Saturday, May 23, 2015

Happy Two-Year "Cranioversary!"

***If this is your first time visiting the blog, you can find the first entry in the March 2013 Blog Archive called "The Beginning...the News." ***

Payton- Can you believe it! Today marks the two-year anniversary of your reconstructive skull surgery for right-coronal craniosynostosis.  When I look at how far you've come and all the milestones since that day two years ago, I can't help but appreciate your precious smile and bubbly personality even more!  Today, as I wrestle with memories of the extreme emotions I felt during your surgery, my heart is also going out to all the families currently facing their own challenges, cranio families included.  I send them hopes for strength, courage, and the faith that they will overcome those challenges faced, and that they have an army of people in their corner for support, just like we did two years ago.

You have certainly grown and developed a lot since the last time I posted a blog entry, on your first birthday almost a year and a half ago! Just last month, you received your first ever haircut!  It was extra special because a fellow "cranio" mom, whose son had surgery two weeks after you did, cut your hair at her salon. (If anyone in the northern Colorado area reading this also had a child with cranio surgery, she offers free haircuts to cranio kids--a very sweet way to give back and support other families of cranio kids! Contact me for her contact info if you'd like! Her generosity also inspired us to donate the cost of the haircut instead to Cranio Care Bears in honor of our kids.  Cranio Care Bears is the non-profit organization that sent us a care package two years ago for Payton's hospital stay.  They have a wish list of items on Amazon that can be purchased and sent directly to them to help build care packages for families currently facing surgery for their children!)

Here are a few other highlights from your post-surgery days and since the last blog post:

Learning to walk! (February-March 2014, 13-14 months old.)
Getting ready for 3D photos at a check-up at Children's.

Return visits to Children's Hospital every 6-12 months to follow up with your doctors.  Each time has been reassuring that you are progressing great and it's fun to see your development.
One year post surgery 3D photos show the change in skull shape (Left: pre-surgery, Right-1 year later)

Riding through the hospital with big brother.  Your one year visit was much more fun for you!

One year post-surgery

Celebrating Payton's one year "Cranioversary" with Grandma and family- May 2014

Summer Fun 2014

A happy flower girl for Aunt Laura and Uncle Brandon's wedding- June 2014

One and a half yrs post-surgery.


    First family 5K- Christmas 2014

 A special 2nd birthday celebration! January 11, 2015

 Spring 2015- Two years post surgery. 
A visit to the farm.

Your favorite thing to do while hiking-Spring 2015

So next steps? We just plan to keep celebrating the milestones you reach Payton.  We also plan to face future challenges with the same courage, confidence, and peace we tried to maintain during your journey with craniosynostosis.  We hope to support others through challenging times whenever we can so they know the support we ourselves felt two years ago and since.  We plan to appreciate the time we are given together and make the most of it!  (This sounds mushy and yes, there are days we lose sight of this in the hectic-ness of life.  We are a "real" family after all.  But I also know there will be timely reminders to be thankful when we need them, like today's chance to just reflect on the past two years.) Happy two-year Cranioversary and thanks for continuing to inspire us with your resilience and love.

Mom, Dad, and Big Brother Pierce

Sunday, January 12, 2014

A Year to Remember

***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.***

Happy FIRST Birthday Payton!!!!!
12 months old! January 2014

Lots of birthday cake, family, smiles, and feelings of thankfulness surrounded us tonight as we celebrated.  This has certainly been a year to remember in our lives.  It has been exactly a year since the day you were born. It has also been almost 7 1/2 months since your skull surgery for right coronal craniosynostosis. And you know what?  Even with the challenges we have overcome this past year, I would still live it all over again.  Why? Because I'd get to also experience the joys you have brought to our family.  And especially because of the lessons learned during this year that have helped reshape our perspectives about what matters in life.  And of course, I'd relive it all over again just to have you, a beautiful, gentle, careful, happy one year old in our lives today. You are SO worth it!

I wanted to update your blog at some point and your first birthday seemed like a great milestone for our friends and family to see just how far you've come since birth, and especially since your skull surgery last May. I was surprised this fall that your blog has even reached other families around the country who have children facing the same surgery.  A few have even contacted us for more information or support. One mom, whose son had surgery in December, contacted me after seeing the blog and asked for recent photos of you too.  After sending some to her, she was feeling even better about her son’s own future and upcoming surgery.  I’m proud that your experience has had a positive impact on other children or families, reassuring them that they will get through it!  And what changes you have gone through in the past 8 months! So here’s a recap:

Since your surgery on May 23, 2013, at 4 1/2 months old, you have been thriving!  By 6 months old, we returned again to Children's for a follow up with your doctors.  They were impressed with how well you had recovered from surgery and you were out of "recovery" mode and back into "development" mode...mastering the rolling over skill and trying hard to get the "sitting up" one next.  They (and we) were also very happy with the outcome of your surgery and your changing head shape.  Look at the 3D arial photo of your skull before surgery (on the left) and then 6 weeks after (right.)  What a difference!
Left photo: Arial view of Payton's skull day before surgery.  You can see the tip of her nose at the bottom. Right photo: 6 weeks post surgery.

1 month post surgery

6 months old-6 weeks post surgery

Payton, by 7 months, you were sitting up on your own very well.  Your hair was starting to really grow in nicely and many people couldn't notice your scar anymore. It never bothered us when they did, but now it was fading away, hidden under your growing hair.  At 7 months, you also started full day daycare, adjusting well and taking a bottle (which I was scared you weren't going to do! Within a day of daycare, you proved me wrong though, and I was okay with that!)
7 months and sitting up!

At your 9 month welcare doctor visit, in October, your doctor was shocked at how much your face and head shape had changed, specifically the shape of your brows and forehead.  She saw you after your surgery but commented that just three months later, the improvements were even more significant!  She’s not the only one who has said something like that over the last few months too!  Even now, 7 months after surgery, it seems like you are still "growing" into your new skull shape nicely.  Your doctors in Denver who performed the surgery said to expect some continued improvements between surgery and 18-24 months old, and we have been excited for you as we see your more natural facial shape appear each month.  Although still slightly noticeable to someone who sees you often, it would be very difficult for most people to notice that you were born with a fused skull and deformed head shape!  Your skull looks amazingly symmetrical compared to before!  Those doctors knew what they were doing!
Pre and post surgery shots- 3 months and 7 months old.

Left: Pre-surgery (Photo is a mirror image so right eye looks bigger, but left eye does in this photo.) Right: 12 months old
Around 10 months old, you were officially crawling and then quickly starting to pull yourself to standing when you had something to hang on to.  You are such a happy baby that the only thing that can tamper your great mood is the occasional cold, flu, or incoming tooth.

Now Payton, at a year old, you are cruising around everywhere, walking when you have something to grab on to, or crawling quicker than we can catch you! As I mentioned earlier, you are somewhat careful.  This is new for us...we are used to your fearless brother who was trying to jump off of the stairs or run into swimming pools at your age, and who had four black eyes and a knocked out tooth before he turned three! So walking completely on your own is not a priority for you yet, but I think you will be quickly approaching that milestone in the next few months too.  It is exciting to see you reach different developmental milestones at your own pace and we are not worried anymore about your cranio journey significantly impacting your future development.  All babies reach milestones at different times and you are right on track, your own track. 
Holidays 2013

Payton, do you know what this past year has really taught us though?  Over the past few months, Derek and I have both realized that your journey with craniosynostosis changed our outlook about what really matters in life…and that the small stuff, although stressful at times, is really just small stuff.  I would still have considered us positive people prior to this year, but here are my "Top Ten of 2013" that your journey helped remind me about or reinforce:

1) Love for a child is fierce and unconditional.  It changes your heart forever.
2) Through trials or challenges come new perspectives. I wouldn't wish this tough journey on anyone, but I'm grateful it has helped me appreciate more about my life and focus less on the day to day stresses.
3) Laughter and a positive attitude will help you endure so much.
4) A strong marriage is the cornerstone of a strong family...I knew this already but was glad to be reminded of it this year.
5) A support system of family and friends can reach beyond what you even times of happiness and in times of need.  Be appreciative of those in your life and be there for them too.
6) Family needs come before earning that "extra buck" (if at all possible.)  At the same time, there are times where you make sacrifices or do what you do for the sake of your family.  We really had to follow our hearts this year when it came to making decisions about what's best for our family in the present and in the future.
7) The peace of mind of having an emergency savings fund when you need it is worth more than anything else you could spend your money on.  There have been times in our lives where we didn't have a single dollar in a savings account, but this experience reminded us about why it is important, when possible, to try to have a savings set aside that you don't touch unless it is for a family emergency or medical need.
8) Take care of yourself even when you are caring for others! You only get one body so treat it well but enjoy things you love occasionally (like, or chocolate for me) because you only live once...OMG I just said "YOLO!" My sixth graders would be so shocked! ;)
9) Truth and grace can co-exist.  It is important to speak truth to others, even if it is sometimes hard to hear. However, it is also important to show grace to others and hope for those two things from those around you.  Payton's doctors (all of them) had a good balance of truth- being realistic and honest with us- and grace...understanding when we asked a million questions more than once or were more challenging than their actual patient!  Derek and I also had to show a lot of truth and grace to each other, and it helped us immensely knowing we could count on each other for that balance of "tough love" and "understanding."  
And the final one I hope to carry with me into this new year and exciting second year of your life…….
10) Be PRESENT in the moment and look for things to appreciate rather than looking for things to worry about!

So far so good! Thanks for all you have helped teach our family during this first amazing year of your life! We love you forever!

Thursday, May 30, 2013

One Week Post-Surgery and Finally Smooth Sailing!

***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.***

WELCOME HOME PAYTON!!!!!!!!!!!!!!!!

Payton at 6 days post-op and feeling good! 
What a difference a week can make.  Payton, it is hard to believe that a week ago right now, last Thursday, May 23rd, we were trying to comfort our very uncomfortable and fragile looking baby after just having come out of anesthesia and a 4 1/2 hour surgery on your skull. That first day was one of the longest and hardest days of our lives, which I already shared about in the last blog entry.  The next day, you seemed to be starting your recovery amazingly well.  Doctors even commented by Friday night that they were surprised you did not have more swelling yet.  Well, it just showed up late. 
Saturday morning, two days after surgery, you woke up and could barely see out of your eyes.  That day, you were physically healing well. Even your swelling was considered part of the normal progression of the healing process.  However, you seemed to regress in many other ways.  We don’t know exactly what caused such a change in comfort or temperament from Friday to Saturday, but you were NOT HAPPY.  It may have been just a perfect storm of a few different issues. The first happened early Saturday morning when the nurse was ready to give you pain medicine through your IV and realized that fluid from the IV was starting to infiltrate, or back up, into your foot and leg.  She knew this because your calf was hard as a rock and very puffy, much more than the other leg.  She capped your IV right away, not pulling it out completely, but disconnecting it to the IV line.  So you could have been uncomfortable because of your leg.  Also, since you didn't have a working IV line (your other one was already lost too because you like to kick so much, so this was already your backup IV) they had to give you oral pain meds instead, a narcotic called oxycodone.  You’d had no narcotics Friday and now were back on them.  We thought you acted much more agitated, had less head control, and seemed like you were hurting more. You were just "out of it." It was definitely affecting you for the worse and that was so hard for us to see, a very helpless feeling.  To top it all off, your eyes were so swollen that you had to strain to open them enough to see.  That would make anybody mad!  Who knows the real reason, or reasons, for your change for the worse Saturday, but with all three of these things, we could not blame you at all for your bad mood.  So we just did our best to comfort you. 
Payton two days post-op,
finally no more monitors round
the clock.

We did have some family visitors Saturday in the hospital, which helped your dad and I keep some sanity.  Even though you were too fussy to appreciate some friendly faces, we got to see your Grandma and Papa Decker, your brother Pierce, and your Grandma Holly. They were so happy to see you and Grandma Gaye held you for a few hours while you slept off the pain meds.  It was wonderful to see your brother Pierce and he loved seeing you, almost as much as he loved seeing the Lego display at the Children’s Hospital too! :)
Grandma Gaye giving Payton some cuddle time in the hospital.

The doctors did many different rounds to check on you during our hospital stay. One lighthearted moment Derek and I had was joking afterwards about an afternoon when your neurosurgeon paid a visit to you.  He brought a huge entourage of attendings and other doctors to see you.  It was like a scene out of Grey’s Anatomy where Dr. Sheppard is observing a patient and quizzing the wall of doctors behind him with lots of medical sounding questions while they take notes and nod their heads a lot. (The only difference between our real life moment and the show is that your doctor doesn’t quite look like Mr. McDreamy, but he sure is amazing at what he does so we cut him some slack cause hey, NO ONE looks like McDreamy in real life!)

By Sunday morning, it was clear you were on the mend and we were so happy to be headed home!
Leaving the hospital on Sunday, May 26th after
surgery May 23rd.
We arrived home mid-afternoon to some fresh salad and fruit courtesy of Grandma and Papa Decker.  It was so nice for us to have some REAL food, although I have to admit, it was also a welcome treat to have Starbucks and take out on a daily basis in the hospital and not feel guilty about it whatsoever!  But that can’t last forever. :)  The first few days home with you were a blur because of some sleepless nights (which we were told to expect.) We just did a lot of holding you and coaxing you to take medicine every three hours (which was a fight, usually ending in us feeling terrible and you screaming and sputtering, sometimes even spitting the medicine right back up.) Through all of it though, we were so happy to just be home with a baby on the mend after a successful surgery.  We knew this was just a moment in time and that sooner than later, normal life in the Decker household would resume once again.

Fast forward to today, a full week since surgery. Payton, it is incredible how much you have healed!  We returned to Children’s Hospital today for your one week post-op visit and you have a clean bill of health!  They gave us the o.k. to wean you off of the pain meds completely and just monitor you for changes in behavior.  Already you are acting more like yourself every day.  Unfortunately, you are more clingy than normal, wanting only mom or dad and being a little shy with others. We don’t blame you and we know that will get some point! Also, we hope your sleep will continue to improve.  The night we brought you home, Derek and I got up with you at 9, 11, 1, 2:30, 4, and up for the day at 5 am!!!  Thank goodness that has improved and now I’m back to getting up with you two to three times per night…which was what you were doing before surgery.  The incision is still very noticeable, but it looks good, healing nicely. Pierce actually thinks it look kind of “cool.”  Your swelling, which was pretty severe by day 3 after surgery, gradually went back down this week and now it is almost completely gone.  In its place is a beautiful face with little features that we can’t stop staring at.  Payton, we have always loved your wonderful little face.  Now, after surgery, it’s like we notice your natural facial features so much more because your bone structure has been changed to reflect what you WOULD have looked like had you been born without your skull fused.  Both sides of your forehead and eyebrows are more symmetrical.  Before they were lopsided…which would have gotten more severe with time.  Your eyes look so remarkably similar too.  One eye used to be more open than the other, and even though I can still tell which side was fused, it is so much more symmetrical!

Payton BEFORE surgery- notice left
of picture show that eye more open
because that side of skull was fused.
Payton AFTER surgery- eyebrows and eyes
are better aligned and make them look
more symmetrical.
Payton's forehead BEFORE surgery,
right side is flatter and left protrudes over eyebrow.
Payton's forehead AFTER surgery, both
sides more symmetrical.
 These pictures don't even show the extent of the differences we see.  You almost have to see the changes in person to truly appreciate it. But it has made us appreciate that what you went through will impact your quality of life for the better in the long run because those irregularities would have become even more drastic over time. Which brings me to a bit of a touchy subject for me during the last few months….


When we talk about how you looked before surgery Payton, you need to know something.  We LOVED the way you looked before because all of your facial expressions were so endearing and lovable. We did not elect to do this surgery for you simply because we want you to look prettier someday.  In fact, it really bugs me that your surgery can be called “cosmetic,” as if implying that we just wanted you to have a cuter nose, or a prettier face like most “cosmetic” surgeries are associated with.  This was not cosmetic.  This was reconstructive and preventative, meaning something needed to be fixed because it was abnormally growing, and causing a deformed look that would continue to worsen over time.  Without this surgery, I hate to think about what you might have had to endure throughout your school years or adult life, things like bullying, teasing or blatant stares from people wondering “What’s wrong with her head?”  Would you have resented us for NOT fixing it when you were young and we had the best window for success?  Would you have dealt with more emotional baggage in your life, lower self esteem, or possibly become an extreme introvert because you felt embarrassed about how you looked?  

Thankfully, we will never have to know the answer to these questions. And let’s face it, we all believe that looks are NOT the most important aspect of life, which your dad and I will preach to you and Pierce for the rest of your lives…but I challenge any parent to put themselves in our shoes and have to decide to either put your child through surgery…or let your child have a very noticeable deformity of the face and head later in life-that you could have prevented.  As the neurosurgeon said when we first met with him months ago, "This may be considered an elective procedure, but I don't know any parents who don't "elect" to do it." How could we not and risk making your life even more challenging than it had to be? Not to mention potential eyesight and jaw problems associated with coronal craniosynostosis.  It is already challenging enough for ALL young girls in our society, battling self-image worries in a culture that puts so much value on looks.  We will still teach you to embrace all your beauties and imperfections and be proud of all of them…because that’s what makes you YOU.  This surgery doesn’t change that.  It just helps you avoid an even tougher road than you would already have just living in our society today.  And I believe any parent who has a child with a deformity would have the same two goals as we do:  to improve the look of that deformity if medically possible, and to instill self-confidence and empathy in your child as they deal with challenges.  We hope this surgery, even though you won’t remember it, will make you a more supportive, empathetic, and compassionate person with others throughout your life, especially with those who face difficult challenges in their own lives, whether physical or otherwise. 

The other lesson this whole experience reinforced for our family is how much a kind gesture and giving heart can mean to a family that’s dealing with something difficult, whatever the degree, and we intend to pay it forward now.  We received a few different care packages, whether it was from my brother and his fiance’s family for our hospital trip, my amazing book club girlfriends for food and gas in Denver, or from my college roommates Katy and Lindsay for things that would help when we brought you home- including a pretty cool Ninja Turtle coloring book for Pierce that he was over the  moon about!  We also had a wonderful non-profit organization called Cranio Care Bears ( send us a care package including hospital items, socks, a baby blanket, teethers and sleepers for Payton, and other useful items to make our hospital stay more comfortable.  Cranio Care Bears sends these packages all over the country on a weekly basis for families of children facing surgery for craniosynostosis.  We will definitely be donating to this organization in honor of you Payton. 

 Besides the care packages, we received meals, house cleaning services, cards, offers for grocery shopping or watching Pierce, and so many prayers and well wishes.  Sometimes it feels odd to be offered so much help.  But when you actually need it, it is so appreciated and besides being helpful, these acts of kindness are so humbling.  Like I said, now it is our turn to continue to seek ways to pay it forward for others.
Payton 1 week post-op, May 30th

So what’s on the horizon for you Payton?  The sky is the limit!  I can’t wait to see your life unfold in the coming years!  I will appreciate and be thankful for your health as well as our family’s health every day that we are healthy.  I will embrace tough situations in the future with a positive outlook and a “ready to face it” attitude.  You have shown us through your strength at such a young age that we can become as strong as we need to be when the situation calls for it.  You’ve shown us that a simple smile or hug can be all the reassurance someone needs sometimes.  You’ve shown us that as a family, we can face anything and we’ll always be there for each other.  Now we are ready to put this behind us, but never forget what we’ve learned from it.  And we will do our best to be grateful everyday….for everything we have to be grateful for.  We love you Payton, always.

The Decker's- Pierce's preschool graduation
May 29th, 2013

Friday, May 24, 2013

The Other Side!!

Good morning Payton! Your smile today was the biggest gift and sigh of relief we could have ever asked for after our experiences during the past 48 hours.  Right now you are peacefully napping, still being monitored closely and hooked up to lots of different things.  But we are so relieved at this point to see such progress in your recovery compared to yesterday post-surgery.  I'm going to back up though and fill you in on your past two days.

Wednesday, May 22nd (day before surgery) could not have gone more smoothly.  After hugs and kisses goodbye from Pierce, we drove to Denver with plenty of time to spare, leaving us some time to grab a quick lunch, check into the hotel, and be at Children's Hospital for the start of your pre-op appointments at 1 pm.  You did so amazingly great for your CT scan!  You were very quiet, slightly "concerned" looking, but not crying or scared at all as they got you bundled tightly.  Once you were snug enough that they felt confident you wouldn't wiggle around too much, they put you in and out to the machine while dad and I got to stay in the room.  All looked great, until the radiologist realized your little outfit had metal snaps near your head that is.  She was bummed because they had to completely un-bundle you, take you out of your clothes, and start the bundling process all over again, by which point you were getting upset.  So "take two" was more of a struggle but you did it and it was all over fairly fast. On to the next appointment.

Getting ready for CT scan

Headed into CT scan

Bloodwork was pretty much what we expected, not fun!  You cried.  We held your hand, sang to you, and gave you your pacifier dipped in sugar water (a first for you.)  Unfortunately, they couldn't get all the blood they needed from your vein the first time, so they had to heel prick you and collect more blood from there to get the rest.  Thank goodness you are so even gave the nurse a smile before we left (and once you'd settled down.)

After your bloodwork, we met the doctors briefly and then had a short physical exam for you with a nurse practitioner.  Your health checked out perfect, which was what we expected but still a relief.  The nurse shared your blood work results and showed us the CT scan, which CLEARLY showed the fused part of your skull on the right side (left side of picture below.)  Wow.  It was a good reminder of why this surgery needs to happen.  One eye socket already looked bigger than the other, right brow further back, and you could even see why your nose is starting to barely tilt to the left side.  It is amazing to know that surgery corrects ALL of this!
Payton's CT scan, May 22nd.
 Right coronal suture is fused.
(You can see where it should be open if you look closely.)

 The nurse practitioner was really helpful in explaining the entire procedure again.  She answered many questions...all while bouncing you on her knee and getting you to fall asleep in her lap.  I think she's been around babies before. :)  With the past two weeks at home breeding a build up of nerves, Derek and I felt much calmer and ready for what to expect the next morning when we arrived for your surgery.  It was nice to have this "trial" run the day before as well as get all your pre-op stuff out of the way and confirm that nothing (healthwise) was going to delay your surgery.  The hospital visit ended that day with them taking some pretty amazing 3D photos of your head.  They will do this over the next few years and be able to see and take very specific measurements of your head shape and growth.  It is exciting to think how you will grow over the next few years!  I'm not rushing it though, I still love this baby stage so much.

Payton, after a full day, you were pretty fussy by this point, so we grabbed some Subway and just went back to the hotel for an early bedtime.  You got some sleep that night (very broken up, so we eventually just put you in bed between us to cuddle.)  Your dad and I didn't sleep for more than two hours total.  I think we had too much on our I was worried about sleeping through my alarm to wake you and feed you for your last feeding at 3 am.  Once I was up with you at 3, it just was too hard to fall back asleep and we were up at 4:30 for the day since you had a 5:30 check in time.  

Going to bed the night before surgery. Payton still gave us lots
of smiles after a long day of pre-op appointments.

Now on to surgery day.  I don't know if words can accurately describe how it feels to be waiting for your child to undergo a major surgery.  Too many other moms and dads have had to experience it at some point, and I now understand why they might describe it as "indescribable." It felt surreal.  The saving grace in all of that was how smoothly the morning went and how kind everyone was.  For two hours, we were in a holding room while nurses and doctors came in and out, checked your vitals, talked to us, had us sign consent forms, etc.   Thank goodness you are at a stage now where you can be easily distracted because you were hungry by the time they took you to surgery. 

All dressed in hospital gown and set to go for surgery.

Payton, one thing in my life I pray I NEVER have to experience ever again is how gut-wrenching it was to hand you over and say good-bye as they took you away. Now I can't even imagine how parents feel when their child's surgery has an unknown outcome.  Your doctors were very confident in a great outcome for you (and they were right.)  Even knowing that, it killed us to hand you over. Tears are falling down my face right now just remembering that heartache yesterday. I'm so glad its behind us.  I cried so hard I had to sit down and collect myself before we could even go back to the waiting area.  Even then, it took me a good hour before I could talk to anyone without balling. I knew it was going to be difficult, but WOW.  I'm so grateful for your dad Payton.  Derek loves us so much and is such a rock.  He was shaken too, yet he's also so composed and supportive.  We just needed to hug eachother for a while and we felt grateful to be able to comfort eachother. 

The waiting went much faster than I actually expected.  We walked a bit, talked to your grandparents on the phone, read magazines, and just tried to stay occupied.  An OR nurse called out to update us every hour and continuously shared that things were going as expected.  Finally, 4 1/2 hours after your surgery began, the doctors came out and smiled and shared that everything went great!  Another couple in the surgery waiting area smiled at Derek afterwards and told him they could visibly see his shoulders relax.  We were relieved and very anxious (and nervous) to see you.  We still waited over an hour before they felt your were stable enough for us to come back to you.

The first sight of you post-surgery took my breath away.  I don't think I'm going to post any pictures at this point.  Maybe once you are more recovered, your swelling has improved, and your incision is better healed- we'll see.  But I'll show you someday if you want to see them Payton.  When we walked around the corner, I knew it was you when I saw this tiny little body in a hospital crib with things sticking to you everywhere, IV's coming out of both ankles, oxygen mask on, a sore-looking incision across your head, and-even though we were warned about it-a large drain coming out of your head and running across your forehead under your skin.  Even though it was hard to see you like this, Derek and I were both still just relieved to be by your side again.  And we haven't left your side since.  We sat with you for a few more hours in the recovery area because the doctors and nurses weren't happy enough with your breathing to send you to your own room quite yet.  You were also very sleepy and once woke for brief periods, at which point you wimpered and made sad faces like, "What's going on?"  SO hard to see but nurses said a big part of that is just because of how it feels coming off of anestesia. You DID like for your hand to be held and we just talked to you and squeezed you hands constantly. 

It was a great relief when they finally transferred us to your own room by about 4 pm, which is where we are all now staying together until you can come home (at the earliest Sunday they said...don't know yet.) That whole afternoon and evening, they kept you on oxygen and monitored you a little closer because of some mild respiratory issues. But today, you are already off oxygen and doing well breathing completely on your own.  As I'm writing this, I'm thinking (and hoping I don't jinx us) that we may be past the most difficult part of this experience, the first 24 hours.  You are a completely different baby today than you were last night, a happier, more restful, calm baby.  Last night, you just seemed so uncomfortable and out of sorts.  Derek and I had a mini-meltdown by that night because you were having to be poked and prodded so much every single hour.  Right when you'd finally settle down, someone was there to take your blood pressure, prick your heel to draw a blood sample, take your temp, etc.  We totally understand WHY they were doing this, but it was just so frustrating to see you disoriented and unhappy.  Thank God we are past that for now.  Today has been a whole new day. 

Speaking of "whole new day," Derek and I realized early this morning that because we were so concerned first and foremost with how you were FEELING yesterday, we never really gave much thought to how you LOOKED.  I got to hold you and nurse you early this morning (which was so wonderful, even with cords and monitors everywhere.)  You fell asleep in my arms and Derek and I just looked at your face and head closely.  Even through the swelling and with the drain still in (which they plan to take out by tomorrow), we can tell you have much more symmetrical brows!  Your forehead looks amazing.  I think we were both stunned and thrilled.  Funny how the whole point of surgery (reshaping your skull) was actually an afterthought for us at first.  But once you started feeling better, we could also focus on the outcome of surgery and get excited for you about how much this will be a good thing for you for the REST of your life.  I can't wait to see your results as you heal more in the coming weeks (and even next two years-the "final" look won't be known until you are still a little older and your bones have grown more.)

So now (I can't believe you are STILL asleep as I'm typing this long post), we just rest, take care of you, and help you through the next 24-48 hrs of swelling and pain management.  By Saturday, your swelling should be on it's way back down.  Nurses are going to teach us today or tomorrow how to wash your hair and clean your incision.  You won't wear any bandages or helmets at all and they say we are going to be amazed at how fast you are bouncing back in the coming days.  You may still LOOK hurt for a while, with your noticeable incision and some swelling/bruising, but you'll FEEL really good as long as we stay ahead of any pain.  I for one, can't wait to see you feeling so great again! 

We have recieved SO many texts, emails, and prayers from friends and family the past few days and are very thankful for the support system and love.  One amazing display of support yesterday was a picture sent to us from Derek's coworkers right after donating blood at a blood bank, which we had no idea they were doing.  The picture was titled "We did it for Payton!" Now, after my own child has had a blood transfusion, it makes you think more about who generously donated their own blood so that our baby could stay healthy and safe during surgery.   It doesn't feel like just a "thanks" is enough to express how much we have appreciated and drawn strength from everyone's support and words of encouragement.  Now, Payton, let's hope for continued progress over the next few days so we can bring you home soon!  Maybe by Sunday or Monday.....stay strong little girl!