a huge pro-football fan, so I'm the person who is totally excited for all the great commercials. One commercial in particular caught the eye of my husband and I. It was the little boy dressed as Darth Vader trying to use his "powers" to make things move. At the end of the commercial a Volkswagen Passat drives up and Darth Vadar runs out to see if he can get his "powers" to work on the car. Lo and behold (of course with the help from the dad's automatic start), little Darth Vader was able to start the car with his "powers". It was an adorable commercial.

It definitely left you wondering, "who was the little boy behind the mask?" Today, on the "Today Show" the boy behind the Darth Vader mask was revealed. Not only was he an adorable little boy with blonde hair and blue eyes, but he also suffers from a Congenital Heart Defect. He was placed with a pacemaker at the young age of 3 months old at Children's of Los Angeles.

Thank you Lord for helping the doctors, nurses, and researchers save yet another life of a heart warrior.

Here is the story in case you wanted to watch:

Visit msnbc.com for breaking news, world news, and news about the economy

Bodie's Story

Today is the start of Congenital Heart Defect Awareness week and will run through Monday, February 14th. Throughout the week, I will be having three amazing women share their story on how congenital heart defects have affected their families. Along will their stories, I will be posting various CHD facts. I'm hoping the more people who read their stories and know more about congenital heart defects, more awareness will be spread.

Today, a friend of mine, Amy will be sharing her story. Her second child, Bodie, was born with HLHS (Hypoplastic Left Heart Syndrome), a very serious congenital heart defect. I've known Amy for a while now. We met on a mommy forum called, All things Parents. We both have 3 year olds, and baby boys similar in age. My heart broke for her when she told us about Bodie's heart condition, and I continue to hold her and her family very close to my heart.

This is her story...

Bodie's Story
By: Amy Bennett

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in.


He had his first open heart surgery, the Norwood, on February 22, 2010.



He had a fairly rough recovery, spending 3 weeks in the CTICU and an additional 2 weeks on the step-down floor, before finally coming home at 6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds by mouth (they were thickened), to the utter astonishment of all of his doctors and nurses. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.


3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. By the next day, he was satting in the 60's and they didn't know why, so they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor stepped in and decided to put Bodie on an external pacemaker. Within an hour, he turned around. A week later, he had his second surgery, to install a permanent pacemaker and take down his sano shunt and give him a BT shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed down to the cticu and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the cticu again in critical condition. He was again intubated and given medical support as they determined that he had an infection in his blood which turned out to be MRSA. He then spent 6 weeks in the hospital on iv antibiotics (5 of those weeks were spent in the cticu as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections).


The day he finished his antibiotics, he was discharged (July 21st)! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home! On September 13, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. Although he came out of surgery intubated and on nitric oxide (to help with his “twitchy” pulmonary beds), by all accounts the surgery was a success. He was extubated the next day and home 4 days later!

Bodie has been home since then and is thriving. He is gaining weight, growing teeth (and hair!) and LOVING life. He is a people person and loves to smile and laugh at anyone who looks in his general direction. He LOVES to eat, army-crawls everywhere, pulls up on anything in sight, cruises on furniture and loves to play with his big sister. He has PT to help him catch up in his gross motor skills, but other than that, is just like any other 1 year old. He is an absolute joy for us!





We know Bodie has at least one more surgery in his future, but we hope to get a reprieve from hospital stays until the Fontan (sometime between 3 and 4 years old), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS.

Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family. We could not be more blessed to have him in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love.

We love our little man and would walk this journey again in a heartbeat!

**If you would like to read more about Bodie's journey with HLHS, feel free to visit his blog: Hope for Baby Bennett**

Congenital Heart Defect Awareness Week

Tomorrow kicks off Congenital Heart Defect Awareness week. I've been a strong advocate for congenital heart defect awareness for a while now. A congenital heart defect is an abnormality in any part of the heart that is present at birth. Heart defects originate in the early weeks of pregnancy when the heart is forming. According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects. In the United States, about 1.4 million children and adults live with congenital heart defects today.

One very important thing to note in regards to funding, etc with The American Heart Association. Out of all the donations they receive annually, only $.30 of every dollar goes towards research for congenital heart defects. The remainder goes towards administration, education, and fundraising. From that $.30, only $.01 goes towards pediatric cardiology and the research necessary to learn more about congenital heart defects. Nearly twice as many children die from congenital heart defects in the United States each year as from all forms of childhood cancers combined, you would think there would be not only more awareness, but more research and funding.

In honor of my friends, Lauren, Bekah, and Amy, I'm going show my support, especially this week by helping spread the word on how important congenital heart defect awareness is. With their permission, I will be sharing each of their stories on how their families has been affected by such a devastating condition.

During Congenital Heart Defect Awareness Week, I'm going to be changing my Facebook picture to the Congenital Heart Defect Awareness ribbon. I want to also challenge each and every one of you to do the same. Feel free to use this image to show your support:


At the end of this week, I will be donating to the Columbus, Ohio chapter of It's My Heart. It's My Heart is a non-profit organization created to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. I will be donating in memory of Caleb Thomas who lost his life after three precious days from multiple congenital heart defects.

Please help by showing your support by spreading the word!

Important Links:
American Heart Association
CongenitalHeartDefects.com
March of Dimes
It's My Heart