Brycen – Sagittal


Brycen’s Cranio Journey… On August 5th 2011 my husband and I were blessed with the most precious baby….Brycen. He was perfect. I had had a very rough pregnancy. I had high blood pressure and was on bed rest through out my last 5 months of pregnancy. I was so happy to finally be holding my precious baby. Everything was great, all the doctors checked him out and sent us home with a perfect little boy. The only issues he had was acid reflux until his 2 month check up. We took baby Brycen to his doctor for his two month check up and shots. I was so scared of him getting shots I made my husband come home from work to go with us, and I was sure I was going to cry like a baby. Well within two minutes of the doctors exam he said words I will never forget. “Have you noticed these ridges on the sides of his head?” “Well his top soft spot is very hard to find…” And then he said it….”craniosynostosis.” In my mind I am going cranio what??? Noooo… my baby is perfect this doctor is crazy. He then sent us straight to the place next door to get x-rays of his head. I can remember sitting in the waiting room literally sweating as we waited to hear the results. And the whole time I was thinking there is nothing wrong with his head. He is PERFECT…this could not happen to us….could it? And within a few moments our doctor was on the phone telling me “it appears your son has sagittal cranio…” He said a lot more but that’s all I heard. Tears ran down my face and I cried so hard I barely heard anything he said. I heard the word surgery and I lost it. I ran out of the building with my husband holding Brycen so tight I am sure he could not breathe. NO it is not fair. NOT Brycen this is not real. God WHY are you doing this to us!?!?!? I was so angry at the world, God, the doctor, myself, just everything…it just did not seem real. But as time went on I soon realized it was real, and it happened to a lot of people. I found Cranio Care Bears, and found a lot of friends on the Facebook page for cranio awareness. I began my research on the whole topic and what this meant for us. Without my cranio friends I WOULD NOT have made it through all of this. All the kind words and prayers helped more than anyone would ever believe. Halloween, Thanksgiving, Christmas all seemed to fly by. January the 19th was our surgery date. I wanted the date to hurry up and come so we could be “on the other side” But at the same time I wanted time to stop so my sweet little man would never have to go through this surgery. Well time surely did not stop it seemed to fly by even faster, and before I knew it the day had came. After all my research, talking to other moms, and praying non-stop I had realized I was not being punished, it was not our fault, and God had a plan for us and Brycen. And with his guidance we were going to be just fine. I remember waking up the morning of surgery and just wanting to stay in bed and hold Brycen so close, and tight that NO one could take him from me. I had all my family there with me and my husband to support us which made things soooo much easier and of course all my Facebook cranio moms sent me positive encouraging messages alllll day long. We arrived at the hospital, had breakfast, and began to pray. Things were running behind that morning so they didn’t call us until 11:00. My husband and I went upstairs where the nurses and staff began to check us in and get Brycen ready. It seemed like everything was happening in slow motion. And everyone was talking like the people on Charlie Brown. “wwhha whhha whhaaaa” is all I heard. We talked to a lot of surgeons and doctors who all told us the same thing over and over. And finally the time had come to hand my son, my best friend, my heart and soul over to a complete stranger to operate on him. My heart stopped, my throat closed up, and I could not breathe. All I could do was hug him tell him how much we love him, and let him go. I cried and cried. Brycen was only 5 months old. He had no clue what was going on, why we were so upset, and most of all why we left him. We had AMAZING surgeons at UVA in Charlottesville VA. Dr John Jane JR, and Dr Kant Linn. All their nurses were so sweet to us and the doctors themselves called us throughout the surgery with updates. Which helped but the time we were away from him felt like forever. Finally around 4pm they called us up to the PICU and said we would be able to see him very soon. I remember walking down that long hallway wanting to run, scream “Brycen Mommy’s here!! I am here don’t worry anymore!!!” But of course I could not. Finally we had made it to his room. His little head was wrapped in purple wrap, and he already began to swell. He had IV’s and monitors from one end to the other. But it did not matter, he was OKAY!! My husband and I sat with him and talked to him as he slept. I was so happy and thankful it was over and we were on the other side! The first night was very hard in the hospital I wanted to sleep but would not dare leave his side. I sat all night holding his little hand and praying to God for a safe recovery. And God heard and answered that prayer. By Saturday, we were out of the picu and on the regular floor. Brycens doctor told us “he won’t open his eyes until at least Monday.” Well Brycen had other plans…it was not a few hours after the doctor had left that he opened his left eye. And by 5pm Saturday he had both eyes open and was taking wagon rides around the hospital. GOD IS GOOD! The weekend flew by and with everyday came progress for Brycen. He got well with great speed, and on Monday we were headed home. After being gone so long we were all glad to be home in our own beds! One thing the doctors don’t warn you about is the way your baby will sleep after surgery. Every night for 2 weeks Brycen woke up anywhere from 2-5 times a night screaming out like he was afraid of something. He fought going to sleep also like he was afraid. I think he remembered having his eyes swollen shut. But soon after the two week mark he began sleeping and eating just the way he did before surgery. And as far as his personality and happiness…he was smiling at us with his eyes swollen shut. :) I must say my son is my hero! He was so strong and determined through the entire surgery and recovery it just amazed me to say the least. We are now almost three weeks post op (2-4-2012) and he his doing great. He just learned to roll over this week and he just laughs and grins when he does it. We are truly blessed with this amazing little boy…WE LOVE OUR CRANIO BABY!!!!