Thursday, March 13, 2014

A Momma's Nerves

I couldn't sleep at all last night...I kept tossing and turning and WORRYING. Leading up to this appointment I was extremely nervous. Over the past few months there has been very minimal growth of Alice's head...which could be a sign of a problem like refusing of the left coronal suture. To add to my nerves...Alice's followup appointment had been moved due to a snow storm a couple weeks ago and was rescheduled at the hospital where Alice had surgery in downtown DC instead of the usual office we go to just outside of the city. As I tossed and turned last night I just kept thinking about her surgery and how scary it was for us...and returning to the hospital where she had the surgery just added to my uneasy feelings.

My husband, Alice and I took a day trip to DC...did a little sight seeing on the way in, some accidentally as we took wrong turns and ran into road work but we made it to the hospital with an hour to spare. Just enough time to grab lunch in the hospital cafeteria and take Alice in the hospital Atrium/lobby where I wished I could have taken her last time...but she was stuck in the hospital bed.

I knew she would love them!

They added new balloons since we were there in July for her surgery


So Dr Magge measured her head and took pictures. He asked about how she was doing developmentally and how we thought she looked. I told him about my concerns about Alice's eyes recently and that I had them checked. I have heard alot about babies with unicoronal (left or right coronal) having eye problems. He explained to me that most of those cases are babies that had CVR (reconstructive skull surgery). There are studies to support that babies that have the endoscopic surgery don't seem to be as affected since releasing the suture that is fused helps with the asymmetry and reduces the chances of eye problems. We told him we noticed very early on how quickly her nose and mouth asymmetry was corrected. He then asked us how we think her forehead/eyebrow looks. We told him that it without a doubt it has improved a great deal...but it was still flat looking. We knew going into this endoscopic surgery that her results may not be as good as a baby that had the procedure done at 3 months old but we were willing to risk the cosmetic aspect of it to avoid reconstructive skull surgery. He said he could feel that the bone was starting to fill back in where he did the craniectemy but that it wouldn't affect her progress. The plan is to keep Alice in her helmet until she is 18 months old, although he will followup and keep an eye on her and could possibly extend it depending on how's she is doing. As Alice continues growing...her brain will push her skull outward and continue to push her affected side outward. With time, her skull will not appear as flat and her brow bone will eventually come out, even though it is recessed now. There isn't a medical need to do further surgery on would only be cosmetic at this point, unless something changes.We won't be considering another surgery unless Dr Magge thinks she NEEDS it. The reason her head has not been growing dramatically is just because she is in the lower percentile for growth...her head is in the 25th percentile. She has a small head but it is growing gradually just like the rest of her. We call her our little runt :)

My point to this post is not to only let my friends and family know how the appointment went but to also let those of you who have stumbled across this blog to know how happy we are that we chose endoscopic surgery for our child. There are so many posts I ran across when I did my research in the beginning that said babies who have the endoscopic surgery are more likely to have to have more surgery....well, this is not true in most cases. Endoscopic surgery literally stops Craniosynostosis in it's tracks...when your baby's affected suture is released during surgery, amazing things begin to happen. We saw almost instant results with Alice's facial asymmetry....and then the helmet started to do it's magic. Some people may look at the helmet as an inconvenience to them...but it's not to your baby! Your baby adapts amazingly well...and it becomes part of them....and IT WORKS! Parents adapt too...the helmet becomes the new normal after a few months. My husband and I always talk about how different she looks without it because we are so used to her with it on...we actually get nervous when it is off while we clean it. It definitely comes in handy for a baby learning to walk that falls constantly :) Please consider this option for your child if you are given the opportunity. It is truly amazing how far our sweet Alice has come!

Thank you so much to my friends and family and even complete strangers who sent positive vibes and prayers our way as this nervous Mommy awaited this appointment. So happy that Dr Magge helped to ease my fears...I feel so much better! One thing that will never change much you worry about your baby after they have been diagnosed Craniosynostosis...that fear is always there... 

Just 8 months into helmet therapy! She has improved so much!