Wednesday, October 30, 2013

Thoughts of a Cranio Mommy

Yesterday I went to followup with the neurosurgeon who did my back surgery almost two years ago. He works for the same practice where Alice was referred initially. I really didn't think that I would feel emotional about being back in that building but I did... I guess it's because I went there that day and remember sitting in the waiting room, not nervous at all...assuming that this was just precautionary and everything was fine. Even as the doctor was talking to me...I thought to myself...ok, worse case scenario she may need a helmet to help mold her head in the right shape. I truly was blindsided and unprepared to hear the words that came out of her mouth. I sought a second opinion a week later and got the official diagnosis then, but her journey started on that first day...the day I heard the word CRANIOSYNOSTOSIS...cranio what?!? It was completely foreign to me...I couldn't even pronounce it. Why are mothers not educated about this so they can look for this in their newborn babies to help get them treatment...the earlier it is caught, the better.

1st trip to the pumpkin patch

I have beat myself up over the months about Alice's diagnosis. I knew something wasn't right with her forehead...and I shrugged it off to childbirth against my better judgement. It was so unlike me to do this...I usually bring up every concern to the pediatrician. I guess I felt like I was being paranoid and that it would correct itself in time...I had no knowledge that a baby's skull could fuse too early. Thank God that she was able to have the endoscopic surgery...if she hadn't, I may have never been able to sleep again. I look back at pictures from when she was weeks old and see it...why the heck didn't I say something? I kick myself everyday for not looking into it sooner but I am thankful that she was able to get the less invasive surgery even if I really did have to fight for it.

Apple picking in the mountains

When I began this blog I wasn't sure which direction we were going endoscopic or CVR (cranial vault reconstruction) All I knew is that I felt a strong feeling that I needed to document everything and put it out there and I am so glad that I did. I have received so many messages and had so many people reach out to me...some telling me that they follow Alice's story and they talk about Alice and keep their friends updated. Others have contacted me about surgery questions....but what really got me and made me realize that this blog is doing what I sought out for it to do...was when I received a message thanking me for creating the blog...and this is why...(message below)

" I wanted to thank you as your blog helped my son's early diagnosis …I knew something was not right with his head but didn't worry too much as Dr.’s attributed it to birthing process and said it will be okay in few weeks…

Just out of curiosity I started googling on symptoms and bumped on your blog….his head shape and other facial asymmetry was similar to pictures you had posted….that’s when I knew it was more serious and started talking to specialist …"

I can't even describe the emotions I felt when I read this...happy tears instantly rolled down my face. This was confirmation that sharing Alice's story was the absolute right thing to do. Originally after Alice's first appointment, when I knew the there was a possibility that she would be diagnosed with Craniosynostosis and require surgery, I shut down emotionally. I kept it to myself, I didn't want to share it with many people...I was a mess. I made privacy changes on my personal networking pages, like facebook,  so that only immediate family would see what was going on when I was ready to share it. I finally did announce it to some...and waited until after Alice's surgery was over to share it with others. Why? I don't know...I guess I feared the worse...I was terrified at the thought of losing my precious baby girl. From the second I saw her face, she was perfect...she truly was a piece of my family that I didn't realize we were missing. She has blessed us and taught us so much in her short 9 months here with us. She has done so well and really is the most easy going and laid back baby. I don't know what I would do without her...and the thought of losing her terrified me and consumed me...up until the second they took her out of our arms and back to the operating wasn't until I saw her face in the recovery room where I finally took a breath. Even then...I wasn't sure she was going to be ok...for 5 hours I watched her lay limp and white as a ghost...I was terrified. Why wasn't she waking up...was she ok? Did she need a transfusion? Would I ever see that sweet smile again? The fears just kept coming...I needed to see my baby girl's eyes and see her smile, so I would know that she was ok. In the middle of the night, she answered my prayers. She was playing with a toy and smiling around 3am, about 12 hours after surgery. I have been through so many hard times in my life...many within just a year or two apart from each other....but hearing the words "your child needs surgery" sends a chill to your spine like no other...I have never felt the emotions that I felt that day...the fear, the thought that I would give my own life to save hers if I could. We are so blessed that Alice came along and is able to help us spread the word about Craniosynostosis. Thank you God for allowing me to be the mother of this sweet baby girl.

My advice for parents out there...if you feel in your gut that something isn't right with your baby or child do not hesitate to bring it up! Even if your doctor says its nothing but you feel in your gut that it is something, get a second opinion or third opinion. Even after diagnosed you owe it to your child to get many opinions. If I had accepted the word of the first doctor....where would we be? I was told that we should watch her for a few months and see if things got better or worse...if I had done that she would have missed the possibility for the endoscopic surgery all together. I can't stress how important it is to get many opinions! You have to be your child's don't just accept the first thing that is said to you by the first doctor. Fight for your child!

Alice's Halloween costume. She won a $25 gift card in a costume contest!

Pumpkin Baby :-)

Alice with her big brother and big sister