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.

Introductions

Hello, I am a stay at home mother of five. We home school and study God's word daily. Most days are quite a struggle, but with God's good grace we manage to get through them :) Today was just a typical day... trying to get home school work accomplished, clean, sew for upcoming promotion for my shop, and most importantly trying to find much needed and hard to come by time to spend with each child. While I am on the subject I will introduce my husband and five precious children:

My husband Mr. Railroad and I have been together since high school. Although we have had our ups and downs I wouldn't want to be with anyone else. We took the vows for better or worse and have seen the worse so I am looking forward to the betters lol :) He can always make me laugh and is great with the kids. They love him dearly more than he will ever know.

First runner up, we have out only girl "Darling". She is 9 and is bossy as all girls should be :)and is the biggest help around the house and takes great care of all her brothers. Her problem is her mouth.. it tends to run away with her either being sassy or just plain talkative...and she could talk for hours to anyone! I don't know what I would do without her. She is my best friend.

Second in line we have "Tenderheart", he is a great kid and is especially caring and loving..always the first to give me a hug and never misses a day. He is also THE BIGGEST PROCRASTINATOR and tends to spend hours doing what should take minutes especially when it comes to homework. He is always smiling and is super easy to please.




Third comes "Wild Thing"... oh where to start... he is five and can bounce off the walls all day long!! His mind is constantly wondering as is his body. Anything can be a distraction. He gets away with WAY too much because he has the cutest smile and uses it whenever he's done something naughty. He has a heart that is too easily broken and is my smallest of the bunch (my three year old is about to pass him up. This picture says it all!



Fourth comes "Gentle Giant", a 3 year old, and he is quite large but the biggest part of him is his heart. He is extremely mannerly and is always sure to tell me, "thank you, mommy" for such things as wiping the unmentionables off his bottom :) or "Please give me food" lol (Although we are trying desperately to get him potty trained no luck yet.) He is very stubborn and will try to get his way even if he has to cut off his nose to smite his face.


Finally, we have "Sweet Cheeks" he is recovering from craniosynostosis surgery. His head was misshapen since birth and he had his surgery on Valentine's Day 2011 to remove his skull and replace it molded into a better shape. Love, love, love all the doctors at Cardinal Glennon!! He is now six mos. old and doing great! He has the fattest little cheeks that we all make sure to kiss really, really often! Can't wait to see what kind of lil man he'll grow up to become.

It was nice to get acquainted with you. Stop by often :) This is all I have for now off to do more schoolwork and hopefully get out with the kids to enjoy this beautiful spring day!!