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Sweet Emerson Rose came into this world on April 11, 2011 at MUSC (Medical Univ. of South Carolina) with hypoplastic left heart syndrome (HLHS). She underwent open heart surgery at 4 days old and came through like a champ. For the next 11 weeks she recovered in the hospital until after 76 days of life, very suddenly on June 26, 2011, God called her home. We are so thankful that during her 76 days of life, she was a happy baby. She smiled all the time and loved to look at new things. When she would look at you, it was if she was looking into your soul. It would melt your heart each time. During the time we spent in the hospital with Emerson Rose, we realized what it meant to us that we were helped by so many people. We realized that life should be about glorifying God by helping others. We were inspired by God to start a foundation in Emerson’s name to help fund research on CHD’s and help families with sick children in the hospital. www.emersonrosehe... www.caringbridge....
Cole Michael was born on August 19, 2002. At eight weeks of age, he was diagnosed with Truncus Arteriosus and we were sent on a life-flight to Children’s Hospital. Six weeks after our arrival at Children’s, Cole underwent his first open-heart surgery. Though his recovery was slow, it was steady and he was discharged 2 weeks later. The homograft he received during his original repair failed quickly and on October 28, 2003, he underwent his second open-heart surgery. His homograft was replaced with a Dacron conduit and porcine valve. Although his body appeared to tolerate the new conduit, it created an anaphylactic reaction to the porcine gelatin found in vaccines, heparin and similar medications. On July 15, 2010, Cole underwent his 3rd open-heart surgery and a homograft was used to replace his Dacron conduit and porcine valve. On January 9, 2012, a stent was inserted into his homograft to try to relieve the restriction that rapidly occurred before resorting to a 4th open-heart surgery. Cole’s heart defect will not be “cured”; it will be medically supported so he may live a life that is normal to him. Whatever may come, however, we will face and conquer it as we have since the beginning...together, as a family.
Kaden was born March 13, 2009. He was diagnosed later that day with Transposition of the Great Arteries. He was transferred to Children's Mercy Hospital in KC and had open heart surgery at 12 days old. There were complications during his surgery and we were told that his heart wouldn't be able to sustain life, but the surgeon never gave up and after 11 hours Kaden was able to come out of the operating room. Later that night he coded and we watched as the drs did CPR and got his heart beating again. The next morning he began improving and was able to come home 2 weeks later. He has pulmonary stenosis and a small VSD that we continue to monitor but he is doing amazingly well. We are very thankful for our little miracle.
My son, Bryson Young, was born with transposition of the great arteries, coarctation of the aorta, Taussing- Bing, VSD, ASD. We had no idea that our son had heart problems until he was born blue and almost died. By the time he was life-flighted to a hospital hours away he was in “profound shock”. He received open heart surgery when he was 14 days old and spent the next four months on a ventilator, fighting for his life. By the grace of God, he was finally healed and his now a spunky, crazy two-year-old.
Our son, Daniel, was post-natally diagnosed with several congenital heart defects at day 2 of life. He underwent open heart surgery at day 7 of life for coarctation of the aorta, several ASDs, and a large VSD at Children’s Hospital Boston. He is now three months old and recovering marvelously. He still has two outstanding congenital heart defects, a bicuspid aortic valve and parachute mitral valve, that are being closely monitored with possible future surgeries pending. We are so thankful to the medical team at Children’s Hopsital Boston and to the Lord for our son’s life.
Meet Matthew. He is Truly a Heart Warrior. When Matthew was born we knew he had a CHD called HLHS. He had his first open heart surgery (Norwood) at 3 days old. He coded for the first two days, but with lots of prayers and faith he came thru and got better and stronger. He was able to come home from the hospital at 4 weeks old. He was on oxygen and a feeding tube still and 8 different medications. It was a really tough road. Around 4 months old we were able to get rid of the feeding tube, that was a good day. At 5 months old he had a heart cath where they found his pumonary artery had scar tissue blocking it and they were able to succesfully balloon it open. Then he had his second open heart surgery (Glen) at 6 months old. He was only in the hospital for a week that time and did really well after surgery. He was able to get off the oxygen at 7 months. We were so excited! Matthew turned two in November 2011. Matthew has been a fabulous kid, he loves his big brother and sisters. He tries his best to do everything they do. He keeps mommy busy every single day by making lots of messes and destroying things, I say this with a smile on my face. Because we didnt know if our little heart hero would be able to do these kind of things, it is a blessing that he can! He has truly inspired us with his strength and loving nature. And we are so grateful to our Heavenly Father for sending him to us. Thank you for letting us share our story.
My heart Heroine,Emma Hartley, was born with Tetralogy of Fallott with Pulminary Atresia on Aug 2,2008 . Her first surgery was at 12 days old at Children's Hospital in New Orleans. Emma's next surgery was at 6 months, then 9 months to put stents in to get us to the big surgery. Her big open heart surgery was at 14 months old. We have been doing great ever since. We face more surgeries and continue to have routine check ups. It's been a rough road but through Faith we are healing.
Our Angel Aaron was born April 19, 2011 and lived to the tender age of 2 1/2 months when he left us to return to his heavenly home on July 7, 2011. He was diagnosed in utero with Hypoplastic Left Heart Syndrome. When he was born he was stabilized and then transferred to the local Children's Hospital where they decided he really had Hypoplastic Right Heart/Tricuspid Atresia/Transposition of the Great Arteries (TGA). He had his first open heart surgery at 1 week old. He did great in his recovery until he had reoccurring bowel issues (NEC) that kept him in the hospital. He spent a majority of his short life there was able to be home with us for about 2 weeks before the PICC line he had gave him an infection which took him from us. We are so grateful to have had this Heart Hero in our lives and can't wait to be with him again! We hope that because of him we are able to help spread more awareness on CHDs.
Darla Jane was not pre-diagnosed, we found out the day after she was born that she had Hypoplastic Left Heart Syndrome. The left side of her heart had not developed at all. We were swept away to the local children's hospital as we were also swept into the world of congenital heart defects. There was so much to learn, so much to know, so much that we couldn't understand. But over these last 10 months we have learned so much and met so many people that will forever shape the rest of our lives. Darla Jane has had two open heart surgeries as well as two cardiac catherizations. She will have at least one more open heart surgery as well as multiple cardiac catherizations to enlarge the stent that is holding open her aorta. It wasn't anything we thought would ever happen to us but here we are.
This is Crew. He was born healthy. When he was 5 weeks old, something just seemed a little off. He would go really pale while he slept, and just wasn't thriving like his three older sisters had. I took him to the pediatrician, who couldn't pin point what was wrong but sent us to the local children's hospital to get checked out. He was diagnosed with Cor Triatriatum and ASD. He had emergent open heart surgery that night. He amazed everyone involved in his care. He is a little fighter and recovered quickly. Shortly afterwards, he developed coarctation of the aorta, which he has now had repaired as well. He is almost 6 months old and still being watched closely, but is doing great. We are so in love with our little CHD warrior!
Mylah Leilani was born on October 1, 2011 with Tetralogy of Fallot. Diagnosed in utero she had open heart surgery at 5 days old to have a BT shunt placed. She recovered quickly and came home for the first time at 11 days old, post-surgery and continues to heal and is healthy. She is almost 4 months old, and she amazes us daily with her ability to teach us to love and show love. She has placed within us a dedication to be better cherish the simple and sweet moments in life. We are so grateful to the amazing staff at Children's Heart Center of Nevada and Sunrise Children's Hospital for their skills and expertise in saving and working towards healing Mylah's heart.
Kaden was born 8 lbs 10 oz on December 5, 2006. He appeared to be a perfectly healthy baby boy up until the day after he was born. On the routine newborn physical the doctors noticed Kaden's color was clammy instead of pink. Hours later he was transported to Sacred Heart Children's Hospital to the NICU and diagnosed with multiple heart defects...including Hypoplastic Left Heart Syndrome. Shortly after being diagnosed he was then transported 400 miles away from home to Winnie Palmer Hospital in Orlando FL where he was stabilized for the first of three open heart surgeries to reconstruct his tiny heart. Kaden had his first surgery "Norwood" at 6 days old, his "Bidirectional Glen" at 4 1/2 months old, and his "Fontan" at 3 1/2 years old.