Two weeks later, we returned for the follow up ultrasound. As the ultrasound went on, we both could feel something was wrong. The technician wasn't talking like normal and at one point left the room to go ask someone a question. When she returned, she was followed by two doctors who had been watching the ultrasound in another room.
The doctor quickly informed us that they were seeing a significant heart defect. The words hit like a sledgehammer.
How could this be? We were both healthy. We had done everything right. Everything had looked good on the previous ultrasounds.
Then she continued "It also appears that some of his other organs aren't in the right place."
We had no idea what any of this meant, other than it wasn't good. The doctor informed us that we would need to see the cardiologists, as well as some other surgeons, at Cincinnati Children's Hospital. We would need to work with a specialty OBGYN going forward and would need a number of tests to find out just what exactly was going on.
This was without a doubt the worst day of our lives. The next few days weren't any better. We were completely helpless. We are extremely blessed to have unbelievable support from our family and friends just to let us know they are here for us and our baby. We have truly been moved by the outpouring of love and cannot express our gratitude enough for this.
We went to Children's two days later for a fetal echo, which got an up close view of the baby's heart. They walked us back into the room and the first thing I saw brought me to tears. It did the same for Michelle. An inspirational painting was hanging in the room and the character in it had the name we had both determined to be our favorite. The painting was named "Owen with a Bee on his Nose" and read "With all the love in his heart Owen can support the world." It spoke about how love can overcome obstacles and we should not let little things like a bee on your nose distract you from what is important in life. This had to be a sign. We knew from that moment that our son would be named Owen.
Owen is said to mean "young warrior" and we knew that is exactly what he is going to be. During our appointment, the cardiologist at Children's diagnosed Owen with something called Heterotaxy Syndrome. The basics of Heterotaxy are that some organs don't form in the right place and there is a significant heart defect. Owen's heart is flipped and pointing to the right (normally points left), the liver is in the middle (usually on the right), and his stomach is behind the liver and partially herniated through the diaphragm. The main concern is with Owen's heart. There were a number of issues that they could identify from the echo and we were told that it would likely take multiple surgeries to correct.
The chances of having a baby with Heterotaxy syndrome are 4 in 1 million. The cause is still unknown. The next week we met with a team of surgeons, doctors, and nurses to discuss the plan going forward. Michelle had an MRI to get a better look at the rest of Owen's anatomy, and the medical team went over a number of scenarios that might occur after Owen is born. They were unable to provide any definitive information until Owen comes out and they can evaluate and test him. The team informed us that Owen will need to be transferred right away to Children's after he arrives and immediately undergo an Echo on his heart and an MRI on his anatomy.
We have been making frequent trips to the doctor since late April to monitor Owen's growth and activity. He has been doing well moving around and growing. The doctors have decided that it would be best to induce at 39 weeks and the induction is scheduled for Tuesday, July 8th. We know that we have quite a journey ahead, but we can't wait for our little warrior to come and to see his face for the first time. Michelle has been an unbelievable beacon of strength dealing with these issues, being monitored twice a week, and dealing with the normal issues of pregnancy. If Owen is as brave and as strong as his mother, he will be ready for anything.
We will update this blog regularly on the happenings and progress along our journey when Owen arrives in just over two weeks. We greatly appreciate all the thoughts, supports, and prayers for us and our special baby boy, Owen the Little Warrior.
