See You On the Other Side...

***If this is your first time visiting the blog, you may want to start with the first entry in the March 2013 Blog Archive called "The Beginning...the News" to be up to speed.***

Payton, after the last blog entry a week ago, you may be wondering the million dollar question, "Is everyone still healthy?"  YES!  We made it to the eve of our trip to Denver for your surgery Thursday and you are healthy.  I have no idea how with the amount of snot your brother produced in the past two weeks!  But miracle or not, you never got what he had and we are all healthy. Must've been all those prayers from friends and family, and maybe a few hundred disinfectant wipes. :)  So now the reality is setting in that this surgery is actually happening. How is it that I can feel so relieved and so nervous both at the same time?  You seem to be handling it all just fine though.  I appreciate your smiles and giggles at moments when I need a reminder to just breathe.  It's like your telling me, "Mom, don't worry.  I got this!" 

I'm not gonna lie Payton.  The past week did tick by very slowly. But it is also a week I will always remember. I love being at home with my two children, entertaining you and playing with Pierce all day.  I admit I am "Lego'ed out!"  We played with Legos endlessly, read books, organized toy bins, went for walks, did mountains of laundry, and just tried to make the most of our "quarantine" time. By the end of the week, your brother was about to go bonkers and needed a change of scenery.  Thank goodness for dad....he swept in and saved the day by taking Pierce fly fishing for part of a day over the weekend.  Look what a great time he had! He's getting to be quite the little angler. :)

So now we've nearly reached the big day. We are all packed and ready to leave in the morning for Denver.  Grandma Holly is coming to pick up Pierce in the morning so he can stay with her...and he's thrilled about it.  We'll drop Sammy and Winnie off at the dog kennel on our way out of town and then creep through Denver traffic again to head to the hospital for your pre-op appointments.  You have a CT scan at 1 pm, bloodwork at 2 (I'm dreading this!), a full physical exam at 3, and finally we will meet with your neurosurgeon and plastic surgeon at 4 pm to go over the surgery and ask/answer any last questions before Thursday morning.  I have a feeling we'll be pretty wiped out after trying to keep you happy and comfortable through all of that.  So from there, we can just check into the hotel, grab some food, and settle in for an early bedtime.  I am setting my alarm for 3 am Thursday morning because that's the last time I can feed you before the surgery.  We check back in to the hospital at 5:30 am Thursday and they expect to begin your surgery at 7:30 am.  It's hard to imagine having to hand you over to them...can't think about that yet.

Payton, you may or may not care about the "details" of your surgery someday, so if you don't care, skip over this part. I, for one, tend to need MORE info because I'm such a processor, so I'm just going to include it. Your surgery is called a cranial vault reconstruction (CVR) with a fronto-orbital advancement (FOA.)  Basically, they will open the fused suture on the right side of your skull.  Then they will take out and reconstruct the two frontal plates of your skull, bringing one side more forward and the other side back before placing them back in securely with plates that your skull will eventually absorb.  The FOA part of surgery is to help get your eye sockets better aligned (and prevent major eyesight problems) and your brow areas more symmetrical.  This photo below is the best example I have found in explaining your condition and what the surgery is going to do to correct it.  It is a CT scan posted by a fellow cranio mom I connected with through a Facebook group.  The only difference between this photo of her son and your condition is that your right side is fused, not your left. 

Surgery is typically 4-6 hours (could be more, could be less) and we will get to see you very soon after they've finished.  Once you are stable, they'll transfer you into your own private room where your dad and I both get to be with you during your entire stay.  We feel as prepared as we can be, yet we have no idea what to expect at times either.  We do know, though, that you are in very good hands and we keep hearing amazing things about Children's Hospital Aurora (Denver) and how great your care is going to be. We are feeling very thankful for this at a time when nerves are so present!

Payton, at the risk of sounding overdramatic, I'd like to share some of my thoughts with you on our last night at home before your surgery.  During your bath tonight, I gave special attention to your head, scrubbing it and pouring water on it over and over as you smiled and wiggled around in the baby tub.  You've always loved baths, but tonight was extra special for me because it is the last time I will bathe your head as it is now, the shape you were born with, the shape I'm used to seeing. It is not that I don't WANT this change for you. I WANT you to have a more normal appearance in the long run. I DON'T want you to ever have eyesight or other issues that we could have prevented.  It's just that I have fallen so deeply in love with your perfectly misshapen head.  This beautiful, soft head that I love kissing and stroking each night as I nurse you to sleep will soon have a zigzag scar ear to ear across the top of it.  I know this surgery is the right thing.  So why is it that I will also mourn the loss of your perfectly misshapen head that you have right now?  Weird right?  Of course, what you will gain makes it all worth it.  And what you will hopefully avoid, such as eye or jaw problems later on, makes it worth it too.

So promise me this...after this is all done and you are healing, promise that you'll still trust in us even if you don't understand what you've just been through.  Know that we'll take care of you, comfort you, and do everything we can to make your life happy and meaningful.  Promise me you'll remain the same loving, sweet baby, even without your "perfectly misshapen head."  We know you'll need time to heal and we will understand if you are fussier or more needy than usual for a while.  We'll be patient.  This is one of the most difficult things we've been though already, but I know that through it and through God's grace, we are becoming even stronger as a family.  Thank you Lord for giving us the faith to face this with confidence that all will be good.

And to all our family and friends who are thinking of us, praying for us, and sending much love and support, we will see you on the other side of the surgery!