Here is my heart baby, Aubrey. She was born on Sept. 14, 2011 after a normal pregnancy. She was diagnosed 2 days after she was born with a large VSD, bicuspid pulmonary valve, several small ASD's, and pulmonary stenosis. Before surgery, she simply didn't like to eat- it wore her out, caused rapid breathing, and therefore she was very underweight. She underwent open heart surgery on Dec. 22, 2011 and is now a thriving almost 5 month old- she gained over 2 lbs her first month post surgery!!! I...
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....
My son Alex was born June 22, 2011. Five hours after he was born, a nurse noticed that his nail beds were turning blue. They checked his oxygen level, and it was in the 50′s. They tried blow-by air and only got him up to the 70′s. An Echocardiogram showed Tricuspid Atresia with Pulmonary Atresia. He was transferred to the local teaching hospital and spent two days in the NICU on Prostaglandins before being transferred to Children’s Hospital Boston. He had his first open heart surgery (BT Shunt) at 5 days old and was in the hospital for his first 3 weeks of life. I was by his side the whole time with frequent visits from his dad and two-year-old sister. Alex had his second open heart surgery (Bi-Directional Glenn) at four months of age, and will need one more open heart surgery at two years old (Fontan). Alex is a miracle and every day I am grateful for the exceptional care by his treatment team.
Corbin was born 364 days after his big brother after a normal pregnancy. 5 days later we found out he had life threatening heart defects. He spent 81 days in the hospital, underwent three heart surgeries, one heart cath, and countless small procedures during his stay. He fought his disease like a lion and won over the hearts of the doctors and nurses at Ruby Memorial in Morgantown, Wv. He sadly passed away two days before he turned three months old, after his third heart surgery. His heart stopped and he gained his wings. My lion has taught me more then I ever thought a newborn could do. I now advocate for pulse ox testing and heart defect awareness. "I have loved you for a thousand years, and I will love you for a thousand more."
Meet Ethan. At (almost!) three years of age, he is your typical, active little boy. He is currently obsessed with Thomas the Train and Buzz Lightyear, and will play at the park all day if he could. Ethan is also a survivor. On March 8th, 2009 he was born with a life-threatening heart defect known as Pulmonary Atresia with a VSD. He was rushed to Duke University Medical Center where he underwent open heart surgery at just 3 days old, had a pacemaker inserted 8 days later, and suffered full cardiac and pulmonary arrest 4 weeks after that. Despite his rough beginning, Ethan is now thriving! Read more of his story by clicking on his sweet face, and help us raise awareness for congenital heart defects!
My sweet boy was diagnosed at 5 days old with the congenital heart defects Transposition of the Great Arteries (TGA) and a hole between his ventricles (VSD). We were shocked, to say the least. I had two level 2 sonos in the last two months of my pregnancy and they detected nothing. He underwent his first open heart surgery at 9 days old and his 2nd (due to scar tissue build up from the 1st) at 4 months, 12 days old. He is amazing! With his broken heart, ours were made full and overflowing. He will need at least one other surgery to replace his pulmonary valve and we hope that will be all, but only God knows what the future holds. We are so grateful to have this sweet boy in our lives. CHD Awareness Week is February 7-14. Mamas, if you're pregnant or know someone who is, make sure you ask for (& tell your friends to ask) a pulse oximetry test on your baby- it is painless and non-invasive. It could save their life.
Shevoni "Chevy" Charles was born June 16th, 2011 with Hypoplastic Right Heart Syndrome. Her combination of defects included Pulmonary Atresia with IVS, Tricuspid Valve Hypoplasia and severe coronary sinusoids. Chevy underwent her first open heart surgery at the Children's Hospital of Atlanta at Egleston when she was only 6 days old with the BT Shunt and completed her 2nd surgery in November 2011 with the Glenn procedure. Throughout her battled she's endured two cardiac catherizations, a collapsed lung, and ongoing digestive and reflux issues along with all the other usual recovery experiences most heart babies face. Chevy is the epitome of strength, hope and resilience and has shown us all what it means to actually "put your heart into what matters". These children are not to be underestimated. When challenged with the choice to either fight or submit to being a victim of the "1 in 100" odds ... they will always fight first.
Jacob Baker was born on March 23, 2010 with Hypoplastic Left Heart Syndrome. Shortly after birth his septum became intact and he coded. He needed immediate intervention and his lungs had flooded. At 9 days old Jacob was finally strong enough to have his first open heart surgery, this was also the day we were able to hold our beautiful boy for the first time. Jacob had a g-tube placed at a month old and was finally able to come home after 8 long weeks in the hospital. Jacob thrived at home and was able to have his second open heart surgery at 4 months old. This time he was home only 6 days after his surgery. We recently learned that due to Jacob's rough start both of his vocal cords are paralyzed. Half of his airway is blocked by scar tissue and he will need a complete airway reconstruction in April of this year. He will have his third open heart surgery when he is 3 or 4 years old. Despite everything our little warrior has been through he is a happy, energetic loving toddler. He loves to play with his trains and cars and push his older brother around. Jacob is such an inspiration to so many people and I am so proud to be his mother. ♥
My son's name is Caleb and he's now 2 yrs. old with Pulmonary Atresia with Intact Ventricular Septum, Tricuspid Stenosis. He spent the first 4 months in the hospital, awaiting a heart transplant, then ended up getting another open heart surgery instead, Bidirectional Glenn. He's a happy 2 year old, although he will definitely need more open heart surgery, we take it one day at a time and you can't tell a thing is wrong with him by looking at him.
This is our sweet little angel, Levi. He was born on May7th, 2011. He was diagnosed prenatally with an AVSD. The doctors delivered early due to drops in his heart rate and he was in heart failure basically from day 1. Levi was such a fighter and proved the doctors wrong time after time. He had open heart surgery the day before he turned 6 weeks old. They thought the surgery was a success but, after kidney failure and a stroke an echocardiogram revealed the sutures in his heart did not hold. We were told there was nothing the surgeons could do and made the heartbreaking decision to let him go to heaven on June 25th 2001 at 7 weeks old. We love him and miss him daily, but will fondly remember how much he liked his pacifier and how much he hated his bath. We'll see you again someday my sweet baby. ♥
This is Madelyn born Aug 6 2009 with HLHS (hypoplastic left heart syndrome) and TAPVR (total anomalous pulmonary venous return). We were told she would need a 3 stage operation to help her half a heart she was born with to function. She had her first open heart surgery at 7 days old where a Norwood-Sano shunt was put in to help the blood flow through her body and back to her heart. She had several complications from this surgery including kidney failure and her blood pressure dropped so low we almost lost her many times. We spent several long months in the hospital with her after this first surgery and at 6 months old she needed the second stage surgery. At 6 months old she had her Glenn done again with several complications and more time spent in the hospital then out. Mady has had numerous heart caths done since her 2 surgeries and will have the final stage surgery done in the next year. These surgeries do not cure Mady of her CHD but prolong the time before she will eventually need a heart transplant. Right now she is 2 yrs old and doing ok but everyday is a struggle of taking daily medications and fighting to get her little body to gain weight. I thank God everyday for my little miracle girl.