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 better...at 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 (www.craniocarebears.org) 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

 

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 forgiving....you 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 minds...plus 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!

See You On the Other Side...

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

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

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

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

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

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

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

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

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

Ahhh!!! Germs Everywhere!!

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

Payton, I have NEVER been so scared of germs in my WHOLE LIFE!  I now sympathize more with those poor germophobes who are so worried about germs or getting sick that they don't even leave their house. Every door knob or light switch I grab is now the newest potential threat to your health.  My hands are cracked from being washed so many times in the past week. Not to mention I have overnight turned into the Germ Nazi around our household, constantly barking out orders to go "wash your hands before you touch anything!" 

So why this sudden mindshift to worrying about germs when I am typically the mom who drops the sandwich on the floor, wipes it off, and hands it back to my kid?  Because Payton, surgery is now getting very close....about a week away actually, on May 23.  You just got over a cold and ear infection at the end of last month.  If you have so much as a runny nose or tiny cough during the two weeks leading up to surgery, it will most likely be canceled and rescheduled for a later date. I understand the reasoning and would want the doctors to error on the side of caution, but I don't think I could handle waiting and worrying ANY longer without having a mental meltdown.  Not to mention, it would be a struggle to reschedule and re-work all the other logistics like hotel reservations, boarding dogs, and coordinating care for Pierce while we are staying at the hospital with you.  I'm not even going to go there....no need because Payton, you WILL stay healthy.

It doesn't help my newfound germophobia that your brother Pierce has had a nasty cold all week.  I'm so fearful of you getting sick too that I'm practically chasing after him with disinfectant wipes and bathing him in clorox bleach.  Ok, not the clorox part, but is has crossed my mind. :) All kidding aside though, it really is stressful.  Poor kid is sick and all I want to do is cuddle him and comfort him, yet I have to be careful that I don't transfer HIS germs to you.  If there is ever a time to be extra cautious, it is definitely now.  But I really do hope he understands, or will not hold it against me someday....



Pierce is 5! May 6, 2013

Not feeling well two days
after his birthday celebration, poor guy! 

Staying busy has been helpful in the weeks leading up to surgery, especially the great distractions like Pierce's fun 5th birthday party, soccer games, family outings, good friends in town overnight, and playdates with friends.  However, I'm afraid that "cabin fever" is going to set in because now we are having to cut back on most "outings."  We have pulled your brother out of preschool until surgery is over because there are so many kiddos sick with colds and even stomach bugs.  A kid with THAT much energy needs some outlets, so I think we will be playing a lot in the backyard, taking bike rides, and doing whatever we can to pass the time and have fun at home together.  But, boy, it can be exhausting when you feel like you can't go anywhere!

Payton, you are going to have to help me keep him entertained ok?  Right now, he gets a BIG kick out of making you smile and coo and laugh at him (I laugh at him a lot too!)  But he is amazed that as a 4 month old now, you smile back in excitement when he talks to you.  It still surprises him that he can get such a reaction out of you since he's used to seeing you mostly lay around, sleep, or give him a "newborn" stare like you did during your first few months of life.  It makes Pierce so proud and so happy that you now smile back.  And I can't tell you how much my heart melts just watching this.  I never knew how much I could love two children, and how much I could LOVE that you two will have each other forever.  I realize you two will tease and fight with each other like all siblings do.  But I also know he's going to be your friend, teach you many things, stare down every potential boyfriend you ever have and be a protective big brother who looks out for you always.  Even now he is somewhat possesive in a happy and cute kind of way.  He even introduces you to his friends by saying, "This is my baby!"  I'm pretty sure you are MY baby, but I don't correct him....you are ALL of ours. :)

Here are a few quick updates about your health Payton.  Physical therapy for your neck (torticollis) is going very well.  We work a lot with you at home and the physical therapist really noticed a difference this past week, so thankfully it is paying off.  You still favor turning your head right but you don't cry or fight it as much when you have to look left.  You still like to tilt your head, especially when tired, but it is getting better, which is what we want to see, progress!  So we'll just keep doing what we're doing.  Also, the eye doctor appointment went well.  So far, no eyesight issues caused from your craniosynostosis condition but he wants to keep close tabs on you during your first year of life so we don't miss "the window" of opportunity to correct it if you begin to develop problems.   But like I said, so far so good!!!

You are starting to roll to your side now, not yet all the way from your back to your tummy, but twice you've found a way to roll tummy to back and we jumped up and down with excitement!  (Funny the things you get excited about when you are a parent...someday you will understand this!) Now I'm starting to find you in all kinds of funny positions in your crib after sleeping...not on your tummy but head and feet all over the place...you are scooting around everywhere.  Speaking of sleep, you are a champ at this now.  Still not sleeping through the night (I get up twice a night to feed you), but you nap great and sleep in your own crib without any fuss.  This makes us SO happy after three months of holding you nonstop while you slept....we still love to hold you, but now we are all sleeping better at night.  Last but not least, after your 4 month check-up on Tuesday, May 14th, you have some new "stats":

Length- 26.8 inches -Ninety-ninth percentile for your age!  Big surprise...you are going to be tall, just like your dad, mom, and brother :)
Weight- 15 pounds exactly -Between the fiftieth and seventy-fifth percentile.

You are a happy growing girl!!! 

Payton, 4 months old, May 12th, 2013

So now, before I close the computer for the day, I'm going to get a little more serious and honest.
Let's face it....craniosynostosis SUCKS. There. I said it out loud.  Friends ask "How are you doing?" I usually say good, or ok.  And most of the time I do mean it.  But truthfully, it also depends on the day.  It's just that I can't ALLOW myself to think about what's ahead every minute of the day or it is too hard on me.  So when I don't think about it, or when I concentrate on things like what I've written above, I AM doing ok.  But with the surgery getting so close, the nerves are starting to creep in more often and they leave me with a very unsettled, restless feeling that is hard to keep buried unless I stay busy.  I swear I am actually very positive about everything most days, but I can't help it that at times, I'm so frustrated and scared about what our family is about to go through. As we are nearing the one week away "mark," my stomach is constantly in knots. And it is getting harder to just ignore it or "set it aside."  We are all a little edgy and fragile.  Sometimes very strong, sometimes ready to cry at the drop of a hat.  Payton, you had an ear infection a few weeks ago and after holding you and trying to comfort you for just the three hours of inconsolable crying you had from pain, I was pretty shaken.  Thankfully it was only a few hours before you felt better again and the tylenol and antibiotics started to kick in.  But it shook me because if an ear infection was hard, how am I going to deal with your discomfort pre and post-surgery after they've drawn blood, done CT scans, put you under, put in and taken out breathing tubes, opened up and reconstructed your skull, put it back together with plates, given you a blood transfusion, and kept an IV in you and a drain in your head over the next few days as you fight discomfort, swelling and soreness? How am I going to do this when it killed me and broke my heart for you when you were hurting because of a little ear infection?!

I'm not sure how I'm going to handle it all, so all I can do right now is pray.  Pray for strength, courage, confidence, and peace through this next few weeks. And I can lean on my wonderful husband who is also scared but so strong.  And he and I can lean on our family and friends who are giving us strength through their thoughts and prayers too.  WE CAN DO THIS.

Hurry Up and Wait

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


Happy 3 months to you Payton! Everyday you bring us joy. 

April 14, 2013- Three Months Old

Who doesn't love a great family photo opportunity!  Well, a holiday like Easter is the perfect chance to take a family photo.  After all, no one's got baby spit-up on their shoulder (yet), we are all wearing real clothes instead of sweats (which is my typical attire more days in the past three months than I'd like to admit), and it's a beautiful sunny day!  Well, this is the best one we could get...and to be honest, I might frame it.  It perfectly portrays our family these days, a happy goofy 4 year old who doesn't want to stay still for a photo, a beautiful infant who's mood might change in a split second, and mom and dad just smiling and rolling with the punches!  So...Happy Easter from the Decker's!

Patience has been our mantra lately.  It seems like everyone in our household is having to practice lots of patience in some form or another!  Pierce is so excited for his birthday on May 6th that he's constantly asking, "Mom, how many more days til May 6?"  And Payton, at three months old, we are practicing patience with you as you learn and adjust to sleeping in your crib. :)  A lot of rocking, pacifiers, consoling, and working on bedtime routines.  Of course, we understand why you're not thrilled with this new change.  Who WOULD want to sleep in a big dark room confined to a crib when you can be held instead right?!  But slowly and surely, you are adjusting to it really well and more sleep for all of us is on the horizon, I just know it! So Payton, you're probably wondering why can't we just keep holding you while you sleep forever? Well, in addition to better sleep for ALL of us, your doctor recommended that establishing better sleep habits BEFORE your surgery next month will make it a little easier on you when we bring you home afterwards.  Hopefully, you'll be able to bounce back faster with eating and sleeping if you were already used to some good sleep habits.  So far so good though!

I guess all of these opportunities for "patience practicing" are pretty minor though compared to the patience we're trying to have for waiting for your surgery on May 23rd.  After such a whirlwind last month of emotions, doctors appointments, scheduling, insurance Q & A's, and just wrapping our brains around what craniosynostosis is, now it sometimes feels like we just have to hurry up and wait some more. It is very challenging not to dwell on what's ahead, or to just wish it were here so that it will be over sooner.  However, Payton, we also don't want to wish away the next month and a half of seeing your smiles, coos, laughs, and other special moments and milestones as you grow, as well as your brother's hilarious Saturday morning soccer games, cute bedtime questions about life, birthday parties, and all the other special moments right now.  So as anxious as we are about getting past the surgery, we are also trying everyday to just be in the moment and appreciate all that we've been blessed with, which is truly a lot! 

Payton at 11 weeks old- March 29th, 2013

April 11th, 2013- 3 months old

Speaking of blessed, we were reminded this week of just how blessed we are to be surrounded by amazing people, something we've always known and felt, but appreciated being reminded again.  Derek and I were surprised by our co-workers, who felt like they wanted to do something to help us take something off our minds and plates during this time of stress.  So they got together and gave us a gift card for a house cleaning service and some pre-made meals to use when we bring you home from Children's hospital.  Payton, we can bring you home to a clean house and a couple healthy meals that WE don't have to cook, yay!  That may not seem like a big deal in the whole scheme of things, but it MEANT SO MUCH TO US, just the fact that people did something like that for us.  It was not expected and took us so much by surprise that I caught myself getting very emotional about it.  Who cries over a house cleaning gift card???  Well, I DO!  And Derek's reaction?  He pretty much broke into a smile and cold sweat.  Derek's words as he was joking about being so taken aback and overwhelmed with appreciation,  "Go figure. My wife cries, and I sweat!"  But it's because we are so grateful. :)  Payton, we have such a wonderful support system from many facets of friends and family in our lives (this is just ONE example) and we know there are a lot of people thinking about you and praying for you right now.  The cards, communications, and words of encouragement from different friends and family this past month have meant so much to us.  I think of those at 3 am feedings when my mind is racing and I can't help but feel alone and that I am the only one up right then in the middle of the night worrying.  I know we are NOT alone.

So next steps for you prior to surgery in May Payton?  Besides working on good sleep habits and tranisitioning you to your own room, you will be starting physical therapy next week.  We don't know what exactly that will look like, but your doctor said you are developing "torticollis" in your neck, quite possibly related to the craniosynostosis, and more specifically, your eye sockets not being aligned very well.  So basically, you are tilting your head down and to the left constantly, possibly to help you see better.  This is affecting your neck muscles, causing one side to tighten much more than the other and it limits your head mobility.  Bummer!!!  Plus you hate "tummy time" (even though we do it anyway) so you are not quite lifting your head or gaining head and neck strength as much as they'd like you to be at this point.  But physical therapy will help this and your torticollis a lot.  It will not correct your torticollis completely until after your surgery, but we agreed with the doctor that we'd rather get a jump start on it now than have it continue to worsen while we wait for your surgery.  And even afterwards, it won't be better overnight, and we'll continue with the physical therapy for a few more months, but we'll just have to be PATIENT won't we.  :) 

You will also see a pediatric eye doctor next Friday who will have a better idea about whether the craniosynostosis and related misalignment of the eye sockets really are the reasons for the head tilt, or if it is unrelated.  The opthamologist is also going to check your eyes for how well you see right now, whether or not they're crossing, or if there's any struggle to focus both eyes on an object.  He will also make sure you don't have any intracranial pressure inside your skull, something the neurosurgeon said you should NOT have, but they always check to make sure when someone's skull has partially fused too early while the brain is still growing so rapidly.  (Apparently, the eye doctor can tell if there's pressure or not just by looking in your eyes with a special instrument that shows them the back of your eyes...modern medicine amazes us!)

So that's a bit of what's on the horizon for us in the next few weeks.  Through all this Payton, we feel that EVERYDAY with you and Pierce is such a blessing and a gift.  Of course, we're not perfect and some days are hard, and sometimes we need an attitude adjustment again when we starting thinking, "Why do WE have to deal with all this!" But overall, we're rolling with the punches, looking at the good in all this, and trying to live by these words,  "Patience is not the ability to wait, but the ability to keep a good attitude while waiting."-Joyce Meyer

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The Beginning-The News

Hi sweet baby girl Payton!  I am starting this blog and writing it for you so that someday you will read this and and see what you were able to overcome during your first special year of life.  I'm also going to use it as a way to update your friends and family during this crazy and emotional next few months.  You have many people that love you and care about you.  They can leave comments here on the blog for you or us, and I will eventually print them and put them in your baby book...someday you'll read and see just how many people have been in your corner since day one!  As I write this, you are sleeping happily curled up in my arms, your favorite place during these first ten weeks of your life.  How are you ten weeks old already!

Your journey with "craniosynostosis" started the day you were born, although we didn't know it until a few months later.  Because of the position you were in when you were born, you had a pretty good sized bump on that forehead of yours!  You were still the most beautiful thing in the world, big bump and all.  Doctors said it was fine and that the bump would go away over the next few weeks so we didn't think anything else of it.  We were too excited to love on you to be worried about some little bump.  Look at how proud your big brother Pierce was to have a sister like you!

 

 Throughout your first two months of life, you met many special friends and family members.  You ate and slept constantly (although you sure didn't let your mom and dad sleep much in those early weeks!)  You also loved, and still love to be held, which we don't mind.  Plus, my biceps are going to look great by summertime. ;)  What we did notice however, was that your "bump" was not going away.  In fact, it seemed like it was maybe even getting bigger. We decided to bring it up to your doctor at your next appointment on March 11th.  In the meantime, you managed to still look so cute posing for pictures, bump and all..... check out your first Valentine's Day photo at one month old. We are all in love!

 
The day of your 2 month appointment came, just about two weeks ago, and your daddy and I took you to see your doctor for your check-up. 

We were going to explain to her that the bump on your head had not gotten better. In fact, it has seemed to get progressively worse. We also noticed the other side of your forehead (and eyebrow) has started looking even flatter, or more recessed. We were ready to bring all this up, but we didn't even have to...she noticed it right away and was concerned. In my head I was thinking, here we go, I bet she needs a helmet, darn! But I'm pretty sure my jaw dropped when Dr. Brockway said it could be more and that you needed to see a neurosurgeon at Children's hospital as well as get an MRI/Cat scan. She vaguely refered to a possible problem with your skull fusing prematurely but wouldn't provide too much because she wanted the "experts" to weigh in.

 

So at that point your dad and I are freaking out.  We don't have a ton of info, and want answers, so what do I do?? Google it. :) Someday Payton, you'll know what that means....or maybe something will have replaced Google by then, who knows!  Anyway, it was a dumb idea cause there's so much out there that can be scary to read about.  But I came across some info and photos of babies on some reputable medical websites and my heart sank...I thought, "Those babies could be Payton! Same head shape, one eye more open than the other, nose barely tilted to one side." In my gut, I knew I'd found what was wrong. I guess though, knowing ahead of time (at least partially) helped me process it more and be more ready for what we were going to hear at Children's.

On Monday, March 18th, we braved terrible stop and go traffic (your dad HATES Denver traffic and says he will never get used to it...he's such a country boy!) We arrived at Children's Hospital in Denver and met with your pediatric neurosurgeon and plastic surgeon (two of the BEST in the country that specialize in this and other similar things) and they confirmed it. "Payton has a birth defect called craniosynostosis"...no specific cause of this defect, just a 1 in 10,000 random thing for your specific type. The doctors continued, "There are a few different kinds of cranio, Payton's is "coronal", also called "anterior plagiocephaly" sometimes.  Basically, one part of her skull fused together too soon and is not expanding with the rest her skull, thus the head shape."  

 

Arial view of Payton's skull. 
The right side toward the front is where the
skull fused prematurely at one suture, causing a flattening look.

 

 Payton, I just held you tight and listened trying to hold it together. Your dad, tough guy that he is, was so strong listening to this but I could tell it was hard for him to hear.  The doctors reassured us that the fused suture or part of the skull is NOT causing you pain or pressure on your brain (so no developmental delay or brain damage THANK GOD!!!!) We were stressed about that possibility all last week.

So now for the bad news. The only way to fix this is surgery on your skull...otherwise it will continue to get worse over the next few years and make your head, forehead and brows look more abnormal.  Doctors also warned that your eyesight could be affected too because of the eye sockets not being aligned.  Payton, you will always look PERFECT no matter what in our eyes, but we don't ever want you to have to endure something difficult for your entire life if you don't have to. So we know that surgery is the right thing, even though it will be hard on all of us.

 

The good news is that this surgery has a very good outcome and by the time you are two or three, no one will know just by looking at you that you ever had any big surgery.  Even the scar will be covered by your pretty hair.  During surgery, the doctors will go in and open the suture or part of the skull that fused (so it can expand as your brain grows in the next few years.)  They will also reconstruct both sides of your forehead and eyebrows/orbits during surgery. You should only need ONE surgery and they want to do it while you are between 3-6 months old, so very soon.

Surgery day is scheduled for May 23rd, when you are four months old.  We'll get to stay down there with you for the four days that you'll be at Children's and then recovery at home should be fairly fast.  Doctors said it is amazing how fast babies bounce back although your sleep and eating patterns may be off for a few more weeks...hah! Your sleep patterns are not "on" anyway yet! :)

 

So how are we, your mom and dad, feeling about everything at this point? It is going to be very difficult to see you right after surgery if you are even the slightest bit uncomfortable, let alone in pain or not understanding what happened to you, but we will not leave your side. No parent wants their baby to go through anything tough. We've already experienced so many emotions...numbness, fear, stress, sadness, but eventually even relief and acceptance.  We feel better knowing you are in such good hands...literally people bring their babies to this hospital from ALL over the region for this. Your great doctors know what they are doing and will take great care of you!  It doesn't mean we won't still have our emotional ups and downs leading up to surgery day and beyond, but we are ready to face what's ahead and we know you and your family will be strong!  We have a great support system and people love and care about you!

 

We have faith that all will be good. And we love you unconditionally, forever.