"Hakuna Matata... what a wonderful phrase..."  And that was our theme song this week.  In case you don't speak Swahili (or you missed Timon and Pumbaa's wonderful rendition in 1994), it means "no worries."  As another cranio mom reflected in one of our prayer chain links - "Let go and let God."  I have no control over the fact that Grayson is back in the hospital.  I can't control how well his body responds to the medication, or even whether this will be the last time I have to write down which hands and feet were the last to have an IV so more can be put in.  I can only control how we deal with it, and let God do the rest.  I can make sure that Grayson smiles every single day.  I can coax a chuckle out of him after he's gone through a painful IV flush or I can hold him close and sing to him until he goes to sleep.  These are the things I can control.

A hospital is not a fun place for a baby.  It's not a fun place for anyone, really, unless you're me during the last phases of pregnancy (Hey, I got to lie in bed and watch movies, order grilled cheese sandwiches and chocolate pudding from the cafeteria and send Josh on late-night excursions to the maternity pantry for free rice krispy treats).  I digress.  The hospital is not a fun place for a baby.  They're bored, they learn that nurses = something bad is about to happen, and you can't explain things to them.  I'd love to be able to say things like, "This is temporary, we'll be home soon."  or "Don't worry, that blood pressure cuff is just going to give your arm a hug."  But I can't. 

Thankfully, hospitals have playrooms!  New and exciting toys to distract and occupy little minds.  Grayson LOVED the trucks they had in the playroom.  We even got to take some trains back to the room to play with later.  We also did a ton of reading.  I find myself reciting "Chugga Chugga Choo Choo" and "Barnyard Dance" in my sleep.

My mom, who has been an absolute miracle from Arizona for the last five weeks, also came to visit us all day.  Grandmas are magic.  They know all the tricks and can play peek-a-boo with the best of them.  My mom also gets the Cinderella award for helping me with playtime, feedings, laundry, chores, you name it.  She's an amazing woman.

Speaking of support.  I saw two angels from work yesterday.  They brought me coffee and breakfast from my favorite bakery, which was the best thing I had tasted in two days!  A third coworker called and offered to bring me food from my favorite cheeseburger joint.  A local cranio mom also brought us dinner and extra links for our prayer chain.  I haven't really cried throughout this process, but those acts of kindness were enough to get me pretty choked up.  We are so blessed to have such wonderful people take us into their lives.  I told Josh we need to pay it forward big time!  I see some volunteer work in our future :) 

Well, all those prayers must have really worked because after two days in the hospital, we got the all-clear to go home.  Josh and I were a bit nervous at first.  We called Seattle Children's and spoke with the cranio team to make sure they were okay with him going off the IV meds.  I don't mean to discount the hospital staff in Spokane whatsoever - we had the BEST care there, and truly we had the nicest nurses who went out of their way to make sure Grayson was comfortable and happy.  It's just that Grayson is kind of a collaborative masterpiece.  We want the surgeons who gave him his wonderful new head to be the ones calling the shots.  Since we've been home, we've had a bit of trouble getting G-man to keep his medicine down, but Josh has been hiding it in yogurt and distracting him with puppet shows.  We have a few follow-up appointments to make sure the infection is truly on the way out, but so far so good.

I'll never lie to Grayson.  If he wants to know how he got his scar, I'll tell him all about cranio.  If he wants to know why he has his scar, I'll tell him because God made him especially for us.  He wanted him to grow up strong, compassionate, and good.  He gave us all a test of our strength and our love for each other.  He knew we would be helped along in our journey by our loved ones and the kindness of strangers, and that we would all come out okay at the end.  Of course, I can't tell Grayson the story quite like that.  I think I'll need a brave knight named G the Gallant, who rides his noble steed (Toby) into battle against a fire-breathing cranio dragon.  But I'm sure he'll get the message.

Apparently, Grayson had an 11-month old birthday wish.  He wanted to go see the place that he was born, and he wanted to glow like his favorite toy, Glowy the seahorse.  So today we celebrated by going to the hospital and having a CT scan... well actually about 3 CT scans because despite the Versed, Grayson was wiggling around like the crazy person he is.  I'll back up...

Grayson woke up a few times last night.  By this morning, part of his incision was red, swollen, and leaking fluid and blood.  No bueno.  We called the cranio team at Seattle Children's and the on-call plastic surgeon said we should take him to the hospital.  So, at 6am I took him to the local ER.  They had absolutely no idea what metopic craniosynostosis was, and it took about 5 pokes to find his vein (which truly made me miss our friends on Whale 6 at SCH) but the staff was really nice and worked with the doctors in Seattle to come up with a plan.  Seattle Children's also called me several times to ask about Grayson and work out a solution, which made me feel totally at ease.  The local ER immediately put Grayson on antibiotics through his IV.  Seattle Children's preferred to evaluate him themselves, but because of the 300 mile journey, they said we should have a CT and some bloodwork done before they made the decision for him to come.  During the CT, I had to wait in the radiology waiting room.  It was my first time without him in 4 hours, and despite the crazy morning I had trying to entertain an 11 month old in a tiny room with the same 3 toys... I missed him.  I took advantage of the situation, however, and drank two cups of coffee in 5 minutes, along with whatever I could find crammed in my diaper bag.  Wow.  Burned my tongue but totally worth it.  Grayson, however, wasn't able to have any food until they determined whether he needed surgery or not.  I was finally able to give him a bottle at 1pm when the doctor came in and said, "No road trip!"  Grayson showed his appreciation by filling up his diaper.  Thanks buddy.  I have to say though, he went 7 hours without a bottle or a nap and he did remarkably well.  I am SO proud of him.  He really is an awesome kid.

So, Grayson will stay at the hospital for one or two nights while they give him antibiotics and watch his incision.  He already looks better to me, so I'm hoping we will get discharged tomorrow.  Neurosurgery at Seattle Children's wants to see him on Monday.  Here we go again!  Either we drive through the snowy mountain pass, or we fly for another $300-$350 a ticket.  But I have to say, he's worth it :)

Josh came to the hospital after work so I just came home to shower, get new supplies, and eat something other than a stale bag of cinnamon bagel chips (what's worse than day old plane snacks?  day old plane snacks in the hospital chased with 2 very awful cups of radiology waiting room coffee).

I'm taking Grayson's prayer chain from Cranio Care Bears back to the hospital to hang on his crib.  Lots of love to everyone who has supported us through this journey!  There's a better day around the corner, I can just feel it.

Grayson had surgery 18 days ago, and is looking better every day!  We get mixed reactions when we go out in public.  Some people do a double-take and angrily size me up to see if I look like the abusive type.  Some gasp and say, "Oh, what happened to you?"  And yet others are automatically supportive.  An older woman unexpectedly looked me right in the eyes, squeezed my hand and said softly, "It's all going to be alright."  I got a little teary as she walked away.  A tough biker looking guy at a restaurant said Grayson looked like a tough boxer, and he hoped his surgery went well.

Today, Grayson and I flew to Seattle to have his first post-op appointment with the neurosurgeon and craniofacial plastic surgeon.  What. a. day.  Grayson started the day out at 2:30am with a fever of almost 102.  Sheesh.  I woke him up again at 4:00am to head to the airport.  I'll let you guess how that went.  So, needless to say, I was "that person" on the plane to Seattle.  Flights with mad babies go something like this - People without kids try not to look totally annoyed, but deep inside are thinking "oh please don't sit next to me" and "where are my headphones, someone please tell me I packed the headphones" And I used to be one of them!  Shame on me.  People with kids, however, often give you sympathetic smiles, make goofy faces at your baby to cheer him up, and even offer to re-pack your diaper bag for you when you land.  Yes please to all of that.  Grayson was so tired after screaming (and I do mean screaming) the whole way to Seattle that he fell asleep in the Seattle Children's shuttle.  His snooze was short-lived, however, because we arrived at the hospital 15 minutes later when I woke him up again (*cringe*) and we checked in for our appointment.  Grayson screamed for another 30 minutes while we waited for the doctors.  He was so ridiculously upset, I was sure someone would walk in to see if we had been attacked by a T-Rex, but I guess a hysterical baby in a children's hospital really isn't anything but a soundtrack ;)

Grayson's appointment went well, and he's totally on track with his healing except he clearly had a fever again by this point.  And there was a spot on his incision that had been getting redder over the last couple of days.  By this afternoon, the redness had picked up like wildfire and spread to a large area around his incision and down around his ear.  It also became noticeably shiny, swollen and inflamed.  The surgeons thought it could be an infection (and it could explain the fever) which would not be a happy circumstance.  The appointment with the doctors was good timing in that respect.  The good news is, they prescribed him some Keflex.  The bad news is, they prescribed him some Keflex.  It's super powerful medicine, but has a tendency to make people queasy.  I'm pretty sure Grayson threw up whatever he ate for the last 3 days tonight.  It was totally gross, but also kind of impressive.  Somehow he even got it in his hair.  And ours.  Poor baby.  We'll try again tonight.

Grayson went to bed early but woke up two hours later.  After I rocked him back to sleep, I came out into the living room and noticed I had blood all over my shoulder. His stitches are bleeding.  Seriously?  What is going on?  We're keeping a very close eye on him.  What a Monday.  I suppose it wasn't all bad.  Grayson took a long cozy nap on our flight home this afternoon.  And someone helped me re-pack my diaper bag when the plane landed, after also giving me their aisle seat.  At that point, I couldn't help but think of my favorite line from Joe Versus The Volcano... "May you live to be 1000 years old sir."

Time for bed... I feel like it may be a long night.

Grayson has been home for one week now, and he's doing so great.  Our biggest complaint is that he's feeling so well, he doesn't know he's supposed to be taking it easy!  We're hovering over him like overprotective helicopters, following his every move as he gets used to the new size of his head.

His swelling has gone down a bit, and his bruising has gone up, but he's finally off the pain medicine today.  I think he was enjoying the extra tylenol for a couple of reasons - we think he's getting his incisors.  No front teeth in sight yet, but his CT scan confirmed that a few other teeth might be pretty imminent.

Today is also his last day of Bacitracin ointment.  Woo hoo!  Although my chin, neck, and face are truly very moisturized and soft from him snuggling his gooey little head into me every night, I think we are all excited to be done with that stuff.  Poor Grayson.  He looks like a baby bird in an oil spill.  I wish I could wash his head with Dawn so he could stop looking like Ponyboy from The Outsiders, but I hear that in a few days his hair will finally start rejecting the shampoo and he'll be back to normal.

Grayson is enjoying all the love, support, and of course presents that people have so generously and thoughtfully sent!  The first thing he does when he gets a new toy is to snuggle it.  The second thing he does is bite it.  Boys.  He went absolutely off the deep end when he got his new car this weekend from Grandma Kitty.  Such a happy kid.  And already breaking the law.  "Hello, Grandma?  I'm driving!  Can I have a banana?"

Home, and happy!

Today is Sunday, October 28 and G-man must have had a lot of prayers today because it is such a great day.  He's been so active - he tells me when he's awake by standing up in the crib and jumping up and down. The neurosurgery team came in at 9am and said his JP (drain tube) could finally come out!  That was not a pleasant experience for Grayson, but they said he shouldn't have really felt pain just discomfort.  We are SO happy to have that out!

The big news is that Grayson is going home early!  He was doing so well that they said they could discharge him today.  We were shocked but very happy.  It's hard for these kiddos to really get good sleep when they share rooms.  Inevitably, babies are babies, and they're not going to get cranky, have medicine, and the all-dreaded vitals at the same time.  So they're constantly waking each other up!  Seattle Children's is building a new wing, and one of the features is that kids will have their own rooms, which would be awesome for them.  Aside from that, though, Gray's experience at Seattle Children's has been so great.  Everyone took such good care of him.  It's a great hospital for parents too.  The cafeteria is so cheap, there are nice calm outdoor areas everywhere, there are 2 Starbucks stores, and also a big resource area for parents where you can do laundry, shower, get coffee, read, get on the computer, or even sign up for a massage (I didn't get to do this, but it sounds awesome).

Time to pack up and get on the road!

Grayson got to see another therapy volunteer!  A guy with a guitar came in to see us, just when G started having a rough day.  He played some really nice music, and we got to request Twinkle Twinkle Little Star which made Grayson happy.  Grayson kept reaching for the guitar, so the volunteer let him hold it while he played.  It was the Grayson remix :)  What a nice thing that this guy spends his Saturday afternoons helping kids have a better day.

Saturday night, Grayson got his last lead taken out.  No more wires!  I'll admit, it had been kind of fun to see his heart rate change depending on his activities.  I could tell when he was truly asleep or about to wake up.  And when he watched Baby Einstein on the iPad, he nearly flatlined.  It was hilarious.  It's his zen place.  We suspected as much.  He still has his JP in, but we safety pinned the bulb to his gown.  We finally got to take him down the hall for a walk, which he loved.  He traveled with his favorite music (Iz) on the phone.  I can also comfort him and put him back to sleep at night without being tethered to the wall!  We let him play on a blanket for awhile, and he seemed to be so happy finally being able to crawl around.

On Friday, around 24 hours post-op, Grayson really started to perk up.  He was able to sit up by himself, and he had his first moments of being awake without crying.  That was a really great milestone for everybody.  He got to watch some cartoons on the iPad to distract him from the not-so-fun stuff like medicine and diaper changes and evil blood pressure cuffs.  Grayson also started having some withdrawals from the morphine I think, because he couldn't stop rubbing his face.  Itchy itchy.  After that, he had a really good night.  In fact, if we didn't have to wake him up for vitals and meds, I think he would have slept almost all night.  He also didn't have to sleep with his IV in, since he was drinking his bottles so well.  I'm sure that helped.

Today is Saturday, October 27.  Grayson woke up a much happier kid today, and we even got our first smile and laugh.  Grayson stole the glasses off my face, which he thinks is sooo funny. We even got to hear the classic Grayson cackle... "ah-ah-ah-ah".  The plastics team and the neurosurgery team both think he looks great, and is doing awesome.  They were able to take out almost all his leads, and so he only has one lead left attached to his toe and of course the dreaded drain tube coming out of his head.  It was great timing, since he has decided he's done with laying down and he finds all these wires and tubes really fascinating.  Except the one in his head because I'm pretty sure that one hurts.

I think Grayson's head already looks so much better than it did yesterday.  They're keeping the drain tube in for now, because it seems to still be pulling quite a bit of fluid.  But once that's out, his forehead will look a lot more normal, even with its increased size.  He received a present today from his Aunt Meow (Kitty).  He snuggled right into his new dragon and we put the Eeyore balloon on his crib.  I think between the stuffed animals, prayer chain, pictures, and the quilt made by a Cranio Care Bears donor, we have the most cheerful colorful crib on the floor!

I'm so proud of my little man.  He's recovering so well, and trying so hard to be happy even when he's hurting.  He had a pretty tough morning after he received his meds late.  It took a really long time to get him back on track, but because he was having a hard time he got to see a therapy dog!  A volunteer brought in his 10-year old Golden Retriever named Pie (short for American Pie because he was born on the 4th of July).  Grayson stopped crying, stared at Pie, and started talking to him.  Which in Grayson language is (uhh.  Uh.  Uh.  Uh.)  I almost cried, it was so cute.  Grayson played with Pie's ears a little bit, and we were able to give him a bottle after they left.

I think that if his eyes have not swollen shut by tonight or tomorrow, that we may be out of the woods on that happening at all.  I don't want to jinx it, though.  Once they take his tube out, some of that fluid will accumulate and cause some swelling.  But right now, most of his swelling is on his right side.  Which kind of makes him look like a boxer.  Grayson Ali.  If he could wear clothes, I would have loved for him to wear his Cranio Care Bears shirt today that said "You should see the other guy".  It has a stick figure that looks just like Grayson on it.  Our little fighter ;)

So you can see the difference without focusing on how distorted his face is right now... here are two pictures of Grayson's head - one taken right before surgery and one right after.  On the left is Grayson's adorable pointy head.  On the right is Grayson 2.0 with his new Charlie Brown head.

Today is October 26.  At 7am this morning (about 12 hours after surgery), Grayson got to leave the ICU/PACU and come up to the general surgery floor.  He had his own room for awhile, but now he's sharing with another baby who looks to be about his age.  The other baby is just waking up from anesthesia at the same time that Grayson had just fallen asleep.  Well, I suppose they can have conversations with each other in baby language (otherwise known as "Wail") for the next couple of days.

The doctors say Grayson is doing really great, and being out of the ICU so fast is a good sign.  He's trying to be active already - when his morphine was running out last night, about midnight, he flipped himself to his tummy, crawled up the bed and over to me where he stood up for me to hold him.  Crazy baby.  We let him sleep on his tummy for the rest of the night, which he seemed to like despite the fact that his head wasn't elevated.  Today he's been cuddly and grumpy.  It could be that he's more alert since we've moved him from the morphine to oxycodone and tylenol.  He's also had about 8 ounces of formula today, which is great.  He wants to be held a lot.  I am having flashbacks to when he was a newborn, and he only had three stages - eating, crying, and sleeping.  Holding him is awesome, but also a logistical feat - not only does he have stitches from ear to ear, but he also has cords coming out of every limb (2 foot IVs, monitors on both hands) and also the drain coming out of his head.  That will probably come out tomorrow.  Well, who can blame him for being grumpy right?

I prepared myself for a whole different baby, and I'm glad I did, but Josh and I agree that he still looks like Grayson.  Well, a big, bumpy, lumpy-headed version of Grayson :)  If I had any doubts, they were gone the minute he started getting all feisty with us ("Oh that one trying to put me in a choke hold?  Yep, he's ours").  God Bless all those cranio moms who shared pictures with us of their babies post-op so we knew what to expect.  I'll share pictures too, but I'll probably wait a couple of days.  The drain tube under his forehead is kind making him look kind of like Frankenstein, and he still has a lot of blood around/in his mouth (great for Halloween... or nightmares).  His CT scan looks completely surreal - there's a lot of bone missing and rearranged, which explains all the swelling.  But to us, he's still perfect.

We got a page at about 7:00pm that Grayson was out of surgery.  The surgeons sat down with us to tell us that everything went really well, and to tell us what to expect next.  The craniofacial plastic surgeon said Grayson's face was really small!  The smallest he had ever seen.  So, he had to widen both the forehead and the orbital bones quite a bit.  There didn't appear to be any pressure on his brain, but it was really really tight right between his eyes sort of where the bridge of his nose is.  Grayson's brain should start filling up his new head pretty quickly.

We're in the recovery room now, because the ICU is full.  There isn't anyone else in here though, so it's kind of like having our own private gigantic room.  Grayson also has an ICU nurse here with him 24-7.  We got to see him for the first time around 8:30pm.  He looks pretty strange.  Not only is his head extremely wide, and swollen, but he has a drainage tube running across his forehead under the skin, and coming out below his left ear.  Even when he sleeps, one eye is open, while the other is mostly shut.  Hard to describe, but I'll just say he looks really strange, and you probably don't want to see a picture.  Not until some of these tubes come out anyway.  He still looks cute to me, though.  I can see the inside corners of his eyes for the first time!  He'll look a bit overcorrected for about a year, they say, but I can already tell that his new head is going to look awesome eventually.

He whimpers and cries out a lot, but they're keeping him pretty comfortable with morphine until he can take Tylenol.  I got to hold him for a bit too, which was really great.  He's back in his crib/bed now and hopefully he'll get some good sleep for a couple of hours.  I taped his prayer chain from Cranio Care Bears at the end of his crib, which is so cool.  Shelby from CCB came by to deliver the most wonderful awesome care package, and to provide some company and comfort while we waited this evening.  Thanks to all for the support and prayers today.

We were given this strange historical artifact to give us updates throughout the day....

I think I remember how to use one.  If not, I'm sure there are instructions in my DeLorean.   We already got one page to tell us that the surgery started at 2:30, and everything was going well.  I'm happy that we have a link to our little man.

And, here we are again!  Today is October 25.  We drove over last night from Spokane.  Spokane was only in the 30's when we left, so Seattle's balmy 55 degree temps felt pretty warm.  We saw some snow on the pass - a reminder that ski season is just about here....and that we need to put the chains in the car again.

We stayed at the Hyatt Place downtown, which is an awesome hotel not only because the rooms are huge and there's free (hot!) breakfast, but also because they have a shuttle that runs within a 1-mile radius of the hotel.  We took advantage of that, and took the shuttle down to Pier 57 to ride the "Great Wheel" - Seattle's new tourist attraction, a giant ferris wheel that sits on the edge of the pier and extends 40 feet over the water.
We all thought it was pretty cool.

We went to Red Robin for dinner next, where I took the liberty of ordering the biggest dessert they had after dinner - Mountain High Mudd Pie.  It's kind of like Paradise Pie for you Hawaii folks.  I'm pretty sure they just filled a mixing bowl with ice cream, put more ice cream and crust on top, flipped it over and cut it into fours.  Amazing.  Grayson really liked the car game at Red Robin - I wish we had one of those for our house!

G-man loved crawling all over the hotel room, using the rolling couch ottoman as a walker, and admiring his new "friend" in the full length mirror.  He slept surprisingly well for being in his pack n play, and I woke him up at 5:30am so he could eat before the cut-off time.  Since he wouldn't be eating for at least 6 hours after that, I fed him until he looked like Violet Beauregarde from Willy Wonka after she turns into a giant blueberry.  Only Grayson Beauregarde was filled with 8 ounces of Enfamil and a whole container of prunes/apples (you know, to give the surgery team a present....only it backfired and Josh and I got a present instead.  Thanks Grayson.)


For you cranio moms, I took one last picture of Grayson's head this morning.  You can see his trigonocephaly really well.  For those of you saying "trigono-what?", trig means that his head is triangular shaped because his forehead was unable to grow any wider from birth.  So as his brain grew it just grew toward the back and sides where the sutures were open and able to expand.  Despite the fact that I don't want Grayson's face to change AT ALL, and I love him just the way he is, pictures like this remind me that he does need this surgery, and we're doing the right thing.  Sometimes I forget that he has trig because he has so much hair!

We got to the hospital around 9am.  Grayson had pre-ops and labs scheduled in the morning and then surgery check-in at 11am.  He didn't cry when they drew his blood.  Didn't even flinch.  I was super impressed (both with my son, and with the person who drew his blood!)  I sure hope they don't need extra anesthesia to put down our tough little rhino... "we're gonna need a bigger boat".

For the second time, we checked in at the surgery center, and began the waiting process.  And... it turns out once again that they have an ICU bed problem.  But we weren't turned away.  He just won't be spending the night in the ICU after all, but in a recovery room, until a bed opens up.  So instead of being checked in at 11:00, they weren't able to take him back until 1:10pm until they got it all sorted out.  We got more cuddle time though, so I was okay with that.  He should be done sometime around 7:10 tonight (one hour to put him to sleep, another 5 for the surgery).  I can't say enough wonderful things about the Seattle Children's staff.  Everyone that interacted with us was so great with Grayson, and so thoughtful and considerate of us.  They even brought us lots of toys to play with while we waited in the room, although after 7 hours without food or water, only Baby Einstein on the iPad was going to cut it for G-man!  We changed him into his hospital gown, and they apparently only have big kid socks, but I put them on him anyway. They were like big red legwarmers :)

The last 10 months have been wonderful and amazing, but there have also been times (emotionally) that have not been easy.  But by far - the hardest thing we have ever had to do is to hand him over to the anesthesiologist today.  Grayson was just about to fall asleep.  We were standing and rocking, and he was listening to Iz on Josh's phone.  He was super cuddly, and resting his cheek on my cheek.  I had to give him up, and of course he starts bawling.  The nurse (awesome like the rest) told me (now in tears) that he would go to sleep really fast because he was breathing so deeply.  I thought that was nice.  Nothing painful happens while he's awake - no IV lines, no poking or prodding.  And once he's asleep, he won't feel a thing.  He won't miss us, and he won't be hungry or sad.  But we sure miss him already.

Our new surgery date is October 25.  After settling all the new details with the hospital and after a brief shopping trip to Target (diapers...formula...baby clothes) we were ready to take on Seattle.  Since my dad flew all the way out from Arizona, we thought it would be fun to spend the weekend together.  I'm so glad Grayson got some quality time with his Grandad.

We went to the zoo (which apparently Grayson found boring despite the awesome Grizzly Bear), toured Seattle's infamous underground city, and took a ferry to Bainbridge Island for a wonderful lunch at the water's edge.  Most importantly, we spent time together laughing and exploring as a family.  We didn't expect to have happy memories that weekend, and we soaked up every minute of it.

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.