Gavin – Sagittal


Gavin was born October 2nd 2011. I had a completely normal pregnancy until 30 weeks. I had a normal check up where they found protein in my urine and they realized I had developed preeclampsia. I was admitted to the hospital on a Friday, then on Sunday morning my blood pressure¬†shot up even higher and they put me to sleep. The next thing I knew I woke up alone, no baby, no one. It was terrifying. I had no clue how he was. But from the moment Gavin was born he was a fighter. He was supposed to be on a ventilator but he ended up breathing on his own. He is my personal miracle. He had to have a chest tube for a few days to help him breathe. He stayed in the hospital for 5 weeks but most of that time was spent teaching him how to eat, he was too small to know how to at first, and then gaining weight. When we brought him home from the hospital he had to be on caffeine to help remind him to breathe and a heart monitor. ¬†He had all of that for about 4 months. Finally we had our son home and completely fine. At his 1st check up with his pediatrician we asked her about his head shape and she told us it was just “preemie head” and it was from laying down so much in the hospital and his head would round out on his own. So we didn’t think another thing about it. Then at his 6 month check up, his pediatrician told us that his soft spot had closed and his plates in his head had fused and gave him a diagnosis of craniosynostosis. We were very frustrated since she had previously told us everything was fine. So she sent us for a CAT Scan at Arkansas Children’s Hospital. A month later we saw his craniofacial surgeon who diagnosed him further with sagittal synotosis, she also told us that his pediatrician should have diagnosed him months ago and he should already have had surgery. We were given a surgery date of July 12th and we dreaded the day as it creeped closer. Four days before surgery we met with the neurosurgeon and did pre-op labs. Then the dreaded day finally came and we were at the hospital at 5:30 am. They admitted him and brought us back to a room. We waited there until 7:30 when they wheeled my wide awake baby away from me. I thought that was hard but there was more to come. Then after 5 long hours we were finally able to see him in the PICU. As we walked back I heard screaming in a very hoarse voice but I automatically knew it was my son. I walked back there and he was so sad and in so much pain it broke my heart in two. The only thing that comforted me was other parents saying in just a few days they would be up and playing. So I kept telling myself just 3 days, just 3 days, just 3 days. It was like a chant in my head. The first few hours were horrible, me and my husband took turns standing there and rubbing his belly and comforting him. After about nine hours he started feeling a little bit better. And from there he was only getting better all the time! After 24 hours he was moved from the PICU to the Neurosurgery floor. He was starting to play a little and move around and he even smiled occasionally. That night he slept in my arms and we were both much happier. The next day, just 2 days after surgery the craniofacial surgeon came and unwrapped him and removed all the tubes and he was released and we went home. We were so happy. He mostly slept and snuggled but for a few minutes at a time he would get up and play! We were so happy! The craniofacial surgeon was amazing, he made his incision only about 2 1/2 inches long and did the whole CVR surgery from that little incision. I am so thankful that Gavin did so amazing. He hardly swelled at all and he just did amazing the whole way through. I am so proud of my little rough guy!!