My Sweet Abram Jude was born on 4/9/2018, 3 weeks early, but weighed 3 lbs and 11 oz


My Sweet Abram Jude was born on 4/9/2018, 3 weeks early, but weighed 8 lbs and 11 oz. My labor and delivery plan went out the window. He was born via cesarean. It was a long 48 hours as I fought so hard to bring him into the world. That fight continued as Abram was born with a rare genetic disorder that we had no idea about. He had a breathing tube and vent, but eventually a tracheotomy was performed. He was doing amazingly! I was pumping 8 times a day in hopes to be able to nurse him once he was able to eat by mouth. He had Congenital Central Hyperventilation Syndrome. There is only 1000 known cases. He lacked the autonomic response that tells his brain to breathe while sleeping. With this syndrome, many have digestive issues with their colon. Abram had total Hirschprung’s of his colon—this means he did not have the ganglion cells that push gas and stool through. So he had an ostomy and his stool and gas came out in a bag through his lower intestines that was attached to his abdominal wall. I accepted that our little warrior had special needs. It wasn’t easy for me to accept as I so desired a “normal” family. I asked God to help me change my persoective. He answers as He is so faithful to do so. “Normal” doesn’t change the world. Abram is my first and only baby. I’ve waited 39 years for him. After 2 months in the NICU, we moved to the stepdown unit, where the countdown to home began. We were so excited with this new step in home life. We had to find a night nurse due to him being on a vent, as well as remodel our house to accommodate his needs and having a nurse day and night. My husband and I made the decision to live life to the fullest and that we were not going to live life limitedly because of Abram’s diagnosis. We would live by God’s grace and believe that Abram would rise and conquer every hurdle. We knew that our little warrior was born to move mountains, even if that meant through his tubes and vent. Abram turned two months on June 9th, 2018. We did a photo shoot in the hospital and had the most perfect day together. Just the three of us. The next day, Abram aspirated and his heart arrested. He was placed on ECMO, which is a lung and heart bypass. He lost his pulse twice within an hour of CPR—with chest compression. Five days later, on June 15th, 2018, we surrendered our Beautiful Boy to Jesus. He will forever be in our hearts. He will forever be a warrior. He will forever be in the hearts of all who love him in heaven and on earth. Thousands followed our journey and fought with us. Though our hearts are broken, we are not without hope. We will never understand why, but we fully trust in the Creator of our hearts. He is a Good, Good Father. We have so much peace, but that doesn’t mean the absence of pain. We believe we will have more babies, but no one will replace our Abram Jude.