His smile sets my soul on fire and exudes strength far beyond my comprehension. Nolan was born November 27, 2002. Nolan's entry into this world was silent. I remember after hours of labor, my heart sank as the nurses began to, "work" on him. After what seemed like an eternity, he let out a little cry. The doctor examined him, and gave the nurses the green light to wrap him up and place him on my chest. My heart was full! I had waited 9 months to meet my future major league ball player, and he was here. Little did I know that our journey would force me to surrender to God, and place Nolan's life in His hands. I cannot share, Nolan's story without giving glory to God.
The day after Nolan was born we were told that he failed his newborn hearing screening. The nurse reassured me that he had a rough ride during delivery, and he more than likely just had fluid in his ears. His hearing was tested several times before we were sent home, and the results were all the same.
Nolan and I returned to the hospital the day after being released for a weight check. Nolan wasn't nursing well and there was some concern with his ability to suck. After meeting with the lactation specialist we were sent to a larger hospital. We stopped at the WIC office to get a script for a breast pump as well as directions. When we arrived at the Salem Hospital we got lost and ended up walking down a dark hallway. A nurse approaced me and asked if we needed help. Her gaze suddenly shifted down towards Nolan, and in one swoop she took him out of his carrier, and was checking his vitals. In the following hours, I learned that Nolan was, "on his way out" as the nurse put it. His core temperature was so low, that if we hadn't gotten lost and ended up right outside the Special Care Nursery, he wouldn't have made it. I still get chills when I think about that day. Our journey reflects nothing less than Divine Intervention.
The week that followed was nothing short of devastating. Nolan underwent so many tests. After a urine test on day 4 the doctor came in and informed us they knew what was wrong. The only thing that was going through my mind was...great, now we can FIX it! My thoughts were interrupted by the doctor chiming in and telling us that Nolan has brain damage as a result of CMV. Sadly, I asked many questions about CMV, and not one medical professional could give me a straight answer. We were finally released, once again. Nolan is now 2 weeks old, and still not eating or breathing well. The second night we were home, I panicked, loaded him in the car and sped to the ER. We were rushed in the back, and in minutes surrounded by a team of nurses and doctors. In less than a half hour the PANDA response team arrived via ambulance and took us to Doerenbecher Children's Hospital. The morning of day 3 our lives were forever changed. The Infectious Disease Specialist came in and told us that after reviewing Nolan's CT scans and MRI his life expectancy was 4-6 weeks. Shortly after the news I was advised to place a DNR on Nolan, due to the enormous impact his brain suffered from this virus.
Sadness, complete sadness. As I was holding Nolan is his fuzzy blue pajamas my tears began to soak the blanket he was swaddled in. I couldn't wait to meet him, and now I had to prepare to say goodbye. It was at this moment that I surrendered to God. I openly acknowledged that Nolan was His before he was mine, and that if He was going to take him back, we just needed the strength and grace to deal with it.
Here we are almost 8 years later! Nolan is bound to a wheelchair. He has a g-tube, cochlear implant, AFO's, and lots of equipment to keep him functional at home. He suffers from seizures, and is vision impaired. BUT...let me tell you what Nolan can do...He loves, smiles with his entire body, giggles when his heart is full, rides an adaptable trike, swims like a fish, cuddles willingly, activates switches, enjoys listening to music, adores animals, and thrives in social settings! At this point, I cannot dwell on all the hospitalizations, and battles that Nolan has and will have to face. Instead I choose to focus on his strengths and the joy that he exudes towards life and others. The meaning of Nolan is, "chariot fighter, champion." He IS a fighter, and a teacher!
"I do believe that when we face challenges in life that are far beyond our own power, it's an opportunity to build on our own faith, inner strength, and courage. I've learned that how we face challenges plays a big role in the outcome of them." -Sasha Azeredo
Nolan's journey through life will continue to be challenging. He is a noble soul and I will continue to cherish every moment I have with him on this earth.
CMV is a horrible virus, but I will not let it define who Nolan is!
- Shared by his mother, Amy
Posted: 6/7/2016 12:38:23 AM