Here we go again ❤️‍

January 28th, 2025

The joy and hearts full of love we experienced were unfortunately short-lived. Just four days after being discharged from the NICU, Natalia was readmitted to the ER due to complications with her breathing and feeding. Her already compromised motility had further declined, and her persistent vomiting continued for more than a day. Her oxygen saturation levels were critically low, necessitating immediate oxygen support, prompting us to rush her to the hospital.

Our time at home was brief, during which Luciana, her big sister, was beyond excited to have her in the house. I must admit that Natalia’s care is a 24/7 commitment, but we do not mind at all because we love her so much.

Our hearts break into thousands of pieces seeing her suffer, and the inability to alleviate her condition haunts our souls. We live day by day, balancing work, home, and hospital responsibilities, leaving little time for family recreation. We are still seeking balance in our lives. The future is uncertain and complex, but we feel blessed to be chosen as the brave parents, and of course, big sister, of Natalia. Bohring-Opitz Syndrome is a condition that will not go away; it is part of Natalia, and she will live with it forever. We hope for better days to come.