Sunday, April 14, 2013

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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