Craniosynostosis Information

I wanted to post a link for people who may come across this blog and want more info on cranio. This is actually the link I had found when I really knew that Gabby had craniosynostosis (before MD's confirmed). It is kind of graphic in areas so beware. It shows the shapes of heads babies would have with all the different sutures fused.

http://www.craniofacialcenter.com/images/craniosyn.pdf

One more month

Man, does time go slowly when you want something over and done with! One month from now Gabby will be out of surgery and on to recovery. My mom always says that dealing with the pain that comes after a surgery in not nearly as bad as the waiting, anticipation, and actual surgery. Once it is over you can deal with it. I am thinking I agree. I am trying to remember what life was like without worrying about what was wrong with my baby. I was thinking this morning about how upset I was when my oldest son, Alex, had to get glasses. He was about 19 months old. I cried and cried about it. Glasses. Now I can see how ridiculous that was. He is not blind. He can see, just not so great out of one eye and it might get better. During that whole ordeal, a nurse did say to me though that they were checking for cancer because my pediatrician had saw something not quite normal in his pupil or something. So that is all I heard- cancer. Anyway, it was not cancer, just glasses, and I still cried when he put them on for the first time. He is really adorable in them. But anyway, I cannot wait until after the surgery so that I can (hopefully) get back to life as normal.

Today I met with my surgery sponser that I met through the Cappskids organization. Her name is Cindy and she is wonderful! Cindy, if you are reading this- thank you so much for all your information, sharing your family with me, and for being there for support. I truely appreciate it.

I was able to get a better picture of what the surgery entails from a parents standpoint. I got to see pictures of her beautiful baby recovering from his surgery. It will be helpful to be prepared for what Gabby will look like when she is brought out of surgery. I found out that there will be two drains coming out of her head to drain the extra blood and her head will remain all wraped up for 2 or 3 days after the surgery. She will have to have a catheter and she will have the heart monitors on the whole while she is in the hospital as well as an IV. I am really hoping her eyes don't both swell shut as that is what the doctors say the babies get really pissed about. It would be scary for her if she wakes up and cannot see. With having the orbital advancement done though, she is most probably going to swell shut in both eyes and bruise as well. I hope that at least her other eye won't be swollen.

So as for more positive info Gabby is soooo close to crawling! She rocks back and forth, back and forth and rabbit hops her back legs forward, and then procceds to fall flat on her face. Today she rocked and started picking her arm up in the air- so she is begining to get that she needs to pick up her arms to move. She smiles all day and loves to watch her big brother. Alex can get her rolling with laughter without really doing to much- he loves that!

So our next step is on Monday to call and get Mark and Tricia's appointments made at the blood bank (now that our 30 days is up). I got a letter in the mail today confirming her surgery date and has her pre-op appointment scheduled for Feb. 19th. Let's hope she stays healthy- no cold's, coughs, or fevers!!

Cranio thoughts

So I have been reading a lot of other peoples stories on how they came to the diagnosis of Craniosynostosis. It is truely heartbreaking to read some stories. In some cases, if craniosynostosis is not treated early enough it can lead to developmental delays and learning disabilities along with a bunch of other things. You would think that pediatricians would have a good understanding of this condition, especially since it really is a visual issue- I mean you can look at their heads and see that the shape is not quite right. Maybe there are many reasons for this- I'm no doctor, but you think you would rule out some things, or refer them to someone who would have more experience in this area. Many people have been the ones who did the research themselves and saw pictures of other children who looked like theirs and had to fight to get doctors to do the proper testing to confirm they were right. One google search lead me to find a picture of another baby that really looked just how Gabby looked. You would think doctors could do the same thing on some medical site or something.

We could have been lead down the wrong path pretty easily too. At her 2 week appointment our pediatrian thought that Gabby's face was asymetrical and that we would just keep an eye on things. At her 2 month appointment she thought that it was improving, which I think was Gabby just getting a little fatter and filling out a little more. She thought that she may have to wear a helmet to make her head more round. Between her 2 and 4 month appointment she had a nasty cold and I brought her into the doctor. My regular ped was out so we saw a different one. She remembered Gabby from the hospital- I guess my ped had her check her out too. She started talking about how Gabby will probably just need a bit of plastic surgery which is quite invasive in a baby so small- oh and she has an ear infection. Well, maybe this is not exactly how it went down, but this is what I heard. This is when I went home and started my google searching. Sure enough, there was a baby who looked like Gabby and here was the surgery they were doing to correct it. Not a good sight to see when I was just doing a little perusing for some info. The pictures were very graffic and I really freaked out. We then had Gabby's 4 month appointment and now my doctor thought it was time to see a neurosurgeon. I wonder if her partner- the doctor we had seen a week or 2 earlier- had not talked to her if she would have refered us or not? Who knows I guess. Anyway, she refered us to a neurosurgeon here in Green Bay. I asked if he was a pediatric neuro and she said no. We then pushed to go straight to Children's Hosptial which she agreed with. What if we would have just went along with her first recommendation and this guy would not have known what he was doing because he see's adults and may have no experience with craniosynostosis. We could be in the same boat as the other's with incorrect information and a baby who would suffer because of it. I guess I need to let go of the what if's and be happy to know what is going on. I just feel for those who tried so hard to get some information and answers for their babies, and their doctors failed them.