Little Heart Warriors

This blog is for "Our" Little Heart Warriors, the reason behind this event. If you have not already, please visit our website at www.littleheartwarriors.org (website still under construction)

WARNING

The following bio's contain images that may be disturbing or offensive to some. Please use discretion while viewing. Remember that these children have been through major heart surgeries and the images are VERY REAL.

Evan

 Evan Dutton was born on September 25, 2008.  I was 41 weeks pregnant when the doctors decided it was time to induce labor. I had a perfect pregnancy with no complications so when Evan was born blue and rushed to the NICU, they concluded it was from the difficult labor. After 2 days of tests and no indications of any problems Evan and I were hours away from being discharged when a nurse thought she heard a heart murmur. The doctor wanted to do a final test before releasing us, it was nothing big he told us, and to come back in a couple hours. When my husband and I walked back into the NICU we could feel everyone looking at us and knew something was not right. The next thing we knew was the doctor was telling us that there was something wrong with our son’s heart and that there was nothing they could do. A helicopter from Loma Linda University Children’s Hospital was already called and on its way.

            When the transport team arrived from LLUCH they briefly told us that our son was born with Hypo-Plastic Left Heart Syndrome (HLHS), which means the left side of his heart never completely formed and only because of a tiny flap was he still alive.  As they rushed him out and we watched the helicopter leave with our son in it our world changed forever.

            The next day we sat down with a team of experts to discuss Evan’s case. They told us 3 options; transplant- which could be a waiting game and there was no guarantees, compassionate care- which we take him home and love him until the Lord takes him, or the Norwood procedure- 3 separate open heart surgeries that would redirect the blood flow by using the right side of the heart only, which because of how strong he was, THIS was their recommendation. After a split second of discussing with my husband and the doctors, we agreed to go forward with the open-heart surgeries. Dr. Razzouk, the surgeon, prayed with us that the Lord use him, to help our son. When Evan was 5 days old he had his first open-heart surgery. 9 days after surgery we went home, knowing we would be back all too soon.

            Evan’s second surgery was scheduled when he was 6 months old, and with a blink of an eye we were back at the hospital handing him off to the surgeon once more, not knowing if we were ever going to see his beautiful blue eyes again. Praise the Lord everything went according to plan and only after 4 days we were going home with our fragile baby again. This time, there were complications. Two days later, we came back to the hospital to find out that there was 4 oz of fluid surrounding Evan’s heart. It was putting so much pressure on his tiny heart and lungs they had to admit him immediately to drain the fluid.

            This stay was longer, a total of 3 weeks and another open-heart surgery before the fluid was no longer building up and we could go home once more. This time we got to stay home and in our little sanitary bubble until he was 22 months old.

            The final scheduled surgery, the Fontan, was on July 8^th 2010, and we were so terrified. Our little warrior Evan had been so strong but the “what-if’s” were tearing us apart. By the grace of God, the Fontan went well and 4 days later we were on our way home from surgery, for our hopefully last time!

            Evan is a wonderful, energetic, onery and stubborn little 3yr. old that has changed our lives in so many ways and made us better people because of him. He is our Warrior. Little Warrior Evan!

Lauren

Have you ever heard of the saying "It takes a village to raise a child"? Well it didn't take a village to help raise my daughter Lauren Hope but it definately took one amazing hospital. I found out at my 5th month ultra sound that my youngest baby would be born with a congenital heart defect. The doctor said it was Shone's Complex. A complex congenital heart defect that would require more than one open heart surgery, the first sugery would happen at birth. When most couples are planning a baby shower, I was searching the internet for medical terms, doctors and heart surgeons. So many emotions, so many questions. Would she survive? What do I tell my other children? 
I remember driving back from the hospital after a fetal echo,  and crying and asking "Why Lord?" What came tomy mind was Jeremiah 29:11 "For I know the plans I have for you Lauren says the Lord; plans to prosper you and not to harm you plans to give you HOPE and a FUTURE." This promise I have held on to all throughout Lauren's journey. I pray it over her daily.


     Lauren had her first surgery the Norwood at 5 days old. She had her next at 3 months and then the Glenn at 6 months. I will admit this time was a blur. It was a time of meds, feeding tubes, breast pumping and little sleep. I dont think I even add a chance to bond with Lauren much. I was on a mission. I was a mommy warrior!
It wasnt till Lauren turned a year that I finally let out a huge exhale and breathed. I could finally enjoy her, I could I finally let my guard down and I fell in love. 


     Lauren had her Fontan surgery in April of 2009. Things seemed different after this surgery, recovery took longer. She needed a stent, she couldn't wean off post surgery meds. Things just didn't add up. After many months of struggles and her body rejecting the last surgery Lauren's body finally let everyone know in October of 2010 that it didn't like the Fontan and something needed to change. Lauren was placed on the heart transplant list on Thanksgiving of 2010. It still feels like a dream sometimes. Praying and hoping for a new heart for your child, is so surreal. This is one situtaion you are never prepared for. Lauren waited for alittle over 4 months for her heart, and we stayed in the hospital for over 6 months. Loma Linda Children's hospital no longer was a place we visited for check ups, it was home. The doctor's and nurses were now friends no longer staff. Even the cleaning lady on the unit is now a close friend. Life in the hospital is much different than life on the outside. Literally you live moment by moment. I have seen things I hoped I never would. But at the same time I have seen God move in ways that I know man had no involevment in. Miracles do happen! I have seen them.   The day I heard the words " Mrs. Gentry we found a PERFECT heart" was March 3, 2011. Woohoo!! It's funny you think you will act one way when you hear those words but to be honest I didn't know how to act. Some of the words that come to mind are grateful, shock, joy, relief, praise, oh and by the way here comes the 9 hour surgery! Praise God Lauren did amazingly well. Again Miracels do happen!! This 1st year post transplant has been a year of ups and downs, but even with all the bumps HOPE feels our hearts and minds! As we just celebrated Lauren's 1 yr heart birthday she is happy, healthy and just look in her eyes and you see a girl who knows she has a sparkly new heart. Possibilty, that is what Lauren has. Her future is wide open! Our hearts are forver knitted together with our donor family. I cannot thank them enough for saying YES!

Dylan

Dylan was born in August 2011 and was diagnosed shortly after with Tetralogy of Fallot. We received a whirlwind of information and were confused and scared which is one reason why we are so passionate about spreading awareness. Dylan had surgery to place a BT shunt at 9 days old. We are expecting for him to have his full repair within the next few months. He has an older brother and an older sister whom he loves to play with. He is always happy and even when he doesn't feel good, has a smile on his face. God blessed us with an amazing little fighter!

Carlie

 In August 2005, my husband and I learned that we would be adding a second child to our family.  At our routine 20 week ultrasound, we found out that our baby would be born with a severe heart defect called Tricuspid Atresia, meaning that the right ventricle did not develop and that our baby would only be born with ‘half of a heart’.  On March 20, 2006, Carlie entered the world at six pounds two ounces, pink and screaming.  She remained stable for the first couple of days, but by day three, had taken a turn and had to be intubated.  Unsure of how Carlie would do in surgery, she went in for her first open heart surgery at just four days old.  Surgery and recovery went well and we left the hospital when she was three weeks old.  The next six months were a roller coaster as we dealt with many admissions because Carlie was in heart failure and because scar tissue in her aorta was restricting blood flow.  After two angioplasties, it was decided that she would need an aortic arch repair during her second open heart surgery, which took place in September 2006.  Surgery and recovery went so well, we were in and out of the hospital in three days!  Carlie thrived during the next several months and remained out of the hospital until January 2008, when she went in for her third open heart surgery at twenty-one months old.   Since her last surgery, Carlie has grown into a feisty, independent, strong little girl. She loves to dance and sing, playing dress up with her older sister, and Disneyland!  Our family has been blessed with such an amazing little girl, and we are so thankful that Carlie remains ‘healthy’ today!

Darryl

Darryl Edward Sanchez JR Born 8/09 was diagnosed at 1 day old with HLHS. His first surgery was 9/7/09 (Norwood). Darryl caught MRSA in his incision and had a feeding tube placed. Darrly underwent multiple procedures to remove infection and close his chest incision. He was released and came home on 12/15/09. Darryl's second surgery was on 4/8/10 ( Glenn). He was released and came home on 4/12/10. Darryl's third surgery was 1/17/12 (fontan). He was released to come home on 1/20/12. 
He is now a happy "normal" two year old . He loves playing outside and doing what a kid should do . He keeps up very well with his peers now . You would never know he has a heart problem unless I told you or you see his scars. <3 

Braedyn

Braedyn was born August, 2009 with an undetected Heart Defect. He was diagnosed with Tetrology Of Fallot with Pulmonary Atresia 5 hours after birth. Braedyn underwent his first open heart surgery at 2 days old and his second at 6 months old. Since his last surgery Braedyn has thrived and is a happy, healthy, loving and amazing 2 year old little boy. Braedyn will require additional surgeries as he gets older but for now he is "Loving Life to the Fullest" <3 

                                  

Alexis

Shortly after birth on July 18,2002, Alexis was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and Critical Aortic stenosis. If left untreated, HLHS is 100% fatal. A team of physicians informed me of our options; a series of corrective surgeries, a heart transplant or compassionate care (do nothing at all). After careful consideration and several meetings with Dr. Bailey, Dr. Kuhn and the cardiac transplant team, we opted for Alexis to be listed for a heart transplant.

Little did we know, Alexis had quite a fight ahead of her. She remained in the NICU at Loma Linda University Children's Hospital while she waited for the perfect heart. She required numerous medications, had a balloon septostomy at 1 month old, was intubated for many months, had multiple seizures, coded several times and had a broviac placed to administer medications when she was 5 months old. 
In January of 2003, Alexis' lungs were failing and her team called a meeting to discuss our option at that time. I asked that we wait just a little longer and they agreed. On January 22, 2003 at 4AM, I received a call from our transplant coordinator letting me know that a heart had been found for Alexis. After 6 months and 4 days of waiting, Alexis received her 2nd chance at life.
Alexis had a very difficult recovery due to being so ill while waiting for her transplant. 1 month post transplant, she failed extubation numerous times and eventually required a tracheostomy. At the age of 8 months old, on March 16, 2003, Alexis was discharged from the NICU at LLUCH. 
Alexis is now 9 years old and full of life. She plays softball, loves to dance and adores Justin Bieber