Braydon – Sagittal

1005851_874536484941_413658298_nBraydon Nicholas Triscari was born April 25th 2013 via scheduled c-section. Braydon is my second child I had a perfectly normal healthy pregnancy, when he came out and we saw him he was just that… a perfectly healthy 8lbs 110z beautiful baby boy. We all fell immediately in love with Braydon and were so happy to have this beautiful baby in our arms meeting his big brothers everything seemed so perfect. It was two days later that my world was turned upside down. On April 27th, Braydon’s pediatrician came in to discharge Braydon so we could go home.  This was the first time his actual Dr. was seeing him and the second she came in the room and took one look at him she said “why is his head shaped like that” and I remember looking at her like she was crazy and said “shaped like what” I hadn’t noticed anything wrong with the shape of his head.  She then began feeling around saying how she didn’t feel any soft spots and she felt a ridge along the top of his head showing me and having me feel as well and of course as much as I wished she was wrong she was right and then she said the word that changed my world all in a matter of seconds “craniosynostosis”. She began to tell me that she believed Braydon had a condition called craniosynostosis and that we would need to see a neurosurgeon to confirm this diagnosis. I can’t even begin to describe how I felt after hearing all this. I felt like this couldn’t be real… I mean I was a 29 year old, had a healthy normal pregnancy and I was just supposed to be going home with this beautiful perfect little boy and now I was having conversations about nuerosurgery…. this couldn’t be happening. A few hours later we got to bring Braydon home were I spent my first night home with my new baby on the internet searching everything about craniosynostosis and convincing myself that maybe it was all some mistake and we would see the surgeons and they would say that Braydon wouldn’t need surgery after all. Exactly one week after Braydon was born we had our appointment with the neurosurgeon Dr. Harter at NYU and he confirmed what  I was afraid to face all week that Braydon did indeed have Sagittal Craniosynostosis and he then set us up to meet with a Craniofacial plastic surgeon Dr. Staffenberg also at NYU. After meeting with both Drs when Braydon was exactly one week old, we had made the plan to go ahead with the CVR surgery when Braydon was a few months older. So now it was time to go home accept the inevitable and wait. There were so many emotions that went along with finding out that my baby was going to need to have surgery not just surgery but skull surgery. I felt like for a long time all I could do was cry and cry and cry then came the anger… why my baby? Why is this happening to us? Then finally acceptance set in and I had to say this is happening and there is nothing I can do to change that so I can’t spend the next couple of months like this. I mean it was definitely not an easy time for me I would always have my moments when my sadness got the best of me and I would breakdown and to say I was stressed out worried is an understatement but we all managed to live life like normal. Within no time we had a surgery date set and then before I knew it the day came… September 4th 2013 Braydon who was about 4 1/2 months old had his surgery. There are no words to describe the feeling of having to hand your baby over to nurses and doctors.  It was by far the hardest thing I have ever had to do and my cries could probably be heard all the way to the next floor, but I did it and thanks to my husband my amazing family who stayed with me the entire time the next couple of hours seemed to go pretty quick.  Then we received word Braydon was out of surgery and did amazing and was headed to ICU.  The relief I felt was unreal! I felt like I could breathe after 4 and 1/2 months of holding it in, it was over, it was done, and my baby made it through! Braydon received a small transfusion during surgery but other then that things went perfectly. We were finally able to go see our baby.  Laying eyes on him in that bed all bandaged up, broke and warmed my heart all at once.  I hated to think what he had been through his pain but at the same time he looked like such an angel… it was amazing just to see him. Over our stay in the hospital we had some ups and downs.  At one point Braydon needed another transfusion but thanks to all the amazing Drs and nurses at NYU things got better and after 5 days in the hospital Braydon was finally ready to go home. Once we returned home and Braydon was back with his big brother he seemed to get right back to himself smiling laughing eating normally. It took about two weeks for his sleeping to get back to normal but other then that he is doing amazing looks amazing and is just such a beautiful happy almost 6 month old baby and if it weren’t for the scar across his head you would never know anything happened. I thank Cranio Care Bears for their support during this time and for having this site to see these stories… I know reading them helped me and I hope mine does the same for others. And I can’t thank my family my friends especially my husband and mother enough without having such amazing people around me I don’t know how I could have handled all of this. And to all the moms out there just hang in there and be strong and here is my email if anyone especially anyone in the New York/Long Island area needs another mom to talk to
<3 Kelly
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