Wednesday, July 10, 2013

Here we go

Please pray for me

Well, the nerves are starting to kick in high gear. We received confirmation of Alice's surgery this morning, it will definitely be on Friday. We have a pre op appointment with Dr Magge on Thursday as well as a CT scan. We met with the company that is doing the helmet fitting this morning and apparently that is going to be like our second home for a while, with all of these helmet appointments, it's alot but I still feel like this is the right move.

So, what exactly is going to be done with the endoscopic surgery? Here is more info...

This surgery is the least invasive approach. For this surgery to be the most successful it is advised that surgery be performed on an affected infant before four months old and no later than six months old.  Surgeons will utilize an endoscope through two small incisions measuring about 1.5 inches each at the top of the head. A segment of bone is removed near the fused bone and in a few other places which releases the fusion. No plating or reshaping is performed. (like in the larger surgery) Instead, in the first week after surgery, a custom molding helmet is made, which the patient wears for up to a year.

The pro's of the endoscopic surgery are:

-Decreased operative time (1.5 hours or less vs. usually 5 or more hours for the larger surgery)
-There is usually no need for a blood transfusion, and much decreased blood loss
-No plates or screws are needed
-Shortened hospital stay (vs larger surgery)
-Smaller incisions which have significantly reduced scars

  I am so overwhelmed right now, I'm having a hard time functioning. I have so much to do but all I want to do is hold Alice.  I am sad about leaving my other two children as well. I know they are worried in their own way about their baby sister and have anxiety about us leaving them. We have never left them for more than a night so that's going to be hard, but they will be in good hands. Tomorrow night I want to spend some quality time with Alice, maybe even take her for a swim in the pool at the hotel and just try to forget what is about to happen for a little while. It's going to be a rough night...not being able to feed her if she wakes up or in the morning before surgery.  Jason and I both broke down crying last night just imagining that moment when they take her back for surgery...that's going to be very hard on us both. Then after the surgery, seeing her and not really knowing what to expect...hearing her panicking cry is going to make me crumble into a million pieces. I am trying to be strong but in reality I am just not that strong of a person. I'm trying to make a list of things to bring to comfort her, to make her feel like she's at home, even though I suspect she won't be able to see, at least out of one eye. She will be swollen I know, I just don't know to what extent. 

Please pray for Alice Mary, pray that she's not in pain and that she's not scared and that all goes well with the surgery. Pray for Jason and I to have the strength to get through this. We really appreciate all the comments, messages and texts that we have received from family and friends and even complete strangers. It really means so much to us that you are keeping our baby girl in your prayers. I will try to update the blog when I am in DC after the surgery.  Thank you all for your support.