In March of 2015 I became pregnant with my second child. We went on a family vacation to Disney and took photos of Macy in her “promoted to big sister” shirt in front of the castle. I became extremely ill while on this vacation, and had no idea the roller coaster I was about to embark on for the next 8 months. Our first ultrasound went great; she had a perfect heart beat and looked adorable. I went for my routine monthly visit at 12 weeks. They couldn’t find the heartbeat with the doppler, so sent me in for an ultrasound. I still vividly remember the tech leaving the room with the lights still off to go find the doctor. We were sent back to an exam room where we were told “your baby has cysts on her neck. This is either nothing, or something incompatible with life”. We were sent to the high risk OB who confirmed the baby had cystic hygroma and we would need to do genetic testing and continue to be monitored.

Each appointment after that was heart wrenching. We quickly learned our beautiful baby was a girl with no obvious genetic conditions. Monthly ultrasounds showed issues with her heart, then her kidneys, then her spine. We were sent to Boston for an MRI and more invasive ultrasounds and echoes. My baby was a fighter. I was put on bedrest and medication to control my blood pressure while we tried to avoid a premature birth like we experienced with her older sister. We met with doctors every week, had up to 3 ultrasounds a week. We learned at 35 weeks that she had stopped growing and was anticipated to weigh only 4pounds at birth. Following a non-reassuring ultrasound at 36 weeks where baby didn’t move, we were admitted to the hospital.

At 37 weeks via emergency c-section, Emilia Katherine Hope was born at 4:57pm weighing just 5 pounds and 18 inches long. We learned she had additional medical complications that weren’t seen in utero and a diagnosis of VACTERL association was confirmed based on this new information. 

 

She was sent to the NICU where we had 2 days to soak her in, unaware how sick she was. We spent Thanksgiving together, she met her big sister, we loved on her endlessly. She went into what should have been a fairly easy surgery at 3 days old, and we learned the devastating news that her entire bowel was nonviable. Her amazing surgical team tried an experimental surgery, but we learned there was nothing more they could do to save her life.

 

On the morning of November 29, 2015 we gathered our family and friends to say goodbye to Emilia and take her off life support. We spent time together as a family. Macy blew bubbles for Emilia and we took pictures of the girls together. Friends and family came into the room to say goodbye and give her kisses. We had a blessing by the priest who had done her baptism the day before. We were surrounded by an amazing medical team of nurses who had loved on both my girls. By an amazing primary nurse, Clare, who was not only Emilia’s godmother, but the most supportive and compassionate woman we’ve ever met. I don’t think I could have survived that day without these people. But especially, my mother. Who has always stood beside me, who has loved me and my girls endlessly. 

There is sadness in this life, but there is happiness. There is joy. There is so much Hope.