Celebrating 10 Years!
So many exciting things happening as we are heading into our 10th year for Mended Little Hearts of Evansville. When this chapter was born I had no idea what it would become. My hope was that children who have a congenital heart defect would never feel alone and be able to connect with others just like them.
In celebration of 10 years, my wonderful friend Alisann Shetler Elpers from Captured Studios Photography donated her time and services to make our Mended Little Hearts 10 year anniversary extra special. Follow us on Facebook, and please like and share our kiddos photo’s to recognize one mended little heart at a time! #mlhevv #mlh #rememberourhearts #1in110
The first picture that will kick off this wonderful anniversary celebration is a photo that as a child I dreamt about. A picture that without saying a word demonstrates more bravery and love then imaginable. The strengths pictured here is why Mended Little Hearts of Evansville was formed. Every child in this picture has a story, we appreciate your support over the last 10 years and the many years to come.
-Julie Stucki, Mended Little Hearts Founder
Kendon Michael Horn was born on June 28, 2012 at the Women’s Hospital in Newburgh, Indiana. He was 9 lbs 5 oz and 21 inches long. Although Kendon appeared healthy he was born with three congenital heart defects; a Ventricular septal defect (VSD), Atrial septal defect (ASD) and a persistent left superior vena cava (PLSVC).
At just one month old it was clear that Kendon would eventually need heart surgery. After numerous hospitalizations and the inability to thrive, it was clear that Kendon’s heart was failing and surgery was needed to survive. His family quickly reached out to Mended Little Hearts hoping to connect with other families like theirs that had been through a similar experience. Parents of other children born with CHDs like Kendon’s quickly reached out giving hope and support to his family in preparation for the weeks ahead.
Kendon’s little heart was mended on September 27, 2012 a day before he was 3 months old at Riley Children’s Hospital in Indianapolis, Indiana. The surgery was a success. The VSD and ASD were repaired. Mended Little Hearts was and is there as a support system to Kendon’s family and other families like theirs, offering hope and raising awareness of little hearts that need mending.
-Jason & Tiffany Horn
Meet Claire Ambrose! Her parents knew prior to birth she would be born with only one truncal valve and require open heart surgery to have a pulmonary conduit placed. She was delivered at IU Health and transported immediately to Riley Children’s Hospital. Claire was monitored in the NICU until she was 12 days old, the day she had her first open heart surgery. Six weeks later she was discharged.
She returned for a cardiac cath a month later to even out pressures in her heart, but post cath, and after a few months of continued minor complications Claire, now 5 months old, was headed back to Riley for her second open heart surgery. The surgery proved to be just what Claire’s heart needed and after only a 6 day stay Claire was home. She continued to do well at home and periodic follow-up appointments with her cardiologist at Riley showed her heart function was stable.
When Claire was 5 years old she underwent her second cardiac cath procedure to address narrowing in her pulmonary veins. The cath gave the anticipate results and Claire was back to annual follow-ups. All was status quo until her 8 year follow-up when it was determined Claire’s conduit was showing signs of calcification and nearing it’s lifespan. Just a few short weeks after her 9th birthday, Claire underwent her third open heart surgery.
People say heart kids are nothing short of amazing—Claire is a testament to that. She showed more strength and bravery than most adults would! Here’s to hoping her next surgery is many years down the road!
– Mark & Sandy Ambrose
Imagine being given a newborn baby and being told not to let it cry, that was our newborn experience. We found out at 22 weeks Easton had a heart defect and that it was TOF a week later. We have no history of heart defects, no known reason for his defect, and no idea why Easton was born with TOF. Luckily Easton was a good baby and was born with oxygen in the 90’s. As he grew, he grew quickly and it was too fast for his little heart, so we had to rush to Riley for an unplanned BT Shunt at two months old. We knew this would get us to a year with a full repair, and it did.
Last September he had his open heart surgery to repair the defect. He had a bit of a rough recovery, but we were home after a week and he’s been doing good ever since. Now we just have to hope his pulmonary valve grows with him.
Most people might believe the battle is over at the repair, but I’m finding this little warriors have to fight every day. Despite everything, Easton is affectionate, sweet, and meeting his milestones. He loves to laugh and giggle, he already has a great sense of humor.”
-Dustin & Candace Merritt
Ozzy was diagnosed in utero (around 27 weeks) with Transposition of the Great Arteries. We made plans to deliver Ozzy at IU hospital in downtown Indianapolis so he could be immediately transferred to Riley, stabilized, and prepped for life saving open heart surgery. Ozzy was born on the morning of January 23rd 2011. Ozzy stayed in the NICU at Riley until his arterial switch operation, which he was taken in for at almost exactly 48 hours old. The nurses took him just before 7am and it would be over 12 hours before we saw him again.
Ozzy’s surgery was successful, but his recovery was what his doctors called “particularly stormy”. He struggled with dangerous arrhythmias on and off. He went into kidney failure and in turn, suffered permanent kidney damage. Ozzy spent about 5 weeks recovering at Riley.
But if you saw Ozzy today, you would never know how tough the first few weeks of his life were. He will be monitored closely for the rest of his life by his cardiologist and nephrologist. And we will always be grateful for his healthy times and ready if something arises. Ozzy has a big personality and a kind heart. He is a great big brother to his three younger siblings. He loves all sports, (particularly the St. Louis Cardinals and Green Bay Packers) and to say he is active is probably a vast understatement! We love him so much and are so thankful for the team that saved his life at Riley.
-Nick & Cody
In June 2003 I found out I was having a little boy and very shortly after we learned he would need open heart surgery when he was born. Luke was born October 14, 2003 and was quickly rushed away the second he was delivered. Luke was born with Transposition of the Great Arteries (basically the plumbing of his heart was backwards). They gave him medicine to keep him alive in hopes for him to be stable to have surgery. Two days later he had an Arterial Switch operation. Everything went great and he had wonderful results!
In May 2005, they noticed the hole in his heart that they made to keep him alive, those 1st two days, was getting a little larger. So we opted to have it patched. The best decision we could have made! Having that hole patched has taken away most of his previous restrictions! In August 2019 he was able to become SCUBA certified (something he would not of been able to do with the hole still open)!
Luke enjoys golf, tennis, hiking, water & snow skiing, fishing, and SCUBA diving. Luke is also on track to Eagle in Boy Scouts this August. Looking at him, one would never guess he has had open heart. Happy anniversary & thank you Mended Little Hearts for helping us get through the rough times!
-James & Yvonne McCullough
15 years ago we found out that our son Kyle would be born with a heart defect. Hospitals here in Evansville did not have the resources to take care of him if he needed surgery right away. Kyle was born at Riley Children’s Hospital in Indianapolis. Kyle did not need open heart surgery at birth but did need a temporary heart surgery to get him by until he was big enough for open heart surgery.
Kyle was on oxygen for the first couple month of his life at home. At two years old Kyle had successful open heart surgery by Dr. Brown at Riley Hospital. Kyle had repairs to a double outlet right ventricle, complete AV canal and pulmonary stenosis. Kyle has a cow valve that will need to be replace when he is in his late teens or early twenty’s. Kyle has yearly tests to make sure he is doing well.
Throughout this process we were scared and worried for him because all we wanted was for him to be healthy and have a normal life. Kyle was born with CHARGE Syndrome, so he is faced with other hurdles in his life, which he is doing really well.
We came in contact with Julie from mended Little Hearts of Evansville and since then we have learned and met with other families that have gone through similar heart defect and situations as well. Having contacts like Julie and Mended Little Hearts helps settle our worries knowing that other kids and families have conquered the same things that Kyle has and will need to in the future.
-Andrew and Loren Watkins
Meet Gracie Lynn
Gracie Lynn’s story started way before she was born. She was desperately wanted for 12 years. She’s named after her sister (Charlotte Gracie-Lynn) who was lost 2 years before her birth to placenta abruption. The shock of hearing your rainbow baby’s heart sounds loud was unbearable. Dr Kumbar was called in to do an echo her second day of life. Then we were told to not worry. It may close on its own.
It didn’t take long to figure out that what they said to not worry about may just be worse than it seems. She was very tiny. Her colds lasted for nearly 2 months at a time. She wore the same clothes for 2-3 years. Her heart was so loud. You could feel it and hear it. Forcing us to never forget that one day we would have to leave her with a team of strangers to fix her heart. Yet we knew how blessed we were and that it could have been worse.
She was mended 2 weeks before her sixth birthday. Her terrible colds were no more. She grew and grew till she jumped on to the growth curve and made her way all the way up to 50 percentile within a few short months of being mended. She’s our amazing mended, rainbow baby, after 10 years of infertility and one placenta abruption. She arrived with a bang, kept us on pins and needles from day one and holds our heart forever.
-Larry & Crystal Ennis
Colton is a twin and was born on 03/27/2012. Prior to Colton being born, he was diagnosed with Atrial Septal Defect (ASD), Ventrical Septal Defect (VSD), Hypoplastic Left Heart Syndrome (HLHS) & Tricuspid Atresia. Colton has undergone four open heart surgeries, four heart catheterizations, tons and tons of Doctors appointments and too many Echo’s, EKG’s, and Ultrasounds to count.
We went from being terrified & googling everything we could, to being introduced to Mended Little Hearts of Evansville’s founder, Julie! We were immediately welcomed into MLHOE with open arms & so much knowledge. The meetings, fundraisers, conferences, etc. helped calm our nerves and put us in contact with families & children that had the same diagnosis as Colton.
Colton is now almost 8 years old and thriving. He keeps up with his brother’s, friends, and doing all of the normal daily activities of a 2nd grade kiddo. We are BLESSED. Like they always say, some people never get the chance to meet their hero, but I gave birth to mine!
Riley was born with Tetralogy of Fallot (TOF) and a Cleft Lip and Palate. Both diagnosed prior to birth. The required surgeries and care necessary for Riley’s first year of life proved to be a test of endurance for everyone involved. The typical Cleft Lip and Palate repair schedule had to take a back seat to his prioritized cardiac health. Several trips to Doctors in Indianapolis and Cincinnati were required to set the stage for Riley’s surgery schedule. After a diagnostic heart catheterization, the cardiologist agreed that he could have his first surgery to repair his lip at 5 months.
After a successful heart catheterization and lip surgery, Riley’s cardiologist believed it was time for his open heart surgery at 8 months old. Dr. Turrentine performed the repair in about 8 hours. The next several days were shaky at best during his recovery. It is believed Riley had an allergic reaction to the bypass machine as well as a stiff right ventricle that provided some added challenge. Riley did slowly improve on his own schedule and he spent 14 nights in ICU and an additional 10 in the heart center before we were sent home. A checkup a week later at his cardiologist revealed a problematic suture in Riley’s sternum. A quick day surgery performed by Dr. Turrentine again provided a quick fix though.
After a couple months of recovery from open heart surgery, his cardiologist signed off for his next surgery, a cleft palate repair. Riley again was a trooper and was in and out of there in 5 short days.
Riley is monitored by his cardiologist and will require a future open heart surgery to replace his pulmonary valve. This valve was removed by Dr. Turrentine as often required for repair of TOF.
Riley has had a lip repair surgery at 4 ½ years old and also had a bone graft to form a gum line just days before turning 9. At this time he will likely have 1 more surgery as he grows to continue the repair of his Cleft Lip and Palate.
Today Riley is a happy and healthy 9 year old thanks to God and a wonderful team of Doctors and Nurses who have provided for his care and countless prayers.
Mended Little Hearts has been a wonderful group during this unexpected journey, providing support, encouragement, and education to us from our very first meeting. The meetings and activities planned for the kids and parents provide an environment to share experiences and stories. It is great to see the kids together who have been given this road in life playing with each other knowing they are not alone in their journeys.
-Ryan & Tammy Hobby
Olivia Claire Groninger was born on Aug. 17, 2015. She was diagnosed, In-utero, late in the 2nd trimester with Tetralogy of fallot.
Olivia, is our fourth child but our second child born with a CHD.
Our second child, Isabelle, was diagnosed with HLHS & other genetic & health issues prior to birth. She passed away four short days of life. Being handed the news of another CHD diagnosis was extremely difficult and worrisome! Doctors and surgeons assured us that TOF , while complex, it is not as severe as HLHS and survival rates are much higher. All we could do was take one day at a time and hope and pray this CHD wouldn’t take away another baby of ours.
We chose to have our cesarean section back at the place that took such good care of us and gave us so much compassion with our first CHD child. That special place was and is C. S. Mott Children’s Hospital in Ann Arbor Michigan.
We loaded up our other two children, which at the time they were ages 5 and 1.5 years old and we made the long trek to Ann Arbor for all our pre-op appointments on Dec 11. We unexpectedly were admitted after the worst TET spell during her echocardiogram! Olivia had just turned four months old at the time of her first OHS on Dec. 14, 2015. After a few setbacks and all our holidays spent in Ann Arbor, we were finally released and returned home to Evansville on Jan. 11, 2016.
Olivia is now 4yrs old and doing great! We recently graduated from echoes every 6 mo to 1 every year! They are keeping an eye on her pulmonary pressures and muscle bundles for they may need surgical intervention in the future, but for now…. we are holding steady and watching her grow! We couldn’t be more proud of our little heart warrior! I am so thankful for the Mended Little Hearts chapter of Evansville-they help all of us heart parents feel less alone in this world of CHDs!
-Angela & Adam
Brody was born with Tetralogy of Fallot. He was delivered at Riley Children’s Hospital and had his first heart surgery there at only 4 days old. They placed a BT shunt to reroute his blood flow in order to provide his lungs and other organs with sufficient oxygen levels. He was heavily monitored and on numerous medications to allow time for him to grow and gain weight before attempting an open heart surgery for a full repair. Each month as he grew, his oxygen levels would decrease. When he was 6 months old it was decided the levels were too low and the full repair was needed. On December 27th, 2011 Brody had open heart surgery to repair his four major heart defects. This surgery lasted 8 hours and many days/nights in the hospital recovering. There were good days and there were bad days. He continued to be monitored monthly then quarterly.
At a normal routine checkup in May of 2013 with his then cardiologist, Dr. Julio Morera, it was found he had an obstruction with the out flow of his right ventricle. It was so severe they would not allow us to leave the office before speaking to Riley Hospital and scheduling an appointment. We were able to be seen right away, where after a heart cath procedure, the surgeons and cardiologist at Riley agreed Brody would have to have an additional open heart surgery to fix the obstruction. They had it scheduled within a week and we found ourselves again preparing for the worst. At this point Brody could talk, walk, eat on his own, etc. All of those factors made this surgery different and all too hard to have to repeat.
Having a CHD child, or any diagnosis of an “unhealthy” child is extremely difficult. Each stage, milestone, or sometimes day you get through is worth celebrating. Brody continues to be monitored at Riley and will need further surgical intervention in the future, but we will continue to live for today and be thankful for how far he has come. However, there will continuously be thoughts of what the next appointment might bring. The anxiety that exist leading up to these appointments is far too hard to explain. The feelings we’ve experienced through our journey will never go away and are something we will always fear. Brody has amazing strength and courage that I will never understand.
Our faith and support we received from family, friends, and through Mended Little Hearts was remarkable. I am extremely thankful for the relationships we’ve made here. MLH has allowed Brody to not be “different”. He has friends just like him and we have parents and friends that know exactly what we’ve been through. I am excited, honored, and blessed to share our 10 year anniversary with these amazing kiddos and their families.
-Matt & Zana
Paxton Matthew was diagnosed at 28 days old with Coarctation of the Aorta (CoA), PFO (hole in the heart) and a heart murmur. Paxton was born. healthy baby boy on February 10 and on March 10 he was airlifted via IU Lifeline to Riley Children’s Hospital to have surgery to repair his coarctation. Having to put my child’s life into the hands of complete strangers and on an aircraft that I wasn’t allowed to be on was one of the hardest things I have done as a mom.
On March 13 Paxton’s Coarctation was respired by the wonderful Dr Herrmann. Although there were some complications during surgery Paxton recovered well and after a two and a half week stay we were released home.
Paxton has had to have a heart cath 4 months later to stretch the scar tissue open. Since then we have had no more cardiac issues to note but we do know that another heart cath is in his future.
I was given the number of the Mended Little Hearts wonderful leader Julie by a co worker. I called her and told her our story and she helped put my mind at ease. MLH EVANSVILLE has been an absolute God send for me.
Today Paxton is a spoiled rotten happy go lucky little boy who is about to turn 3. There is not a single day that I don’t thank God for this miracle child!
Julie was born on July 13, 1977 at 11:59 p.m. We laughed because her doctor looked at the clock to make sure he had the time correct.
Julie had a pretty eventful first couple of months; however, her belly button wouldn’t heal so we made a trip to see her doctor and he thought that she might have something wrong with her heart. He drew us a picture of her heart and put a name to it – Tetraology of Fallot. Riley Hospital physicians had made a decision that they would start coming to Evansville to see patients on an out-patient basis. Julie was the first baby to be seen and we were so fortunate to get Dr. Roger Hurtwitz.
He wanted to see Julie at Riley for testing and when she was 8 months old we made a trip to Riley. They decided while we were there that they needed to do a Blaylock-Tunssing shunt on her and took her to surgery. The next day Julie was not doing well at all. Apparently they banded the shunt too tight and they told us that they needed to take her back to surgery and they told us to call our family in. It was pretty scary.
Julie had periodic checkups and they set up her repair when she was 18 months old. She did great. The doctor told us that we would see her for yearly exams and sent us on our way.
Fast forward to 2005 – Julie gets married in December. In January there was an article in the Courier and Press that children with Tetralogy were told they after their repair they were good to go, however, they were now finding out that wasn’t true. I called Julie and she called Dr. Hurtwitz who set up an appointment to see her immediately. This was the first time that we didn’t get to go with Julie – she took her husband and left her parents at home.
After tests he determined that she needed to be seen by Dr. Brown (who did her first surgery). He scheduled her for surgery in May of 2006. They did a valve replacement and she did great. She was in the hospital for a week. In 2008 she gave birth to a beautiful baby boy – Owen.
She had another valve replacement in 2018 and they did it on an outpatient basis. She had it one day and went home the next. Advancements have been made.
-Bud & Becky Heil