I have been trying to post about this for a couple of days now but finally got a minute to do so. The major surgery that Bentley could possibly face is on her skull NOT her heart. I know some of you know the details but many of you do not... so everyone has assumed it was her heart which is understandable. I guess this is why I have had such a hard time dealing with the possibility of this condition and the road it might lead us down. Don't get me wrong I would also be terribly crushed if there was something going on with her heart but this is a whole new condition. 2 instead of 1.. both completely different and not related. That is a lot to sink in. I have had all the same feelings and emotions as I did with her heart which is why I did not want to talk about any details... I think us moms sort of go through this phase.. if we don't talk about it or speak the words, then it's not true or will not happen (denial). Or that's how I have always felt anyway... even with Bentley's heart which is probably why I never mentioned anything about it until she was almost 5 months old.
Last month I noticed a bump on Bentley's head.. for no reason at all. It is not just a regular bump, it is a raised area that goes from her soft spot down to her forehead.. in a straight line. It is not huge but it is there enough to alarm us. So I took Bentley to her pedi's office to have it checked out. Her pedi was not in so we saw another in the office. He felt it, and instantly thought it was Craniosynostosis... this is a condition where the skull is not growing correctly. Our skulls are made up of several bones, not all connected at first.. Craniosunostosis is basically where the bones close or fuse together before they should so the brain is not able to grow as it should. The only way to treat this is a major surgery on the skull. As you can imagine this is a huge surgery and very serious. The pedi decided to do an xray to confirm his suspicions... a few days later the xray came back normal!!! Thank GOD!!! We were an absolute mess and we were so happy to have normal results so we could move on past this. A couple of weeks later Bentley had her 15 month well checkup... we were seen by her normal pedi so I mentioned everything to her to ask her thoughts on everything. Because the fact still remains that this bump IS there. Her pedi felt it and she instantly agreed... Craniosyntosis... she implied that the xray has to be wrong so she ordered a CT Scan for confirmation. She went on to tell us more about the surgery needed, etc. We just thought we were a mess before... after 2 pedi's telling us this information and feeling so strongly about it we were a huge mess at this point. We had to wait days to have the CT Scan because of Thanksgiving and a few more for results. The wait has got to be one of the worse parts... the unknown... it's such an awful feeling thinking your child has a medical condition and not even knowing a whole lot about the specific condition. I now know the basics of Craniosyntosis but I'm still clueless about it. Just the thought of another major surgery makes me cringe. This past month has been a HUGE emotional roller coaster to say the least.
We were told we would have to wait 3-4 days for the CT Scan results. Not easy. A sweet blog reader of mine (Wendy) emailed me yesterday informing me that she works in radiology and it takes about 24 hours for CT Scan results to come back... so the rest of that time has to be pretty much waiting on the Dr. office to get and give results. 3 days for that is too long for me, she suggested I call them that they should have results. I called once in the morning and once in the afternoon just before they closed. A nurse finally called me after closing informing me she tracked the results down. Everything looks GOOD!!! THANK GOD!!!! She said they are close (not closed) but there is plenty room for growing which is what the main problem is with Craniosyntosis. My jaw dropped, I was convinced she had this condition... I was instantly bouncing off the walls, Ryan and me both!!! We were and are SOOO relieved!!! She said they will watch it closely at our future appointments but there is no reason to see a neurologist at this point. PRAISE GOD!!!!!
Thank you all sooooo much for your prayers, support, positive thoughts, EVERYTHING!!! There is no fear like thinking your child has a serious medical condition. (or having a child with one) It is plain flat SCARY and there is no other way to describe it. We are so grateful for you all!!!!!
Oh, and the bump or raised area that is there... it's called ridging. Apparently, it is the shape of the bone. I am really not familiar with ridging at all. But we were told there is nothing to worry about, everything is okay. And we couldn't be happier!!!!
Here is more information on Craniosyntosis.
1 day ago