Monday, December 2, 2013

Motherhood and decisions


Being a mother is such a blessing and so rewarding, I love being a mother to my 3 babies. Until you become a mother, you just have no idea how much your life changes. The way you look at the world and the decisions you make...everything is completely different. You worry about your children all of the time, about every little thing....and I think Alice's diagnosis and surgery made me worry even more. I look at Alice's head and worry constantly...terrified at the idea of her having to have another surgery. Worried that her skull isn't growing correctly. I have been nervous for weeks approaching her followup appointment.


Alice's first Thanksgiving

Today we saw Dr Magge in DC for Alice's followup. She is 4 and a half months post op. Dr Magge took measurements of her head today and her skull is progressively growing the way that is should...Thank goodness! He think she looks great and that she will continue to do well. Alice was a little older than most babies that typically have endoscopic surgery...but in his opinion, Alice had a milder case of Left Coronal Craniosynostosis. ..so that should help things. We were originally told Alice would be in her helmet for 18 months....or so we thought. ..but it turns out the we misunderstood Dr Magge! Alice will be in the helmet until she is 18 months old...which has her being out of the helmet next summer...woo hoo! That is excellent news considering we thought she would be in it until she was almost 2. So we are SUPER EXCITED about that and I expect a huge celebration that day! Praying that this whole Cranio experience will be behind us that day...

Alice at her appt today with her doll. A lady makes these dolls for all of the kids. They are wearing little hospital gowns....what a sweet thing to do!

For those of you out there that may have stumbled across this blog in hopes of making a decision between endoscopic surgery or CVR surgery for your child. I just want you to know how happy we are with our decision. I chose not to put my baby through a reconstructive surgery and I fought hard for this endoscopic surgery. I met a sweet lady that made up my mind for me on a cranio forum. She simply said...

" I don't know how much you have read about endo but it tends to have a shorter hospital stay and recovery period, less blood loss and although the helmet can be challenging most babes and parents get used to it pretty quickly. I don't know of any endo parents who wish they had done CVR but I do know some CVR parents who wish they had been able to do endo(myself included)."

This is what ultimately made my mind up and made me realize that fighting to the endoscopic surgery was what I needed to do. So I did....I fought, I cried, I waited , I cried, I got angry...but I won...lots of hard work on my part with the help of others but we got our baby the treatment she needed. A friend of mine said..."endoscopic surgery stops Craniosynostosis in it's tracks" and it does. I started to see my baby transforming right before the surgery. ...and I know that she would have only gotten worse if we had waited 6 more months for the larger surgery. Instead once the doctor opened that suture up and allowed the brain and skull to grow as it should...her deformation stopped....possibly preventing further problems such as eye problems, pressure on her brain, developmental problems etc. Please consider endoscopic surgery if your child is given that option....not everyone has a choice.

Snoozing on the drive home