Gabe was born on March 16, 2015. He arrived quickly and was given a 9 on the APGAR scale. After a few hours of getting to know the newest member of our family, he was accompanied by Nate to the nursery for his first sponge bath and check-up. While the nurse was looking him over, she noticed a dark space in the roof of Gabe's mouth. With the use of a flashlight, she realized that Gabe had been born with a cleft palate, which had not come up in any prenatal ultrasounds, nor in his initial checkup by the pediatrician after birth. Our joyous morning had taken an unexpected turn.
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| The Day Sweet Gabriel Was Born 3/16/15 11:11AM |
Gabe's first 24 hours were precious, but difficult. Most notably, he had difficulty eating and could not form a seal to breastfeed or to suck on a bottle. We learned how to use specialty bottles very quickly, but Gabe still wasn't eating enough. The next day he was taken via ambulance to Geisinger Medical Center in Danville, Pennsylvania while Nate and I drove home with an empty car seat to pack for our stay in the NICU. Arriving home to pack without a baby in tow and seeing his finished nursery was heartbreaking for me. We packed as quickly as possible and made our way to Danville.
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| Daddy Learning How to Feed Gabe with One of Many Specialty Feeders We Would Try Before Finding Dr. Browns Specialty Feeders |
When we arrived at the hospital, we were thrilled to discover the wonderful doctors and nurses who had been caring for Gabe in our absence. Over the following days we had numerous meeting with the various experts on Gabe's Cleft Team, as we learned more and more about how to care for our extra-special bundle of joy. This care and professionalism would continue throughout our countless trips to Danville, and during a successful surgery to close his cleft. We had never anticipated being the type of parents who would become so familiar with the layout of a hospital, but here we were.
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| The Day of Gabe's Cleft Palate Repair Surgery |
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| 9 Months Old! With Those Pesky No No's! Still Smiling. Always Smiling. |
From day one, Gabe has been a fighter! What better way to recognize his courageous and fighting spirit than to join a community filled with other brave little boys and girls. Tiny Superheroes is a project that seeks to empower kids with unique illnesses or disabilities by sending each child a handmade cape. Gabe wears his cape to each and every appointment and surgery. It has been a source of strength and encouragement for our entire family, and the community as a whole is incredibly supportive. You can sponsor a cape for a Tiny Superhero just like Gabe!
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| Gabe's Photoshoot for Beauty Revived's 50 Beautiful Children Campaign. Photo Credit: RFK Photography |
As we went through our check-ups, cape in tow, we learned that Gabe had a number of unique traits (ptosis and pseudoarthrosis of the clavicle among others) that led to doctors recommending genetic testing. As it turns out, Gabe had two different "spelling differences" in his genetic makeup that had almost identical symptoms. We were unsure how this would affect Gabe's future health, not to mention the possibility of any future children. Again, our family's future had changed abruptly and unexpectedly.
After months of consultations, blood tests, Thomas the Train bandages, and saliva swabs, we were able to identify that one of these syndromes was very unlikely to have any negative side effects on his growth and development. In addition, we learned that any future little brothers or sisters who may have similar syndromes would also see little to no negative effects on their health. Gabe's current diagnosis is Coffin Siris Syndrome. His genetics team is confident that he will continue to grow and develop as he is now, bright and healthy. We will continue to closely monitor his unique qualities throughout the remainder of his life.
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| Gabe's EKG with the Pediatric Cardiologist. He was a Trooper and His Heart is PERFECT! |
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| Gabe's EEG for the Pediatric Neurologist. Gabe Counted the Wires and Named the Colors |
Gabe's journey has been a little different than anyone expected, but he has handled each challenge with tremendous courage and an infectious sense of humour. In only three and a half short years on earth, he is already the strongest and most inspiring person we know.
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| Photo Credit: RFK Photography |
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