Through the network of La Leche League leaders, I was able to connect with another mom whose son had craniosynostosis surgery. He had the same sutures closed as Ben and she shared her experience with me. To respect her privacy I won't include many details, but she had a positive nursing experience and stressed the importance of having a good pump in case he needs to be bottle fed for the first day or two after surgery. She also warned of the first 24-48 hours being very difficult to go through due to the swelling of his face and head.
The more concerning part of our conversation came from her discussion of his headaches and aggressive behavior following surgery (within the following two years). Josh and my mom both believe this anecdotal situation is not related to the surgery itself, but to the individual situation. Either way it is scary to think of any long-term consequences of the surgery, especially related to development or behavior.
This family chose craniosacral therapy to resolve these issues for their child. I know this is a controversial thing to say, but in general I am skeptical of holistic therapies. I may change my mind when I experience or encounter first hand, it making a huge difference in someone's life. But I have my reservations about spending hundreds or thousands of dollars on lightly researched treatments. At the same time I can see how desperate families would be willing to try a myriad of treatments to have a solution for a hurting child. And I am happy for anyone if alternative therapies worked in their situation.
No matter our differences, I am so appreciative of LLL to connect me with another mother with similar experiences and I gained a great deal of information and reassurance about how the surgery will go. I also have additional questions now, to bring to the surgeon on Monday's appointment.
Ben wearing pjs from Grandma Sherry and Grandpa Steve