Nikkolous Uriel Soto De Trevizo was born on February 9, 2011 at 3:53 PM via C-section. He was 8.3 lbs and 21 inches long. My husband and I were ecstatic to meet the little guy. After my recovery period we noticed his elongated head and his protruding forehead. The excitement blinded us. We convinced ourselves that because he was suctioned out his head was misshaped and that it would eventually become round. I held him in my arms through the night. He seemed so perfect to me.
About 24 hours later after he was born the hospital pediatrician came to my room to perform a physical on him. Right away I noticed the way she touched his head over and over again. I knew right then it wasn’t good. The pediatrician looked at me and tells me my son has no fontanel (soft spot) and that she could feel a ridge along his sagittal suture . At the time it was like as she was speaking to me in another language. I rudely ask her to put it in writing and so she writes “craniosynostosis” on a piece of paper. I begin to cry and quickly call my husband to inform him. At home he does some research and prints it out and brings to the hospital. For a while he was very much in denial. He claimed that it was a way for doctors to make more money from the insurance since the pediatrician requested an ultrasound and a second hearing and vision exam.
We were discharged less than 48 hours after giving birth. Physically I felt good enough to go home because the truth was that emotionally I felt that I was going to just lose it. Right before we did our last paper work, the hospital pediatrician swings by our room and kindly gives me a bit of advice. She looked at me and said that it’s hard to take in what she had found in my child but as his parents we’d be his only advocates. I left the hospital feeling very depressed, confused, and frightened.
Getting our son to be seen by specialists was my most difficult task. I still can’t believe all of the run around insurances make you go through. Once we finally had an approval we were scheduled to see a specialist for the first time on April 22, 2011. He requested a CAT scan. No surgery was scheduled and time just seem to be ticking. We just wanted our son to get his procedure done. We already knew what was wrong and we also knew that nothing could be fixed without surgery. We were perturbed with all of the hoops we were having to go through.
Our son was scheduled for his CAT scan four months after he was diagnosed. YES! It took this long to get an insurance approval. Waiting was stressful and frustrating. On June 7, 2011 the CAT scan was performed and no sedation was needed like planned. I fed him his bottle and rocked him to sleep. The nurse who checked us in was just an angel. I will leave out specifics about the technician who performed the procedure because she was heartless and describing her brings out the bad experiences we want to someday forget about.
The long journey continued. After the CAT scan we were asked to go see another specialist. Almost two months had to go by before we were able to do this. On August 1st we finally got to meet with a craniofacial team to decide on surgery date. The team was great. Though our fear of having our son go through surgery was always present we felt some sort of relief when they scheduled baby Nikko for surgery.
On August 23, 2011 the surgery Nikkoulous needed was finally performed. It was the most aching feeling I can ever describe. Handing our son to doctors and walking away still brings tears when we recall that day. Our baby never cried that morning. He was joyful and in high spirits as always. His charisma is what kept us going that day. We were asked to wait in the lobby and text messages were sent to my phone from his nurse to update us on the surgery. The surgery began at 10:03 AM and was completed at 12:49 PM. It was quicker than what we anticipated. At 1:25 PM my husband and I were able to see him in the recovery room. I vividly recall entering those double doors and recognizing him from behind those windows. My son was completely bald and had so many machines attached to his tiny body. It was excruciating to see such a precious angel in that phase.
As hours go by, Nikkoulous recovers admirably. The swelling is tough to behold but our son is so strong that within 48 hours of the surgery, he is discharged and ready to head on home. His sleeping schedule was off and he had to be rocked to sleep. He never wanted to be alone and wanted to be held at all times. He was sure different. As he continued to recover we noticed how he just wanted to be held. We couldn’t put him down in his crib because he’d immediately wake up and cry. My husband would lay him on his chest and Nikkolous would sleep for hours. We took turns at night. It was almost as if he were bring home a newborn once again.
Two weeks after our son was home, we returned to work. Nikkoulous seemed back to normal. He has always been a great kid. During this time we also took him to get his two- week check up. Doctors share with us that he is doing well as they had expected. We are thankful for this miracle child of ours.
Six months have gone by. He has his sixth month surgery evaluation this week and first birthday. We are excited to celebrate his first birthday. Nikkoulous will be going to Disneyland for his birthday and sharing our joys first birthday celebration on the weekend.
We continue to thank God daily for our child and everyone who has stood by us, especially Cranio Care Bears.