Ellasyn was born May 11, 2011 and she was every bit of perfection I had dreamed of. She was born the day before her due date, and only weighed 5.12 lb! We couldn’t believe how small she was :) I delivered via c-section and everything checked out perfectly with her and I, so we left the hospital after a normal 3 day stay.
At her 2 month check up her pediatrician noticed that her front soft spot was smaller than normal and wanted us back in for a re-check at 3 months instead of 4. Worry and fears started immediately. At the 3 month check, the pedi said that her soft spot hadn’t changed much, but now her suture on top of her head felt closed, as there was a slight ridge there. Her head was starting to grow more narrow instead of round. We had to go for cat scans later that week, where we found out she did indeed have Craniosynostosis. The next week we met with the neurosurgeon and his PA who set up a surgery date and explained what they would be doing to my baby’s head, what a nightmare!! That meeting was scary! I’m so glad I had my husband there, as I only remember a few select words that they said.
September 27th 2011, at 4 1/2 months old, Ellasyn had her Sagittal Cranioctomy with bilateral repair. She was away from us for about 4 hours, and only 1 1/2 hours of that was actual surgery time. She needed a blood transfusion during surgery, which I learned is very typical. She also needed a transfusion the day after surgery in the PICU, also pretty typical they said. We were in the PICU for 2 days and nights, and on the regular peds floor for an additional 4 days, (should have went home a day earlier but they had a neuro emergency and couldn’t get us discharged). Her head wrap was removed on day 4, they just had a long bandaid covering the incision. We went back 2 weeks post op to have the stitches removed, and we were free!! No more bandage!
I am so glad that I did a massive amount of research prior to surgery, and met with other cranio famililes, and joined cranio groups online, or I never would have been prepared for the journey during and after surgery. Seeing her swollen and bruised, hoarse from the breathing tube, and all the scary things that came with it. And, when everyone told me that I would be so proud of her, and she would bounce back so fast, they were right! I am so proud of her, she did amazing! It was incredibly hard seeing her in pain that way, but seeing her that way, I knew we were on the other side and surgery was over and now we just had to heal. And she healed great! Now, Ellasyn is back to her normal self, over a hear old and such a happy baby. She is right on track developmentally, and even ahead is most areas. We are so blessed.
I can’t thank the Cranio organizations enough for their help and support during this, it truly made it easier.