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All the cards were stacked against us as we sat around a board room table filled with our family members and a team of physicians in the NICU. The head doctor a geneticist started to calmly report the findings of the lab, MRI, and other hundreds of test performed. She is soft-spoken and starts talking in circles with medical jargon way above our heads. It starts to feel like I am in a tunnel. Her voice starts to turn into a low far away murmur as she tells us our new grandson has a very rare genetic disease and that

On March 6, 2018, Lucas was born. He was reported to be a healthy baby boy and the family was elated. Soon Lucas began to show signs of lethargy and not eating well. They were not overly concerned at first but as discharge time was drawing closer one nurse had a strong feeling something was just not right. She asked if she could get a second opinion. A doctor was brought in late at night to examine him and felt that he possibly could have an infection. My water had broken early and that was their chief concern. We were