Apr 21, 2019 Latest post:
Jun 16, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Eli was born with a condition called hypoplastic left heart syndrome or HLHS. According to the CDC, HLHS affects 1 in 4,344 babies born in the US. HLHS is a condition in which the left lower chamber called the left ventricle, which normally pumps blood to the body after returning from the lungs, does not fully develop and therefore the right ventricle has to pump the blood to the lungs and the body. Eli's story started with his 19 week ultrasound when we went to determine if he was a boy or girl. The doctor's noticed that the left side of his heart was small. From that point on, our lives were different. There was a lot of unknown and so many questions.
After Eli was born, he had open heart surgery at two weeks old and then again at six months to help reroute his blood so the right ventricle did not have so much work to do on it's own. We spent the first three months of his life in the hospital and when he had his surgery at six months, we stayed another three weeks in the hospital. Eli has had several procedures in his three years. Besides the surgeries, he has had several ECHO's to keep an eye on his heart and several heart catheterizations to place stents in his heart and open up his arteries that are also narrow.
Eli has inspired us so much because of his strength to act like a normal toddler. He has low oxygen levels that prevent him from being overly active, but he always tries to push his limits and we have to pick him up to slow him down! He is also the sweetest little boy with his smile and manners. Eli still has a few more steps to go before we can allow him to take a break. In a few weeks, he will be having a third open heart surgery that is meant to make his left ventricle work like a normal heart. If this surgery is successful, he will have a little more energy and he will be able to live a semi-normal life.