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 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
 


6 comments:

  1. I'm so glad to hear that you got a package from Cranio Care Bears! Summer was so amazingly nice and supportive when we were going through Selah's cranio journey. We struggled with feeling like people wouldn't understand why we'd consider putting her through a "cosmetic" surgery, but if she hadn't been healed through prayer we absolutely would have done the surgery. We had already learned from our experiences with Faith that no one can truly understand the decisions you have to make unless they've been through something similar, and because they can't understand the difficulty of the decisions, we just decided their opinion didn't count! ;) We are looking forward to seeing you guys at church!

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  2. Joy, you received so many gifts, and offers because everyone you whose life you and Derek touch, knows that you two would do anything for anyone. It is a reflection of how amazing you two are as friends and family members. Thanks for being my friend!! and thanks for sharing this experience with us all. You ARE an amazing family that will make it through anything!! Give Payton a kiss for us!! Love, Mia

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  3. Derek, Joy and Family, I am so thankful that Payton's surgery went well, and she is home and healing. My thoughts and prayers have been with you all through this very difficult process. The blog is awesome, and Payton will really appreciate it when she is older and able to understand it all. Thank you for keeping us all up to date. Please have a family hug and know that it is from me. Love you all! Praying that the healing continues. Rita Huck

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  4. My son is having the same surgery on December 10th at Children's in DC. I can't thank you enough for writing this blog. I've read it several times now and each time I feel better about his surgery and recovery. Thank you for spending the time to do this and relieving so much of my anxiety and questions I had about this entire process. If you have the time I would love to talk to you and see how your daughter is doing now. My email is ericadetwiler@gmail.com. Thanks so much and happy Thanksgiving!

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  6. I just wanted to say Hi! my daughter had surgery almost a year after yours did. I was searching for other cranio blogs and came across yours. Thanks for sharing your story!
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