Craniosynostosis,,,,Proof of God's Mercy and His Grace

Hello again,
Since I vaguely covered my son's craniosynostosis I thought I would address it today. When Sweet Cheeks was born his head was oblong and also had an odd bump straight out of the back of it which after questioning the doctor we chalked up to going through the birth canal and that it would eventually correct itself. After a few days at he hospital and his head shape not changing I again questioned the doctor and was again reassured that it would correct itself. We headed home happily and spoiled our son as all new parents do. We also have a tremendously large family that helps us :)
Our next appointment after a brief hospital stay because of jaundice I had the doctor check his head again just to make sure he still thought it was okay. He informed us that he thought his head would just be a little odd shaped and that since he was a boy it wouldn't affect too much. Relieved once again to be reassured that it was only cosmetic I hurried home to share the news with the fam.
Sweet Cheeks two month check came blasting by I wondered where the time had gone. I got us all packed up and headed to our appointment with my eldest daughter Darling and my oldest son Sensitive. After a check up and some nasty shots the doctor asked if I had any questions and I said offhandedly that he could check his head shape and see if he thought it was changing. He felt of his head for what seemed to me to be an abnormal amount of time and then turned to me and said, "Do you think you can go straight to the hospital for x-rays?" which was NOT the way to keep me calm. After a brief internal (because I had too many kids with me to do the real thing) anxiety attack I asked him what was wrong and he explained that his soft spot seemed to be completely closed and that if his other sutures had followed suit he potentially could have limited space for his brain to grow and that we need to check it out immediately and possibly need to go to Children's Hospital 3 hours away in the next couple days. Deep Breaths!!
We went and had x-rays and headed home to wait for the results which we didn't get til the next day. You would think with all this technology that we have we wouldn't have to wait for tests results that make you a nervous wreck for long amounts of time, but that is another story. We received the results the next day that his sagittal suture was closed and that two more were narrow (you have 5 in all and the more that are closed the worse your prognosis). Off to Children's Hospital and after a six hour round trip and four hours in the waiting room we found out that surgery was the only cure.
Fast forward to two months later after several more appts at Children's Hospital and we go in for surgery (on Valentine's Day 2010) and relinquish our tiny little 5 mos old baby into the hands of strangers for a twelve hour surgery!! Our hearts were completely devastated. Thank God for all the support and prayers that we had or we never would have made it through that time. After we finally heard he was out of surgery it was another hour before we could see him. He was sooo swollen and in sooo much pain it was the hardest thing I ever had to see. He wasn't allowed to eat for another twenty-four hours and I could not even hold him because iv tubes were coming out of every appendage and it was too dangerous because one might come out and it was directly into an artery and he would bleed out. I finally got to hold my little man on the second day!! I cannot explain how good it felt to hold him in my arms. After kicking or pulling out 4 ivs and having to have them put back in and a total of ten days we were finally released armed with some heavy antibiotics. I missed all my other babies soo much we were ecstatic to get to see them and just spend time with them. It is funny how it is just the mundane things in life that we really missed.
Anyway, after a really long and complicated story I will say goodbye for now and I hope that our story will someday benefit another family who has to go through this terrible surgery. Feel free to contact me and ask any questions I would be more than willing to help you out with my limited knowledge.