Kindergarten. Amazing.

A little over 5 years ago, I gave birth to a little boy who was perfectly and wonderfully made, even though it took me almost a year to realize it.  A little over 5 years ago I gave birth to a little boy we hoped and prayed would not only live a long life, but a "normal" life as well.  A little over 5 years ago, I gave birth to...myself...as the mother of a special needs baby.

And a little over 10 hours ago, I walked that little boy to his kindergarten classroom!

(I should mention that I walked Little Lou to her second grade classroom as well!)

Friends, I have to admit, for a good portion of the first couple years of his life, I didn't know if he'd ever do this:

And to be honest, I wasn't sure we'd ever see this:

But today, friends, I had the very distinct privilege of delivering my sweet Bug to his first day of school.  He was both excited and nervous.  He couldn't eat breakfast.  He wouldn't wear tennis shoes.  He did not speak to anyone for a full hour before school started.  He was so excited to go, but he really wanted to stay with mommy, too!

~~~~~~~~~

I'd be lying if I said it was easy today.  People, I've kept a pretty tight reign on that little guy.  It's scary in this world of unknown, this world of what if, this world of special kids.  Terrifying sometimes.  Paralyzingly so, sometimes.  It's also beautiful and refreshing and amazing sometimes.  Today?  Well, today was one of those "sometimes" days.  

Terrifying and beautiful.  

Scary and refreshing.  

Paralyzing and amazing.

I learned today (again) that my little boy isn't quite so little anymore.  He's not quite so "fragile" as I like to tell myself he is.  He isn't what I think he is, he isn't what I expect him to be.  He's so very very much more than that!  

I learned today that today I have to let go a little, lest I hold on forever.  Holding on forever sounds wonderful, until I really think about what that means.  I want my little boy(s and girl) to grow, to change, to thrive.  They won't do that, they can't do that, if I don't ever give them a little slack on the reigns!

~~~~~~~~~

I learned today that not only is that little boy stronger than I ever thought he'd be, but so his his mama!  Friends, I underestimate me sometimes.  A lot of times.  I don't give myself the credit I truly deserve.  I am SO much more than I allow myself to believe.  

You are too, you know.  You are infinitely more than you tell yourself.  You are worth more.  You are capable of more.  You are more!

You'll love the view

I sent a message to a friend this morning, and then thought perhaps she wasn’t the only one that needed it.  I hope she doesn’t mind me passing it along to a couple thousand other friends as well, because we’re all in the middle of something, and each of you could probably use a bit of encouragement for something.  I shared this with some other people recently, because they were upset that someone had said their fight was a "harder fight" than the one these people were going through:

                                         

You'll get through this. You will. The way I see it, whatever you are going through RIGHT NOW is the biggest battle you've ever dealt with…or anyone has. Your battle RIGHT NOW is huge. But in a little while, you'll be past this (at least for a bit) and it won't feel quite as huge...and your NEXT thing will be the biggest battle ever. We're still in the middle of the "battle" with Bugsy, but since we're kind of in a lull, I don't think about it much. But when Stinky broke his leg? That was the hardest thing I've dealt with as a mommy...because I was in it RIGHT THEN. When I look at them side by side, obviously the 6 surgeries Bugsy’s has had, particularly the three 12+ hour skull surgeries, are WAY bigger than a broken leg.  But in the thick of it?  THIS battle is the hardest.

I don't know if that's helpful. Maybe not. But I guess I just mostly want to say hang in there, because in a year...2 years...10 years...you'll likely look back and remember that this was the hardest thing you'd ever dealt with to that point...but you'll have come out a stronger, better, fiercer mama because of it, and you'll be at a point where you'll be able to see where God's hand was all along. Your perspective will have changed, and while you will probably never be "grateful" for this journey, you'll be able to see some beauty in what it's done in your life.

I'm praying for you. It's HARD to be "that mom." Super hard. There are so very many emotions EVERY minute of EVERY day. There are some things you just have to learn to accept, and that is terrifying. But you'll make it out. You'll get to the other side. And you'll love the view from there.

Are you throwing away money?

My husband is amazing, people...amazing.  We've been married (almost) 9 years...been through a billion different life-changing experiences, and he's still holding on strong.  There have been a few stressful situations, for sure, but nothing we haven't been able to handle!

One such stressful situation is happening right now.  As I type, in fact, he's sitting on the couch next to me doing some crazy bio-statistics-type homework.  Homework.  Ick.  I miss college some days, but homework is one thing I certainly don't miss, and I am reminded of that nearly every day as we sit side by side on the couch, me playing on the computer, him doing his biology.

My husband is in college (again), working on a Biology degree, with certification in Bio-Tech (or something like that...I like to just say it's a Bio-Tech degree, but I guess it technically isn't).  He started college a million years ago as a Bio/Pre-Med student (we both did).  After 2 years of that fun, he felt a call to ministry, packed his bags, moved across the country, and got a degree in youth ministry!  Several years later, we're back at it.  Biology.  It's...ummm...fun??...going through all this together.  Or maybe stressful.  Or fun.  Whatever.

Do you know how many college textbooks we've purchased over the years?  Let's see...I have a BA in English education, and he has a BS in youth ministry AND 3/4 of a degree in Biology.  I'd say we've spent roughly...WAY too much money on textbooks.  Many of those books we were able to sell back to our school bookstores for a teensy fraction of the cost we paid to purchase them (even if we purchased them used).  Many of those books are sitting in boxes (and boxes...and boxes) in our garage, taking up much needed space.

Wouldn't it be great if there were a place college students could go to rent their college textbooks instead of having to buy them every semester??

There IS a place like that!

At CampusBookRentals, textbooks can be rented for 40-90% off the retail price! Not only that, but there is free shipping both ways, so you're not paying that expense either!  CampusBookRental BUYS textbooks, too!  If you have some lying around, it might just be worth your while to see if they'll buy them from you!

You can see an example here of how the pricing compares between buying Campbell Biology: Concepts & Connections (7th Edition) on Amazon ($169.33) and renting the very same book from CampusBookRentals ($31.23 for a semester)!  If it's not a book you're SURE you want to keep, this is a great deal!

I know what you're thinking.  I did it too.  I wrote in my books.  I highlighted.  I USED my textbooks when I was in college!  (Don't tell my friends that, though.  It might ruin their image of me.)  I couldn't possibly have rented textbooks because they'd want them back the same way I received them!  Right?  WRONG!  With CampusBookRentals, it's okay to highlight!

It's risk-free to try it out.  You have 30 days to decide you don't need that book after all and send it back for a full refund!  This is an awesome deal, because seriously, how many times have you purchased a "required" book from the campus bookstore only to find out two weeks into class that you aren't really going to use that book anyway?  How many times have you gone to buyback with a brand new book, still in the plastic, and gotten $10 for it?  That's not going to be a problem with CampusBookRentals!  If you don't need them, simply send them back within the first 30 days!  Easy!

CampusBookRentals is a great place to get books without having to pay the costly bookstore fees!  Check it out!

As if the savings weren't enough, CampusBookRentals has partnered with Operation Smile, an organization that helps to pay for life-changing surgeries of children born with cleft lips and palates!  If you've been around a while, you know that craniofacial deformities are very near and dear to my heart.  This partnership with Operation Smile makes me...smile.  A portion of the rental fee for EVERY book rented through CampusBookRentals will be donated to Operation Smile until they've paid for at least 1,000 surgeries!  This is an amazing, life-altering gift for children in need!  Thank you, CampusBookRentals and Operation Smile!

As you gear up to start the fall semester (it's coming sooner than you want to think) or summer semester if you're not taking the summer off like my husband is, please consider renting your textbooks through CampusBookRentals this year!  It'll save you a ton of money, save a few trees, and help to give a child a new life!

This post has been compensated by CampusBookRentals.  I have not used the program and can not give my personal opinions.

Vitality

animation, ardor, audacity, bang, being,bloom, bounce, clout, continuity, drive, endurance, existence, exuberance, fervor, force, get-up-and-go, go, guts, intensity, life, liveliness, lustiness, pep, pizzazz, power, pulse, punch, robustness, snap, sparkle, spunk, stamina, starch, steam, strength, stuff, venturesomeness, verve, vigor, vim, vivaciousness, vivacity, zest, zing, zip

~~~~~~~~~~

Last year, my life-long friend (and fellow blogger at Faith of a Small Seed) challenged me to choose a word toward which I would strive for the next year.  I've never been "good" at New Year's Resolutions.  I think they're sort of silly.  This word idea, though, intrigued me.  After much MUCH thought and prayer, I settled on the word "vitality."  

I didn't know then what I do now.  Had I been able to look into the future, I'd have know that vitality was exactly EXACTLY what I needed to focus on in 2011.  I needed endurance.  I needed intensity.  I needed life.  I needed a little bit of punch here and there.  I couldn't have survived this year without vitality!  

If you've been around a while, you know more of my story than the newbies, but just in case you've forgotten, it's been a heck of a year over here!  

In January The Hubby started work on a second bachelor's degree.  That means he's working full time and going to school nearly full time.  He's super busy and we're both super tired!  This mama's needed a bit of pep to survive the long LONG days without any help!

In June Bugsy had a 13 hour skull surgery, the third in his 4 years of life (#6 overall on his surgery list).  If you've ever handed a child over for surgery, you can imagine the pain I felt for that entire 13 hours.  The plan was to take a rib graft from his own chest and use it to fill some gaps in his skull, but unfortunately (or fortunately?) he'd been under for too long by the time the surgeons got to that point in the surgery, and he now has three areas of titanium mesh holding together his million dollar noggin.  God is good, though, and Bugs is a NORMAL 4 year old boy!

In August I received a scary medical diagnosis that changed my life from here on out.  You'll be able to read more about that in February...you'll see.  There was a little bit of just "being" for a while, and then some power.  You see, I have learned that I have to take control of my health.  I'm doing that!

Late spring I decided I needed to regain some health, some bounce, some pizzazz, to my life!  I started on a journey toward wellness and can't believe how much better I'm feeling physically!  I've lost over 45 pounds, gone from a size 16 pants and XL shirt to a size 10 pants and M shirt!  I even have a few small shirts that fit just fine now!  I am eating well and exercising almost daily.  My body is so thankful!

The Hubby took 11 hours of classes this fall!  That mean mama and the kids operated as a single parent family Monday-Friday.  That was extremely stressful.  Kudos to all you parents who do it on a daily basis!  I can't imagine how difficult that must be!  We've decided that we're going to try not to do that again.  It was very difficult on all of us, and probably not great for my health.

I found Zumba!  My Zumba instructors ROCK!  

Although it's been a rough year around here, I've fought back.  I've survived, and I'd say I've shown a fair amount of vitality.  I wouldn't say I was awesome at it, but I gave it a good effort.  I have a long LONG way to go on the vitality front, but I've given myself a good start and am so ready to see where God will take my family in the next year!

~~~~~~~~~~~~

Do you make New Year's Resolutions?  Do you keep them or break them?  Are you like me, and think they're silly?  Are you just so ready to get on to next year you don't even care?

I'd LOVE to have you join me in choosing a word for next year!  Strive to embody that word.  Learn it.  Live it.  Tell me about it!

~~~~~

Happy New Year and God bless!

Life never goes as planned.

Sometimes, it's better (even when we don't realize it at the time).

I insisted I wouldn't be induced.  I was with Little Lou and hated it.  My doctor finally agreed to "let nature take its course."  Three weeks before Bugsy was due, he measured 7 pounds, 14 ounces, and the doctor once again tried to convince me to be induced.  I refused. But God had other plans.  Four days later, pre-eclampsia reared its ugly head, and induction was scheduled.  I went into the hospital Thursday evening, and slept all night.  Promptly at 10:30 Friday morning, induction medication started.

My first real contraction came at 12:30, and my doctor went to get her hair done. I was still just 2 cm dilated.  Little Lou's labor had been 12ish hours.  We had plenty of time.  I insisted I didn't want an epidural.  I had one with Little Lou and I hated it.  I still felt every contraction.  I still knew exactly what was going on.  It was hard to push, though, and I felt groggy afterwards.  I didn't want that again.  Until 1:30.  I NEEDED that epidural.  But God had other plans.  I called the nurse who checked me and said I was 7 cm dilated and she'd call for the epidural team.  It took them a LOOONG time (5 minutes) to get there.  As was customary, the nurse checked me again when the team arrived.  Then she sent them away.  I was 9 cm and it was too late!

Another million hours (5 minutes) passed, and I felt like I needed to push.  The nurse didn't believe me, but when she checked she said I was ready.  My doctor wasn't back yet, so another doctor would stand in.  They'd call my doctor and she'd hurry over, but this other doctor would be there just in case.  I should "try not to push" until my doctor arrived.  But God had other plans.  The Bug was ready.  NOW.  If you're a woman who has given birth, you may understand the impossibility.  I did not push.  It took every ounce of energy I had, but I did not.  Finally, after an eternity of not pushing, my doctor walked into the room.  In street clothes.  With her hair half done.  It was 1:45.  A nurse put a glove on her left hand.  She caught his bottom.  The nurse put a glove on her right hand.  She caught his head.  And I did not push.  And, believe me or not, it did not hurt.

It should have been impossible.  I shouldn't have been able to deliver Bugs.  I should have needed an emergency c-section.  It should have been the most painful of all my deliveries.  It was not.  It didn't hurt.  Among a myriad of other evidences, these were just further proof that God's hand was already on our Little Man even before he was born!

Little Lou meeting Bugsy (the glow worm) for the first time.

Bugsy's head wasn't the right shape.  I didn't way a word because I was sure it would be passed off as "molding" from birth.  He was jaundiced.  YELLOW.  He wasn't perfect.  I was disappointed.  I'll admit it now.  I wasn't prepared for MY baby to be "that" baby.  We'd always talked about adopting special needs babies.  We weren't expecting to give birth to one.

We spent our first 9 months as parents of 2 with little (or more often no) sleep.  The Bug spent his first 9 months crying. I spent his first 9 months angry with God for making MY baby that way.  It wasn't supposed to be mine.  WHY did He let MY baby be the one with problems?  I wasn't expecting MY baby to have 2 12-hour surgeries before he was a year old.  I wasn't expecting MY baby to start early intervention at 10 weeks and have therapy 3 times a week for 3 years.  It wasn't supposed to be MY baby.  I was expecting to be that mommy to someone else's baby.  But God had other plans.

She adored her little brother.  Even when he was crying.  She's always been his "protector."

When Bugsy was 9 months old, he had his second surgery.  He spent 12 hours away from us.  When we saw him in the recovery room, he was swollen.  He was angry.  He was not my baby.  We'd anticipated a 5 day stay in the hospital, as with the first surgery.  But God had other plans.  For the first time ever, Bugsy rolled over in the hospital!  His eyes never swelled shut, and less than 48 hours post-op we headed home.  We didn't take the same baby home with us that we'd taken to the hospital.  This one didn't cry all the time!  This one slept.  This one smiled easily and laughed a lot!  THIS was the baby I'd expected!

Maybe two weeks post op, surgery 2.

When we finally got to "meet" our sweet Bug, we fell head-over-heels in love with him.  That's right.  I don't know about anyone else, but it took my that full 9 (1/2) months to really fall in love with him.  I will always feel guilty about "missing" the first 9 months because I couldn't get past my own frustrations.  It took 2 surgeries.  It took divine and earthly intervention.  Before, I'd loved him out of obligation.  Now I loved him completely! 

The road has been long.  We're hundreds of doctor appointments, even more therapy sessions, 8 doctors, 6 surgeries, a million smiles, and 4 years into this thing called life.  It's not what we'd planned for.  It's not what we'd expected.  But it's SO much more!

The happy baby we brought home

Happy first birthday, Bugs!

We've met a lot of neat people along this journey.  This is Melissa.  Her son and Bugsy are "cyber-twins"...born on the same day, both with craniosynostosis.  We met Melissa while she was on a business trip near our home.  She's such a sweetie!

Another little friend we met through our journey.  This little guy had craniosynostosis, too.  His parents have become some of our close friends!  In fact, they kept Little Lou and Stinky when Bugsy had surgery last month!

Bugsy, I love you!  I love you completely.  Unconditionally.  Selfishly, probably.  You came crashing into this world on storm clouds, but there's a rainbow after the rain.  You've proven to be the ray of sunshine we weren't sure we'd ever get with you.  You're an amazing, smart, talented, goofy, sweet little boy.  You love dinosaurs and bugs and cars and LIFE.  You've taught me so much more than I would have ever expected.  You've taught me more about myself than I could have imagined.  You've been a miracle from day one, even when I couldn't see it.  You are wonderful.  You are LOVED!

 Just for fun

Happy happy happy 4th birthday, Little Man!  May your life continue to be filled with blessings and may you accomplish all your dreams! 

Bugsy, this morning.  He's wearing the shirt Melissa sent him (see the picture above from when we met her!)  and listening to Aunt Jennifer and cousin Monkey sing happy birthday.  Happy birthday, sweet boy!

Catching up

We've had a super busy week in our family!  As you know, Bugsy had surgery a week ago today.  A week ago!  Can you believe it?  The week has flown.  The Bug is doing GREAT!  The last two nights I've given him regular Tylenol at night and no pain meds at all during the day.  In fact, we came home Saturday afternoon and since then he's had a grand total of 3 doses of Tylenol with Codeine..two at night at my discretion, and one during the day when chicken strips were too hard to chew and were hurting his jaw!  I haven't taken pictures yet today but here is a little photo journey of our week for you:

Bugsy, ready for surgery!

Goofy Juice on Board

Just before he was wheeled away.  They tell us that he rolled into the OR, looked around, winked at the nurses, and said a flirtatious, "Heeeeelllllloooo, Girls!" into that little microphone.

And then we waited. For the longest 13 1/2 hours of our lives, we waited.  Those chairs aren't as comfy as they look! 

Our first glimpse of our post-op Little Man. 

In the PICU.  On the foot of his crib is his "prayer chain" from Cranio Care Bears, a group of cranio-mamas who send amazing care packages to little ones preparing for surgery.  The chain stayed on his bed the entire time he was in the hospital, and was returned to his bed as soon as we got home.

Mommy finally got to hold him Thursday afternoon!  He wouldn't let me put him down.  For three hours. 

Swelling peaked on Friday.  Poor baby.  :(

He missed Little Lou and asked to call her on Friday.

Look, Mommy! I can SEE!!  (He had to use his fingers to open his eyes at this point, but he was excited!)

We finally made it to the playroom Saturday morning.

We played Guess Who!  Daddy had to help the Bug, but he loved it!  (Yes, his eyes are open here.)

Cousins came for a visit and brought huge homemade cards!

He showed them how his "repeller" hat helps him to fly!

We came home Saturday, and the Bug's been GREAT!  He's had a grand total of THREE doses of Tylenol with Codeine.  We didn't even fill his Valium prescription.  And last night I didn't even give him regular Tylenol at bedtime, but he slept all night and woke up pain free!  (Don't tell any of that to the nurse that pushed pain meds while we were in the hospital, okay?)

We've celebrated our homecoming, the birth of our nation, and the birth of SIX year old Little Lou in the last week!  We've done a lot of laughing, a lot of sorting through things, and a lot of changing.  The Bug's head isn't the only thing that was "modified" this week.  There'll be more to come on that later!

Thanks for all your thoughts and prayers this last week and a half!  We've needed them!

Bugsy, July 8, 2011

Recovery

I'm sitting in here in a PICU room at Riley Hospital for Children with my brave little man.

The Bug is currently sleeping peacefully, but off and on he wakes up, takes a drink of water, calls for me over and over (even if I am standing by his side with my hand on his chest), and wiggles around a bit.  When he's awake, he wants me right by his side.  I don't blame him.

At about 2 this morning, Bugsy woke up.  He was scared, he was agitated, he was groggy.  Through his sleepy fog, he called to me.

"Mommy!  Mommy!  Mommy!"
"What, Bugs?"
"Mommy, please get me up."
"I can't, Bugs.  You have to stay in that bed for a while."
"Please get me out of the bed."
"I can't, Bugs."
"Oh.  I can't open my eyes, Mommy."
"I know, Bugs."
"Will you please open my eyes, Mommy?  I can't see you."
"I can't, Bugs.  Jesus closed your eyes so your head can get better faster.  Jesus will let them open when He's sure you're ready."
"But I can't see you, Mommy."
"I know, Bugs.  I know."
"I love you even when I can't see you, Mommy."
"I love you too, Bugs."

Pray for us today as we begin recovery.  He's very swollen already and will continue to swell until swelling peaks, probably late tomorrow evening.  I especially ask that you pray for HIS peace as he can't open his eyes or see...and OUR wisdom as we try to explain.

~~~~~

For those of you who aren't "up to speed," yesterday was a very long day.  Our 3 year old, Bugsy, had a VERY long surgery...a cranial vault reconstruction, #3 in a series of recontructions to correct craniosynostosis, premature fusing of the skull sutures.  The morning started (for me) at 4:40am after about 2 hours of restless sleep.  I showered, rushed around throwing the last few things together,  woke up Isaac (and his daddy), and we were off to the hospital.  We checked in at 7 and had blood work drawn.  At 9:33, the nurse wheeled Bugsy away, plastic microphone in hand, saying hello to everyone he passed.  (The surgeons told us, at 10:30 last night, that when they wheeled him into the OR he looked around at all the nurses, and then said into his microphone, "Hello, Girls!" and flashed his dimples at them.)

And then we waited.

We got an update every hour.  "He's been prepped," or "He's open," or "Still reconstructing."  The one that had us scratching our heads was when the nurse told us, "Dr. Havlik is in a sterile field near Bugsy playing with the bones, trying to decide how he's going to put them together."  If you've been in our shoes, you can imagine how awkward that one was to hear!  We kept it as light-hearted as possible, though.  In fact, I asked that the plastic surgeon write "Dr. Havlik was here" on the bones when he was marking them.  (He told the nurse he ALWAYS does that.  If I see him again before we leave the hospital, I'm going to ask him where he wrote it.  I don't believe that he really does that, though.)  

The day went quick in some parts, slow in others.   For me, the hardest part of the day is always the late afternoon/evening.  I hate it when I see the waiting room start to clear out.  I hate it when I know that most of the patients are at home or in their rooms and we're still waiting.  Watching everyone else leave to see their babies, and knowing that we still have hours left is so painful for me.  Knowing that you'll be there when the nurses and receptionists leave, and that you'll be left to answer the phones yourself...

Anyway, at about 10 last night we finally heard that surgery was complete!  A scheduled "7 hour surgery" took about 11 1/2 hours...and with prep and recovery time, he was away from mommy and daddy for 13 1/2. We were able to talk to the surgeons a short time later, and around 11 we finally saw him.  We moved very quickly from the recovery room to the PICU.  We settled in around midnight, and here we are.

~~~~~

To ALL of you: Thank you so much for your prayers.  We felt God's peace in a big way yesterday.

To Tim and Angelita: Thank you for being a much needed distraction these last few days before surgery!  God knew what He was doing when he planned for you to be here at the exact time we'd really need you!  We love you both!

To Greg and Christine: Thank you so much for caring for Little Lou and Stinky when we couldn't!  You guys have been such a blessing!  I'm glad we've been able to support each other!

To Jack: Thank you for taking care of Harrison...and the house!  We appreciate your acts of love and service every time...EVERY time...we need you!

To our parents: Thanks for coming and spending the entire (grueling) day by our sides!  We know he's your grandson, but it still means a lot to have the support!  Thanks, Rick and Sue, for taking the kids home for the next few days.  We'll Skype with Little Lou, at least, later!

To Ashley: Thanks for organizing some meals for when we get home...AND for taking Little Lou for the afternoon Tuesday so I could finish up some of the packing!

To the Billey family: Thank you thank you for feeding us yesterday!  A special thanks to you, Aunt Maribeth, for doing the shopping and bringing the food...and for spending the remainder of the day with us!  (And thanks to pizza delivery boy Gene!)

To Mark: Thank you for stopping by and saying a very special prayer with Bugsy on Tuesday.  He loved it and I really appreciated you thinking of us.  

To anyone else who's helped with anything the last few day: Thank you from the bottoms of our hearts.  While we could have done this without you, we wouldn't have wanted to!  You've all made it that much easier.  

~~~~

Please continue to keep Bugsy (and mommy and daddy...and Little Lou and Stinky) in your prayers, especially the next several day a we face recovery!

We love you, Bugs!

We're sitting in the surgery waiting room at Riley Hospital for Children.  Any minute now, the nurse should begin her rounds, updating each family as to the progress of their respective little ones.  The last update, which came about an hour ago, was that Isaac was asleep and two IVs had been placed, one in his right hand and one in his right leg.  They were working on putting in an A-Line.  (Here comes the nurse...and another update...)

Prep was completed at 10:40.  Surgery should be under way!

Please continue to keep this little guy in your prayers:

(The Bug in the pre-op prep room, Goofy Juice underway!)

An interview with the Bug

Three weeks from this very moment, I will be sitting in a waiting room at a Riley Hospital for Children, nervously finding ways to pass time as I wait to hear the next hourly update about the Bug.  My family will be trying to convince me to get some lunch, and I will be refusing because I might miss the nurse.  I'll be playing on the computer, mindless staring at the tv, trying to hold in the panic.  I'll be laughing and joking with my family and all the while my heart will be pounding and my palms will be sweating and I'll be anxious.

The Bug, though?  The Bug is ready.  He gets headaches.  He doesn't like his "big head" because it isn't like the other kids'.  (Yes, some of them have been sure to point that out to him.)  He's ready for his "broken" head to be fixed.

I sat down with Bugsy a little bit ago to try and capture his thoughts on the whole ordeal.  We've been talking to him about surgery, telling him what will happen, and trying to prepare his as best we can.  He's about as aware as his little 3 year old mind can manage.  Here's the transcript from our chat.  (He and I have talked about this a lot.  I wanted to capture it, though, for him and for you.)

Mommy:  Tell me about your surgery.

The Bug:  They’re gonna cut my head, and they’re gonna put a new bone in it.

Mommy:  Why are they going to do that?

The Bug:  Cause some of my bone is lost.

Mommy:  Where is it?

The Bug:  At my surgery.

Mommy:  What do you think will be different after surgery?

The Bug:  My head.

Mommy:  What will be different about it?

The Bug:  Cause they’re gonna make it a different shape.

Mommy:  What shape do you think it will be?

The Bug:  Umm…a circle!

Mommy:  Are you scared about surgery?

The Bug:  No! 

Mommy:  Do you think your head will hurt after surgery?

The Bug:  I gotta go talk to Mak.  We’re on a safari right now.

And that was that.  Bugsy scampered away to hunt elephants and such.  Mommy, however?  Mommy is left to ponder.  

We've got big plans to cram a ton of summer into these next 3 weeks.  We're going to be living it up!  If you see us, say hi...and ask the Bug about his surgery!  He's pretty proud.

The Bug's Big Day

***I will preface this post with a warning.  There will be two pictures in this post of a 3D CT scan of the Bug's head.    Some people may find this to be graphic.  There is also some description of the surgery that will take place.  I don't think it's terribly graphic, but if you're squeamish, you may not want to read it.***

Yesterday, we spent the day at Riley Hospital for Children, "Bugsy's hospital."  He had a 3D head CT in the morning and then an appointment with both his neurosurgeon and plastic surgeon in the afternoon.  Some of you have been asking how the day went, so I thought I'd give you a rundown.  (This is copied nearly word-for-word from an email I typed earlier, so it may read somewhat like a letter rather than a blog post.  Sorry...didn't feel like rewriting!)

The CT went fine.  He was NOT happy about the IV.  They wrapped him in a sheet like a burrito...I had to literally lay across his body and hold onto the bed on the other side to keep him still even in the burrito!  He is really strong!  Anyway, it took 2 different veins and lots of digging before they got the IV in.  It was funny, though...once the ICU doc that does the anesthesia came in it went fast!  Bugs was asleep before he finished injecting the medicine...in mid scream he started snoring!  Not exaggerating.  I laughed.  The scan only took about 5-10 minutes, and then he woke right up.  He was groggy for half an hour or so, then we went to lunch and he perked up.  :)

The appointment went pretty well. They are not going to be able to address the back of his head at this time, so he may or may not need another surgery after this one to correct the back.  It will depend on how his head grows after this surgery.  They are hopeful that the asymmetry in the back will become a purely cosmetic issue after this surgery, and we won't correct him for a cosmetic issue.  For some reason (and it's VERY obvious in the CT) his head is growing up and back, but not forward at all.  Comparing earlier scans, his face looks more "forward" now compared to what it way, meaning that his forehead is almost pulling back from the rest of his face.  He has virtually no brow bone, and once again very little eye protection.

This is straight on from the front.  Note the asymmetry of the sides and the height at the top of the forehead.  There's also a very notable hole in the for

Straight on from the left side.  You can see how far backward he's grown, here. (It's not as noticeable with skin on!)  Oh...and the giant holes...

The gaps, which we thought were starting to fill in (and the surgeons did as well) are quite amazing.  Ear to ear, aside from a small bit of bone just left of center, he's got about an inch wide headband where there's absolutely no bone.  In the scan, you can literally see straight through his head.  There is NO protection for his brain at all there.  Just above his eyes, the width of his eyes (outer edge to outer edge) there's another spot that ranges from half an inch wide to an inch or side wide where there's NO bone.  There are several other smaller spots as well, but for some reason, a large amount of the spots where they had to cut the bone are simply not healing.  They don't understand why #1, he's reverting so much to his pre-surgical state, and #2, his bone isn't replenishing itself as it should.

For the surgery, as I said, they will not be able to address the back.  With as much work as they are going to have to do on the front, there's simply no way they can safely position his head to work on the back as well.  They will be starting at the front, above the eye sockets, and they will work their way back as far as they can safely go.  They'll be able to use the same incision line, which they are actually surprised about with the way his head has grown.  They were hoping to be able to cut out the scar and leave him with a pencil-thin line like he had after the first surgery, but that is very unlikely with what they are planning.  They'll be moving his forehead forward to create a brow bone, widening him through the temples, and reducing the height.  They're hoping to address some of the asymmetry on the sides as well, but not the back.  They'll remove any existing hardware.  He has several titanium screws and a titanium plate on either side of his head at the ears.  (We didn't realize this...or didn't remember...who knows!)  They will remove that existing metal and replace it as needed.  There are some screws that have come lose and are tender to the touch, so they will take those out.  (Yes, I did just say the Bug has some screws loose!)

As far as those gaps in the bone go, while they are still hopeful that they'll be able to fill them with "leftover" bone as they reconstruct, they are fairly certain that he will need a rib graft and/or titanium mesh to fill the gaps.  IF they can take just one or two ribs and that be enough, they will do the rib graft.  If it looks like they'll need more than 2 ribs, they will use the titanium mesh or a combination of ribs and mesh.  They'll prep him for the rib graft whether they end up needing it or not.  One concern they have for a rib graft for him is that ribs typically grow back, but since his skull bones aren't growing together as they should, they're not sure whether he'll regrow ribs, either.  One or two missing ribs isn't a huge concern, though.

Likely the reason he continues to have headaches is that his nerve endings, especially in that headband region, are right at the surface.  They would normally be covered by bone, but his obviously aren't.  Once they cover the gaps, he should feel a lot better!

We're expecting about 12 hours in the OR again...2-3 hours to prep, 8-9 hours of actual surgery...12 total hours from hand-off to recovery.  It's going to be harder for her to open him because she has to be so much careful with the "exposed" brain, but then removing the bone should be a bit easier because she doesn't have to make holes, they're already there.  They're anticipating we'll leave the hospital either late Sunday or sometime Monday.

That's pretty much the gist of it.  The neurosurgeon said we're "pros" at this, however unfortunately.  She also said she's praying this will be his last surgery.  :)  Have I ever mentioned how much we love our surgeons??

For the next month, I will try to carry on as normally as possible in the blog world...but please be forewarned that the day of surgery I will be using this as a place to update all of you as we are updated, and will likely post several times.  After that, at least for the next week, I may be updating daily or perhaps not at all.  It'll depend on the progress and how we're all feeling.  In the meantime, just know that we're ready for this.  Some of us are more nervous than others, but we all know that God is in control.

And the Bug?  The Bug is the most ready.  He is ready for a "normal shaped head."  He wants a "small head like Little Lou."  It's almost game time.  We're ready.

A letter to my Bug

I am so glad you were born.

              

You came rushing into the world after just 45 minutes of labor, into the freshly-gloved hands of our street-clothes wearing doctor.  As you lay on my belly and I cut your cord (Daddy didn’t want to), I could tell that something wasn’t right.  No one said a word.  I didn’t say a word.  I knew my concerns would be brushed off as “molding” from birth.  I am sure everyone else hoped for the same.

When you were just 18 hours old, a nurse felt your head and made a funny face.  She said nothing.  Moments after she left the room, a pediatrician we’d never seen came in.  She felt your tiny head, and left the room.  Minutes later she returned, followed by an x-ray machine and 4 techs.  Your soft spots couldn’t be found.  Something was wrong.

When you were 3 days old, we made our first of many—too many—trips to your pediatrician.  When you were a mere 3 weeks old, we met your neurosurgeon.  You had your first CT scan.  We scheduled your first surgery.

Craniosynostosis.  A word that has forever changed our lives.

Four of the six sutures in your skull had fused before you were even born.  The last of them isn’t supposed to fuse until you are nearly 30.  Your little head couldn’t grow.  Your brain was out of space.  You cried in vicious, screaming pain, for 5 ½ months.  The hour or two you slept in a day were spent on mommy or daddy’s chest, upright in a recliner.  We slept in shifts so that someone would be with you constantly to hold you upright, so your head would hurt as little as possible.  We shopped in shifts, so that each of us would get a brief break from the crying.  (I’m sorry, Bud, but we just needed to get away sometimes.)  We were confined to our home, not because you were sickly or unable to be around others, but because you couldn’t stop crying, even with round-the-clock pain medicine.

Two surgeries and a who list of new vocabulary words later, at 10 months old, we finally met you.  

Your pain was finally gone, and you became the happiest baby we’d ever met.  You rolled over for the first time before we left the hospital!  Three years of 3-5 times a week therapies later, you became a “normal” preschooler.  You’re nearly caught up to where you should be!  We’re so proud of you!

In just 6 weeks, you’ll be going into that operating room again, for your sixth surgery in 3 ½ years.  Just a month shy of your 4^th birthday, you’ll face the unknown once again.  Your daddy, your big sister, your little brother, and I will all be waiting for you on the other side.  We’ll be praying for you and longing for you.

You have brought more joy and laughter to our lives than we could ever have imagined.  You are such a ray of sunshine to everyone you meet.  You don’t know a stranger, and your dimples can melt the heart of just about anyone.  I am so glad I have had these years with you.  I am so glad you were born.

The Call

I just got "The Call."

If you've ever had a child who was slated for a major surgery you'll understand.  You know.

The Call
       that says in 5 months and 9 days your Bug's life will change if even just a little.

The Call
       That your 3 year old will be making his 6th trip to the operating theater.

The Call
       that says it's real and your Bug will be there, in that hospital, again.

The Call
       that reminds you of weeks and months of wound care and recovery.

The Call
       that the surgeons have coordinated schedules and are already prepping for your little Bug.

The Call.

Bittersweet.  Emotional.  Both heart-breaking and encouraging.  Terrifying.  Heart stopping.  Miraculous.

The Call.

Surgery is set for June 29th, 9:00 am.  Please begin praying now, if you haven't already, for Bugsy and for
his surgeons, Dr Jodi Smith and Dr Robert Havlik, and for all the nurses and staff at Riley Hospital for Children who will be caring for our little boy again.

Craniosynostosis stinks.

Back to the OR

I got a note from a friend tonight. Her little girl is scheduled for a "routine" surgery in January. What a day to hear that news!

In our little family, we've endured 8 surgeries in just over 3 1/2 years. EIGHT. Some of those surgeries have been labeled as "minor" or "routine." some of them have been "difficult cases." As I listed them off for Shannon, I started thinking. My five year old has had 2 "routine" surgeries. My three year old has had 3 "routine-ish" surgeries and 2 major, "difficult" ones. The thing is, NO surgery is easy, routine, minor, when the patient is your baby. I'm praying for my friend and her little one as I know she prays for mine!

It was an interesting day for the news, though. Today we tentatively scheduled surgery #6 for our little man. Another big one. Another inpatient hospital stay. Much harder this time because he'll be almost 4 and he'll have some idea of what's going on.

You see, our little man was born with craniosynostosis. That's a big word that means sutures in his skull were fused. When Bugsy was born, 4 of the 6 sutures in his skull, the gaps in bone that allow for the head to "collapse" and the brain to grow, were already fused. His skull could not collapse during delivery, there was no room for his brain to grow, and he had no soft spots. Bugs spent the first 5 1/2 months of his life with severe intracranial pressure. He lived most of that time on Tylenol with codeine around the clock, rarely slept, and cried nearly nonstop. At 5 1/2 months he had his first surgery which provided nearly a month of relief...and then it was back to constant pain. At 9 1/2 months he had a second surgery. Since that time he's been relatively pain free, aside from the occasional headache!

We've known since that surgery that he'd likely need another surgery. There have been some large gaps in his skull that haven't filled in. Today we met with his surgeons to discuss surgery to fill in those gaps.

Good news! The gaps have finally begun to fill in on their own! There are just some small gaps remaining, and it looks like they may not need to be filled surgically!  We were really excited and thought we were going to leave the office without scheduling surgery.  Then the plastic surgeon came in.  It didn't take long before he said, "There's no advantage to waiting for Isaac's next surgery.  There's no disadvantage to waiting for Isaac's next surgery."  Basically, through observing Isaac's skull shape and talking with us for a few brief moments, he's determined that the asymmetry of his little skull and the height of his forehead need to be addressed.  We don't even know, yet, what all the surgery will entail, as the surgeons will wait until they see a CT scan, which will be completed about a month before his surgery.  He left it up to us to schedule surgery when it's "convenient" for our family.

Is surgery ever convenient?  Wow.  I don't think it is.  Thing 1's in school, though, and Bugsy will be in a year and a half.  Some quick conversation brougt us to the conclusion that June 2011 will likely be the best time for us.

And so, we begin yet another year "looking forward" to surgery.  We covet your prayers for our little miracle man, for our other children (particularly Thing 1, who will be nearly 6 and will much more fully understand what's going on), and for ourselves as we look toward this next operating room visit.  There'll be a lot more to our "prep" this time, as we'll have to make a 3 year boy and a 5 year old girl understand that even though Bugsy will look different, he'll still be the same little boy.  We'll have a harder task keeping that same little boy calm for recovery than we've had before.  We may even have a harder time watching it all happen than we've had before. 

So again, we covet your prayers.  We've come so far in the last few years with this little guy.  We're hoping this will be our last trip to the OR with him.  But no matter what happens, we'll praise the Lord for the work He's done in our family and the work He continues to do!  Thank you Lord for being You!