We will never forget the moment we found out that we were pregnant. We were thrilled to become parents, and very excited to meet our baby boy, who we expected to arrive in December 2017. Becca had a joyous and healthy first two trimesters, with regular check-ups and ultrasounds all looking great.
On September 5th, 2017, at just 26 weeks pregnant, Becca’s water unexpectedly broke. We were shocked and scared when the doctors told us that we would very likely deliver a tiny preemie within 24-48 hours. She was transported to a regional hospital an hour and a half from home, where she would stay until Remy was born, so that she could be on bed rest and be closely monitored. We knew that every additional day Remy stayed in utero after that moment would be crucial for his development – especially for his lungs – one of the last major organs to develop. This was an extremely stressful time for us, but we celebrated every day that Becca remained pregnant, and she and Remy defied the odds as he stayed put for an additional 8 weeks. Unfortunately those last 2 months in utero were tumultuous for Remy - he needed amniotic fluid for proper development. With this lack of fluid, imaging and testing was quite difficult, and Remy was seemingly a complicated case. We tried our best to remain positive while we met with countless specialists, experienced many scares, and were presented with potentially devastating scenarios (some of which came to be). On October 27th, 2017 Remy Zayve Dornich was born at 34 weeks, weighing in at 2 lbs 11 ounces, with a tenacious spirit the world has never seen, and gifting us the opportunity to love unconditionally for the first time. His birth was traumatic and his lungs were severely underdeveloped, so he was immediately whisked away and put on breathing support. Despite the fact that we were unable to see him for several hours, and were not able to hold him until his 5th day, we fell immediately in love with our boy. Our newfound, incomprehensible love for Remy superseded all the scares and trauma, and gave us the strength and dedication needed for the long road ahead. At first, doctors were confident that growth and development would resolve many of their initial concerns, and although we so badly wanted to take him home, we checked into the local Ronald McDonald House and prepared to give him time to develop and grow. When things were not progressing as doctors had hoped, they discovered that Remy had a nasal blockage and needed surgery in order resolve his respiratory issues and eventually breathe on his own. At 5 weeks old, he was flown to the The Children’s Hospital of Philadelphia (CHOP), arguably the best children’s hospitals in the world, especially for chronic lung disease (Remy’s primary challenge, and the most common issue for premature infants). We were under the impression that doctors at CHOP would be able to complete Remy’s nasal surgery, help us heal his lungs, and send us on our way within a few weeks. Unfortunately the stress of transferring put Remy into “pulmonary hypertensive crisis,” causing countless life-threatening desaturations in his oxygen and his heart rate to plummet to near fatal levels. We would come to find out later that these episodes caused severe and irreversible brain damage. Given his condition, Remy’s nasal surgery had to be put on the back burner and our team of doctors focused on improving his lung condition. In the weeks that followed, Remy endured countless blood tests, transfusions, ultrasounds, cat scans, MRIs, medications and mechanical breathing interventions as doctors tried to figure out this mysterious little being. In the meantime, we spent our days and nights in awe of our precious baby, marveling at his sweetness, beauty and resilience. We looked past the tubes, machines, and beeping, and loved our sweet Remy, standing by his side through it all. We sang him songs, held his hand, read him books, and held him in our arms when we could. After exactly 100 days of battling the impossible, Remy’s body failed him. After our family spent a weekend together showering Remy with love and celebrating his life, we had to say goodbye to our baby. In the early hours of the morning on February 5th, 2018, Remy passed peacefully in our arms. While we are suffering from the excruciating pain of his loss, he has moved on to a more peaceful place and is finally free from his pain and suffering. It is impossible to not feel tremendous grief and we will forever wish we had more time with Remy before he moved on. Although our time with him was cut short, he has been the single greatest addition to our lives and the greatest teacher we have ever had. Thank you for reading our story and celebrating Remy’s life with us. It is our hope that some good may come out of this tragic experience. |