On Wednesday July 22nd Benjamin Joseph rushed into the world. Benny was so ready to meet his mommy and daddy that he didn't even wait on the doctor. Benjamin was so beautiful, his cry was fierce, and he was perfect. A few hours later during his first check up a heart murmur was heard. Gerald and I were told this was not extremely unusual in newborns during the first 24 hours and it would probably
resolve the next day. We were so excited! The worry of yesterday was gone and Benny was again healthy and whole in our eyes. On the third day Benny was in the nursery when the doctor checked him again. I was alone in the hospital room when the doctor came to speak with me. The doctor sat down in the chair and worry covered his face. He heard the murmur again and now we needed an echocardiogram. This was not a usual newborn murmur, this was something bigger. We waited for hours for that first echocardiogram. We felt impatient, wanting to take our precious boy home. At 4:30 Friday the echo was done and we went home. By 5 pm I had two voicemails. One from our pediatrician asking us to return his call, the other from a pediatric cardiologist's office confirming an appointment for Benny and another echo the following Monday. The pediatrician explained that Benjamin has aortic stenosis. Basically his aortic valve, instead of opening its 3 leaves in sync to allow blood flow, is fused together in the corners restricting the blood flood. He was originally diagnosis in the mild to moderate category and we researched this all weekend. From what we could find he would MAYBE need surgical intervention in adulthood. We went into our first cardiologist appointment armed with our internet knowledge and hoping for the best. We were crushed. In 3 days Ben has moved from the mild to moderate category to the severe category. He would need surgical intervention very soon and again when he is around 5 years old. We were told surgery would probably need to happen in his second week of life. After the cardiologist spoke with the surgeon we were told to wait and see if Benjamin could grow more (he was 6lbs 8oz) and if his restriction would level off instead of getting worse. After that Ben was checked each week. From week 1 to week 2 he lost weight. Ben was using so many calories while nursing that he was losing weight. We switched him exclusively to bottles and he started to gain!! We met with the cardiologist at the hospital where his surgery would be. He assessed Ben and presented his case to the group of cardio thoracic surgeons. They all agreed that Open Heart Surgery would be the best plan for Ben and they would aim for early October for surgery to give him more time to grow. We were so scared. This felt like a death sentence, someone was going to cut our precious son open and remove his heart. Our baby was going to be in pieces. This was the darkest and most hopeless emotion I have ever experienced. All I could do was focus on helping Benny gain weight so that the surgery could be a little bit safer. Every ounce he gained bought us more time. Even though his valve was becoming more and more restricted he was gaining weight steadily. We felt confident he would easily make it until his October surgery date. On August 28th our confidence was shattered. Benny's breathing became shallow and very fast. He was squeaking and his whole body was bobbing up and down as he breathed. We drove to the cardiologists office right away but he was out. After talking with us on the phone he sent us to Indy to be evaluated again by the cardiologist there. The next Monday the cardiologist called to explain they wanted to do surgery that week and that the nurse practitioner would call later that day to schedule it. By the time she called a new baby was born, with more severe defects, and was given Ben's surgery spot that week. The surgeon was out of town after that for 10-12 days and we were given the date of September 23rd for Ben's surgery. As the days until surgery grow fewer it is clear that Benny's little body is working very hard. He often breathes very hard and now sweats when he eats and sleeps. Benny is exhausted and his heart is too. We are counting down the days until surgery with hope and fear. We so deeply hope that this will help Benny, but we also fear our precious boy undergoing such an intense procedure. We love Benny with all of our hearts and we have been shown such love and support by so many wonderful friends and our families. We are thankful for each of you and we can't wait to share Benny's extraordinary life with all of you. Please keep praying and sending warm thoughts our way. This little boy has had a big life so far and it is only getting bigger! Benjamin Joseph Vandeveer, you are loved.
