“You will need to go for a Level 2 ultrasound for Baby B--We are not seeing a four-chambered heart…” These are words that will forever sting my ears and cause an ache in my heart. No, no, no. This can’t be. There had to be a mistake. When I got past the initial shock of this news, I begged, pleaded, and prayed that the doctor was wrong. We had struggled for so long to get pregnant; how could something now be wrong with one of our babies? Another ultrasound confirmed our fears. Not only would our child suffer from Congenital Heart Disease, but the cause of the disease was due to its Heterotaxy syndrome. “….Stomach is on the incorrect side, liver on the incorrect side, no sign of a spleen yet…” From there our lives were a whirlwind of tests: MRIs, non-stress tests, ultrasounds, and echocardiograms were on our weekly agendas. At the end of May 2014, our precious little babies decided they wanted to try to enter our world waaaayyyyyy too early at only 29 weeks. Thankfully, the doctors were able to stop them. However, I spent a week in the hospital as doctors monitored both babies. Baby B’s heart was not tolerating the medicine being used to stop the contractions. There were multiple episodes of Bradycardia, when Baby B’s heart rate would drop below normal levels. At one point Keith and I were told we had to make a decision between which baby we wanted to save in case Baby B’s heart rate was to drop too low and an intervention was needed. Keith and I REFUSED to choose between our babies and said that we would cross that bridge if we ever got there. Fortunately, once I was taken off of the medicines, Baby B’s heart rate stabilized and I was able to continue bed rest at home with monitoring at the hospital twice a week. On June 28th, six weeks early, I gave birth to two sweet little boys. Lucas Charles was born at 5 lbs 3 oz and Benjamin Gerhard was 4 lbs 2 oz. After a quick kiss to each boy, they were immediately whisked away from us and taken to the NICU. Lucas was placed on a breathing machine due to fluid in his lungs, and Benjamin was immediately transported to Cincinnati Children's Hospital.
Luke came home from the hospital in early July, but Ben continued to heal at Children's in the Cardiac ICU. In his first month of life, he had two open heart surgeries (the second one being an emergency surgery). At six weeks old, Ben underwent what we were told was a “routine” cardiac cath procedure. Ben had a tough time recovering after this procedure. His heart rate, blood pressure, and oxygen levels dropped and he needed to have a breathing tube reinserted. His left lung collapsed, and his right leg (the site of where the cath was inserted) turned dark blue. Ben is a fighter, though, and worked his way back to a stabilized state. He was transferred to the Cardiac Step Down floor where his job was to eat and grow. Unfortunately, he wasn’t gaining enough weight. In September, Ben underwent a third open heart surgery. This procedure helped his heart immensely; he recovered quickly, and looked the best that we had ever seen him! On October 14, 2014, our dreams came true—our little Ben was discharged. We brought him home on many medications, a feeding tube, and oxygen, but it didn’t matter. Our family was together and finally we felt complete. Ben did well for a couple weeks at home, but then we started to notice a difference. He no longer wanted to eat from a bottle, and cried through many of his feeds. In November, he had another cardiac cath, which provided him some relief for a few weeks, but then we noticed he was having issues again. The day after Christmas, Ben stayed in the hospital overnight to be monitored while starting a new blood pressure medication. January rolled around and it was time for another cath procedure to see if the blood pressure medicine was helping. Unfortunately it wasn’t working, and in fact, was making things worse. It was decided that Ben would need another open heart surgery or be placed on the heart transplant list. The doctors decided that they needed just a bit more information before deciding which path Ben would take. After his second cath procedure in January, it was decided that an open heart surgery would be the best route for Benjamin and his heart. In February, Ben will undergo his fourth heart surgery in seven months. To say that this has been the toughest battle of our lives so far is an understatement. We have cried tears of sadness and tears of joy (sometimes both in one day!). We have felt helpless, hopeless, and desperate. Through it all, though, we look at our little miracle. Our boy who continues to fight every battle that is put in his path. He is resilient. He is strong. He is our Super Ben.