So...today is not the day.  Apparently there is something happening in the general Seattle area that is filling up all the hospitals.  Wildfires?  Escaped zoo animals?  I have no idea.  We are speaking with the  scheduling staff later on today to determine whether it would be possible to stay in Seattle for the weekend and get him in next week, or whether we need to wait longer.  A very nice anesthesiologist with an Australian accent broke the news to us.  Which somehow made it a little nicer.  G-man is ready for battle in his Viking helmet, so we're all set to take on the aquarium today... or maybe go for a little boat ride.  But first - food and coffee.  Praying for the strength and patience to do this according to the schedule of the Big Man Upstairs.

Today is the day!  We can do this!  Eye of the Tiger!!!  At least I think today is the day.  Last night, as we were loading the car, I received a call from the surgery team.  It turns out, due to "community events" (I don't know what that means - it sounds like a street fair or a farmer's market, but surely that can't be right unless there was a catastrophic event at the farmer's market) that Seattle Children's Hospital is full.  Too full.  Like, bursting at the seams full.  If they don't have the right bed for Grayson available when he gets out of surgery (an ICU bed), they won't start the surgery.  They wanted to call to give me a heads up, that despite the fact we were about to drive 5 hours to Seattle, we might have to reschedule in the morning.  Rescheduling, they said, might be tricky since the surgery requires two very busy surgeons at the same time.  I said, okay, and thank you for letting me know.  Not their fault, and they were so apologetic anyway.  The good news is, that when we finally made it to Seattle at 12:45am (bless Josh for driving the entire way), the hotel upgraded us to a suite.  The hotel was recently renovated and much nicer than I was anticipating.  We all got a solid 3 hours of sleep, and I couldn't ask for anything more right now.  Time to wake up Grayson for a bath and some clear liquids (he isn't going to be too happy about the clear liquids part so it might be an interesting next couple of hours!)

Yesterday we flew to Seattle for a full day of pre-op appointments.  We met with the anesthesia team, neurology, the social worker, the nurse, the craniofacial plastic surgeon and the neurosurgeon.  Grayson was such a great kid.  He cried more when he was tired than he did when they drew his blood.  The team at Seattle Children's was awesome.  They laughed about how much energy our little man has (they said active babies actually heal faster), and they totally went with the flow when he was trying to eat every object in the room and yelling over them like he was at a Journey concert.  And when he totally started to melt down (after 8 hours with no nap), they turned the lights down and let us put him to sleep before continuing with the appointments in whispers.  At one point, when he was crying while we were waiting in the lobby, a volunteer with a ukelele strolled up and sang him a beautiful version of "Twinkle, Twinkle, Little Star" which G-man just loved.  God Bless that man.  He said he's there every Monday, and I do sincerely hope we see him again.

They told us that Grayson's surgery will take approximately 5-6 hours.  The neurosurgeon will remove his forehead bones down to the dura, and then the craniofacial surgeon will mold it and reshape it.  Both surgeons will remove the top of the orbital bones together.  The craniofacial surgeon fills in the new soft spots he creates with a thin layer of harvested bone from other parts of his skull.  New bone should eventually grow in during the next few years to completely fill in the holes (if not, he'll need another surgery when he's 3 or 4 years old but that's not likely).  The plates and screws they use will dissolve in about 9 months, but Grayson will always have thin wires by his eyes and above his nose which will eventually be enveloped by bone (the doctor assured me he won't be setting off any metal detectors).  He'll likely need a transfusion during surgery, and Josh and I can't supply enough blood and plasma for him so he'll use the blood bank.  The good news is, that despite what we've heard, his new head will be very strong.  He'll be cleared for "rough and tumble" play in no time, and as long as everything heals like it should, he can lead a very normal life and even play contact sports when he's older. 

The doctors relayed all the required complications to us - coma, catastrophic blood loss, death.  But in reality, one of the hardest things to hear was the realization that by Friday, my baby's appearance will be change dramatically.  The craniofacial surgeon told us that he will build out (overcorrect) Grayson's forehead about 10-15% larger than it should be, so that 1) he doesn't revert back right away, and 2) he has room to grow.  He told us to prepare for a baby with a very strong brow line for awhile, "like Arnold Schwarzeneger brows" (I'd prefer he said Robert Baker or something - the one from Gray's Anatomy - much easier to swallow). The social worker brought it up too, and warned us that there's actually a grieving process for the "old baby" for a couple days, and that it's completely normal.  We've already fallen in love with him as he is, and so I know this to be true.  I love Grayson's face. I could stare at his little head all day, and sometimes I try.  I rub his forehead as he goes to sleep, and so I know every inch of his face by touch.  I sometimes look at other "normal" kids and think they have enormous heads!  I don't want them to change his face.  I think he's perfect.  When I imagined that I only have 3 more days with this beautiful baby that I know, I cried and cried.  Now that I've prepared for this part of it all, I'm okay.  I know it's still my baby.  I know I'll see him smile, or look into those amazing brown/green/blue eyes and I'll fall in love all over again.  And it feels vain and wrong to be sad or disappointed, because my baby boy will always be beautiful no matter what. 

When Grayson was born, I had bonded with the idea of him in my belly, but had never seen his face.  It was a strange sensation to meet this stranger that I already loved immeasurably.  I knew he was mine and would go to the ends of the earth to protect him.  I know I will love G-man's new face too.  Even if he does look a little like Robert Baker for awhile.

Before you were conceived
I wanted you.
Before you were born
I loved you.
Before you were here an hour
I would give my life for you.
This is the miracle of life.

Grayson Joshua was born on December 13 on a very cold snowy day.  He was two weeks early, delivered by Cesarian Section.  Our little man was so very tiny!  5 pounds, 13 ounces.  Grayson was born with lots of dark black hair and light blue eyes.  He looked just like his Dad, and we fell head over heels in love with him.  To us, he was absolutely perfect.

Although Grayson was our first baby, we immediately noticed that his head shape was different than we expected.  When I was pregnant, everyone told me that since my baby was being born via C-Section, he would immediately have a round perfect head.  But when Grayson was born, he had a prominent ridge down the middle of his forehead, running from the soft spot on the top of his head to the bridge of his nose.  No one at the hospital mentioned anything about it, and so I didn't worry too much at first.  I thought maybe it was because of his positioning in my belly.  All of my ultrasounds from about 5 months on showed that Grayson's head was very cozy and snug behind my hip bone.  We would laugh when we came out of the doctor's office with nothing but a picture of his foot because he was hiding from us.  We asked some friends and family, who assured us that babies have strange heads when they're born and it should round out on its own.

Two weeks later, the ridge was still there.  Josh and I did the worst thing you can do in situations like this - we Googled.  Up came a virtual tidal wave of frightening diagnoses and confusing medical terms.  Was there really something seriously wrong with Grayson?  We scheduled an appointment with our pediatrician's office the next day.  The doctor examined his head, and assured us that since his soft spot was still open, he was probably fine.  He said we should just keep an eye on it, but it should work itself out.  We should have been relieved, but we weren't.  Something wasn't right, and we weren't ready to let it go.  Again, we consulted the internet.  This time, we were determined to be brave enough to get to the bottom of this.  And finally there was the answer we had been searching for - CRANIOSYNOSTOSIS.  We read and read and read. 

An infant's skull is made up of several bony plates, connected by fibrous sutures.  These plates allow the infant's skull to mold itself through the birth canal and also to expand with their growing brain during their first years of life.  Craniosynostosis is the premature fusion of one or more of these sutures, often resulting in an oddly shaped head.  Failure to treat craniosynostosis can result in pressure on the growing brain, and can lead to brain damage or developmental problems.  Treatment for craniosynostosis requires surgery.

Strengthened by the realization that we might have answers, we returned to the pediatrician's office when Grayson was 8 weeks old.  We saw a different doctor, and again raised our concerns.  The pediatrician scheduled an x-ray immediately, which came back as inconclusive.  A CT scan was performed the following week, and we had our diagnosis.  Grayson was born with Metopic Craniosynostosis, which is a premature fusion of the metopic suture - the one at the front of the skull that runs from his soft spot to his nose.  Although cranio affects roughly 1 in every 2000 infants, Metopic Cranio is relatively rare and the surgery requires both a pediatric neurosurgeon and a pediatric craniofacial (plastic) surgeon.  An incison will be made across the head from ear-to-ear, and the surgeons will reshape the skull, and widen the orbital bones.  Spokane does not have a pediatric craniofacial plastic surgeon, so we were referred 300 miles away to Seattle Children's Hospital. 

Seattle Children's Hospital was amazing.  We met our team of surgeons when Grayson was 4 months old, and he was such a trooper with all the bloodwork and the exams.  the surgeons explained that they wanted to wait until Grayson was at least 9 months old to perform the surgery.  He would need plates and screws to hold his new head together, and the surgeons said they've had the best results when they wait for the baby's skull to harden and thicken.  The craniofacial surgeon said, "that way, things stay where we put them".  I can't argue with that logic.  We made the best of the trip by turning it into a weekend family vacation.  Grayson loved the Seattle Aquarium, and we took him to see the fish fly at Pikes Place Market.  After that, there was little to do but wait, and try not to think about it everyday.  In any case, we were looking forward to spending the summer with our little man.

In the months that followed, Grayson has grown up to be such a happy, loving, and adventurous baby.  He started daycare and learned to be so much more social and independent.  From the time Grayson could move his arms and legs, he appeared to be incredibly frustrated by his inability to move where he wanted to go.  Finally, he began to roll, then crawl, then stand, and now he 'cruises'.  His teacher at daycare called him a "brave little man" and I thought, yep that's our Grayson.  He smiles often, and once he started to laugh I just wanted to freeze time and listen to it all day.  At his six month check-up, his doctor called him "mechanically fast" for his age.  We were so thankful that his cranio was not affecting his development whatsoever. 

Grayson has had a busy summer!  He went to meet his great-grandparents in Washington, D.C.  He traveled to Vancouver, Canada and came with us on all our hiking adventures.  He went to his first baseball game, and to the county fair.  We also spent a lot of time goofing off at the park.  He was in the famous 12K Bloomsday Race, and he even earned a coveted Flying Irish shirt by coming with us each week for our 350+ member running group!  It's been an amazing summer, and we could not have asked for anything more. 

Josh and I have taken many moments to stop and just watch.  We just stare at him, and then look at each other beaming with pride as if to say, "Good job.  He's awesome."  There's a time every night when Grayson falls asleep in my arms, and although I know I need to put him in his crib, I hold him just a bit longer to watch him sleep and feel him breathing in and out.  Just because I can.  We make him laugh as often as we can, and we almost physically hurt when he cries.  I know that babies need to cry sometimes.  But I also know he'll have tough times ahead and it's almost like I believe that I need to prepare for the tears ahead with more happiness now.  Sounds silly, but that's what goes through my head every time he's upset.

I can't say enough about the online support groups I've encountered with other "cranio moms".  When Grayson was diagnosed, I felt scared, angry, confused, and incredibly isolated.  Social networking groups, and advocacy groups like Cranio Care Bears, CAPPS, and CranioKids.org have made all the difference.  I will love these women until I die, and I haven't even met most them.