Grayson's story is a long one. On March 28, 2014, my wife, Heather, entered GBMC in full labor at 23 weeks and 1 day into her pregnancy. I was in Boston at the time. She was told the baby would have less than a 35 percent chance of survival. He was born weighing 1 pound, 15 ounces and was sent to the NICU — where he was placed on a ventilator and into an incubator — immediately after birth.
While in the NICU, Grayson was diagnosed with a stage 3 and 4 bleed on the right and left side of the brain, respectively. His condition was so severe that on several nights we were told there was nothing more the GBMC staff could do, and that Grayson might not make it to the morning. Somehow, he always did. He was at GBMC from March 28 to August 11, and when he left the NICU, he had two chest tubes, a ventilator for two months, three surgeries, countless scans, X-rays, blood work, approximately 22 blood transfusions and other tests.
The first night in the NICU, Corin was Grayson's nurse. His entire body looked like one big bruise and his eyes were still closed. He continued to try to breathe on his own despite the ventilator. Corin kept saying he was a fighter, "just like 'Rocky,'" and the nickname stuck.
Every single member of the GBMC family that we encountered during Grayson's stay was special. The nurses and NICU staff became family to us - they cried when we cried, laughed when we laughed and were there when we needed a hug. The doctors were the most caring that I have ever encountered - Dr. Sabah Helou and Dr. Kendall Jenkins included, and Dr. Maria Pane in particular. My wife and I truly believe that Grayson is with us today because of Dr. Pane. There were times when she sat with us and prayed over Grayson. One night, after we had been told that Grayson may not make it until morning, we decided to have him baptized by his grandfather. Dr. Pane joined us.
On August 11, 2014, Grayson was transferred to Johns Hopkins Children's Hospital. He was treated for electrolyte imbalances and was there for two months. We were finally able to bring him home in October and he was sent home with a G tube, feeding pump, oxygen and at least 11 prescription drugs.
Grayson is now off of the oxygen, and has the G tube for night feedings only with a plan in place to stop soon. He no longer needs three of his medications and he weighs 14 pounds, 8 ounces. He makes a lot of noises, which always makes us happy. He has physical therapy and occupational therapy at home once a week and clinical appointments a few times a month. Grayson is now 16 months old, with an adjusted age of 11 months. In the next couple of months, we will start to see if there are signs of cerebral palsy or any other issues from his early birth.
Grayson is one of six children and Heather and I decided from the beginning that he will live a normal life despite any issues. We feel so much better sleeping at night since Grayson came home and we do everything we can as a family. Heather and I have five daughters: one is a special education teacher, two daughters are in college, and we have an eight-year-old and a six-year-old. Each one of our kids is different in his or her own way and it is great to be a part of that. We love being parents to our wonderful children, Chelsea, Nicole, Kelsey, Jordin, Micaela and Grayson.
I may be tiny, but I am strong
I will not question what's right or wrong
Focused, committed, resolved
A puzzle for life, needing to be solved
Through the night, into the day
My name is Grayson, and I am here