i can throw a tantrum if i want to!

Dr. Puccioni's office called to reschedule the surgery.  I was pretty anxious when I heard the word "reschedule", but it is now set for Thursday, December 8 - just one day sooner.

I have to admit I'm not sure how I feel about the whole situation. We have been down this road before, and I'm not sure if it is an advantage or disadvantage.  I dread the fact that my baby girl will undergo a major surgery.  I dread the fact that I will hand my baby girl over to a surgical team and be forced to give up all control.  It's natural for parents to be protective even in simple situations, and I know this is humanly impossible. Again, I am begging for the peace that passes understanding.  Aaron and I will pace the lobby waiting for a staff member to give us updates.  We will try to make small talk.  We will suppress our anxiety to stay strong for each other.  Or take turns breaking down.
I dread spending that horrible first night in PICU.  I am praying that God will give the staff the resources to make Adeline more comfortable.  I will not allow a repeat of the last experience.  We will watch and wait as her face swells and turns purple from bruising.  Her eyes will swell shut.  I dread hearing her cry but not know what she wants.

But also know that she will get through this.  She will be even more perfect after it is over.  We can prepare - we will bring something to occupy our time while waiting for surgery.  I am going to buy the obnoxious Rock on Elmo doll that she dances with when we walk through the toy isle of Target, so that she can hear and touch something familiar and fun while she can't see.
She will amaze us with her bravery.  She has been practicing - she is the most courageous and stubborn little girl I have ever met! She went two days at the sitter refusing to drink anything.  We were beginning to think she had a sore throat, but it turned out she simply wanted a straw in her sippy cup.  I don't have that kind of determination. (It turns out that Grandma Hot Dog has special sippy cups with a straw.  She had used them over the weekend and it obviously changed Adeline's life!)
By this time next year her hair will cover her scar.  Strangers will never know. We know that by this time next year we will be looking forward to spending the holidays with our healthy round-headed children. And she will "get over it" way before we will.

There have already been a few times where my 6 minute drive to work has ended in tears. (Darn K-LOVE!) This time around I am allowing myself to get angry, irritated, annoyed, saddened. I am being selfish. I think I'm even going to go put a straw in my Diet Pepsi can.

roll up your window, mom.

I cannot sing a note.  I can't even stand to hear my own voice with my own ears.  But it doesn't stop me from singing -at least when I am by myself or in front of my kids.  I have found that when things are tough I use music as a prayer, and a distraction. Why else would God give someone with such a disturbing singing voice such a desire to sing?  Everyone has had a time where they are driving down the road upset or confused or angry or  depressed and that PERFECT song comes on  that just speaks to you, that fills you with serenity or hope or happiness.

So it may seem that my perfect song lately would be a powerful ballad by Martina McBride or Sarah McLachlan.  I spent a lot of time listening to "Praise You in this Storm" by the Casting Crowns during Adeline's last journey with craniosynostosis. ( Blog Entry: My help comes from the Lord )  I was addicted to christian radio.  But this time the theme song is "I've got the Joy, Joy, Joy, Joy Down in My Heart"!  It's therapy for all of us - but sometimes it drives Nile crazy!  The part that really gets to me (even though it's sung in high-pitched children's voices) is "I've got the peace that passes understanding down in my heart". Because that is truly what I pray for now.

Philippians 4:6-8

⁶ Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. ⁷ And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.

 ⁸ Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.

(I also found an awesome "adult" song that I found expressing the same message: Aaron Shust - My Hope is In You  But I don't have that in my car!)

Dr. Miller's office called on Friday to let us know that they have Adeline's surgery scheduled for December 9th.  I'm not sure why it only took 2 days to schedule - either the insurance company received all that they needed and approved it extremely fast (which I doubt) or the surgeons made an exception since Adeline is already a patient of theirs and they trust that our insurance will pay.  Either way, it helps having a date.  We can plan where we are staying, make arrangements for Nile, and prepare for the weeks following the hospital stay when Adeline will be at home recovering.  And it helps me to move forward and focus on the great possibility that this will all be over soon.  By this time next year Adeline's hair could be long enough to hide her scars again.  She will be a fun, curious and beautiful  TWO year old - with a rounder head!  And, most likely, with even more attitude!?!  I can't wait!


But until then I will be cranking up the car stereo, rocking out to track #15 on Nile's Sunday School Songs for Kids CD.  So what if I'm already embarrassing my children.

Here we go again...

There were a couple of hours of pure denial.  I really impressed myself.  We checked out of the clinic and then listened to Nile tell us how absolutely starving he was as we drove up and down Highway 6 trying to compromise on a place to get lunch.  I have never been a good liar, and I am especially not good at suppressing my feelings in the company of a close friend or loved one. But I was coasting along pretty well.  I wanted the "everything's gonna be alright" phase to last a little longer.  I've already been through the scary, uncertain, out of my control phases of  having a child with a condition that needed surgical repair.  And I remember that I didn't enjoy that.  I'd much rather spend time in the "she's recovering wonderfully, she's very happy and normal, things couldn't be better" phase.

Dr. Puccioni, Adeline's neurosurgeon, consulted with us for at least 45 minutes, but he didn't waste anytime before telling us that she needed further repair. During her first surgery (already almost 10 months ago!), in addition to totally removing, reconstructing and replacing her posterior scalp, the surgeons remove the fused sagittal suture that ran down the top of her head as well as bone on either side to allow for normal growth and expansion of the forehead.  The "normal" growth and expansion occurs in 90% or more of  patients.  But Adeline's forehead didn't "reprogram" itself.  It continues to grow long and narrow and is not increasing in width. As a result she has more pronounced forehead, or "frontal bossing" and lateral pinching of the temples.  It is not going to get better, in fact, it will get worse.  We could wait until it gets worse - we talked about how many parents in this situation wait until their children are 4, 5 or 6 years old.  We think Adeline is a beautiful, healthy baby girl (and of course, the neurosurgeon agrees!)  But by the time she is school aged, and is developing a "sense of self", the birth defect will be very evident. He told us that he firmly believes that a person's pysche is a vital element  of her health and well-being - just as important as any other medical condition that could be caused by craniosynostosis.  So when these kids enter school and realize how different they are and the parents realize how different they are, the parents are more than ready to correct the defect.  It is inevitable.  And he would be more than willing to perform the surgery when she is older.
But there are too many reasons to do the surgery now.  
She is still very young.  Her skull is still somewhat pliable. 
It is easier and safer to remove from her brain right now. The length of surgery will be shorter and blood loss will be less than if we wait.
She most likely will never remember the surgery.
She has a pacifier, a blankie, loves to be cuddled and rocked, sleeps in a crib, and goes to a home daycare.
She won't care that her hair is shaved.
She won't have to be taken out of school or miss out on summer activities.


So this stinks. It's almost worse now that we have been through it and know what to expect.  And I know things could be a lot worse. We are sooo blessed.  I know things will turn out fine - that this has to be done.  But I still despise the fact that it does.  
We have been enjoying our family of four lately. Nile played T-Ball this summer - Aaron coached.  And he started all-day preschool this fall.  We have been busy with school activities and watching Iowa Football and playing outside and spending time with friends and our extended family.  We haven't had much free time to worry about anything.  Adeline and Nile are young and naive and happy and fun and spoiled.  This is what Aaron and I have looked forward to since we first fell in love.
I know that this doesn't take this all away, but it doesn't exactly fit in my perfect plan.


So now we are back to waiting for the insurance preauthorization process.  Dr. Puccioni's (Neurosurgeon) office contacted Dr Miller's (Craniofacial Surgeon) office today.  They will write letters to the insurance company and wait for the insurance company to authorize the surgery before they will schedule it.  Luckily, our insurance is Blue Cross Blue Shield, and since one of the big-wig's sons was born with craniosynostosis, they usually authorize quickly.  I hope I am more patient this time.  It would be nice if she could have it done this year since we have already applied payments to our out of pocket maximum.  But it's not our priority.


My love for her grew so fast during the last surgery and recovery - I can't imagine how I will feel when this is over.


So I'm back to obsessively kissing that (not so perfectly round) head of hers.

Ob-La-Di, Ob-La-Da!

Well, Adeline is now 1 year and 22 days old.  She is almost 6 months post-op.  And she continues to be amazing.
She isn't walking yet...and why would she?  She has a much better view when she is on the ground crawling or being carried around in someone's arms.  She practically crawls up the back of my legs, and clings to my calves as I try to get as much as I can done before I pick her up and have to work one-armed.  When she is in my arm she studies my every action.  She extends her neck over the stove to watch me add the ingredients and stir.  She reaches in the pantry and grabs what she can as soon as I open the door.
But she is most destructive when she is on the ground. If something can be dismantled she will find the way (even door knobs and drawer pulls).  Cupboards are emptied in minutes.  My purse or her diaper bag takes a little longer because she studies everything (most likely to determine if she can put it in her mouth) before she throws it behind her back.  She has a gift of detecting when a stairway is not gated.  She races toward it and darts up the stairs.  I have even witness her strong-arming the gate and pushing it out of the way.  She is determined to explore every inch of her world. She gets pretty darn mad when I stop her.  I destroy many aspirations with the words "no no!".  She hangs her head, her lower lip quivers, and then the waterworks begin.  How could I discourage her from following her dreams?! 
My house is a mess.  And I cannot be more grateful.

She says dada, momma, Jo Jo, tank tu (thank you), oh-oh (A LOT!), what's this? and something that sounds like "Zsa Zsa" all of the time. When I get to Jo Jo's after work and scoop her up in my arms she pushes my head to the side to see if I am wearing earrings.  She examines one ear at a time by using her fat little hands to turn my head each way. For months after her surgery she wouldn't let anything touch her head.  Now she lets me put obnoxious headbands on her and loves to touch them gently while she wears the "pretty".  She loves to have her toenails painted. She hisses and laughs when she sees an animal and meows and hisses at Pete our cat. She chases him until she gets at least one handful of cat hair everyday.  It disgusts me.  She gets most excited and delighted when she sees my dad.

Nile absolutely adores her.  He tries to keep her interest, and takes it personal when she would rather pull wipes out of their container than have a picnic with him.  He can't wait until she can play outside with him. Or play games with him.  I know it will be just a matter of months before she is driving him crazy.

She eats almost anything. With passion!  She didn't want to touch her first birthday cake, so I put a little in her mouth.  And then I couldn't get it away from her!

We celebrated her First Birthday with 2 parties: One in Kansas City with the Laake clan and one in Sheldon with my family.  Every first birthday is something special - Nile's was one of the proudest moments of my life - but I noticed something extra special while I watched Adeline's family celebrate her first year. I received a few extra hugs, and even witnessed some tears.  She is loved.

Her hair has grown over her scar.  You can still see it in the sunlight - her hair is very light - but no one notices it.  The back of her head is perfect, and the front seems to look better every month.  There is still narrowing when you look from the top.  But she is in no pain.  The only pain she experiences is the daily fall to her knees or bump to her head. She is 10 times more daring than Nile has ever been, and she usually ignores any minor injury she faces. Her mouth is full of teeth working their way through her gums, which seems extremely painful to me.  But she's a tough cookie.

The Iowa Registry for Congenital and Inherited Disorders sent a packet asking me to participate in the National Birth Defects Prevention Study.  I had mixed emotions when I opened it. I feel a responsibility to raise awareness and support research, of course.  But I have been so focused on enjoying our "normal" little girl that I think I try to forget the severity of craniosyostosis.
She's so busy being a 1 year old and I'm so busy being a doting mom that life gives me less time to dwell on it. Thank. God.

time can heal

So we didn't get the "don't worry about it, everything's fine" report that I was hoping for.  But things could be much worse.
The Physican's Assistant came in first.  She was very kind, and it was comforting to see her interact with Adeline and Nile.  But she jumped right in with talking about a second surgery.  She commented on how nice and round the back of Adeline's skull is, but also narrow the front is.  She said, "She just might be one of those few that does need a second surgery on the front."  It's difficult to remember anything she might have said after that. (And the fact that Nile was scaling the exam room furniture like Spiderman didn't help my concentration either.)
As soon as she left the room I looked at Aaron and said, "Dr. Puccioni will come in here and say something completely different."
I was somewhat right.  He came in and played with Adeline a little.  He commented on her chubby cheeks and big blue eyes. I'm sure he knew I needed some sort of sedation - and nothing eases your mind like hearing how beautiful your baby is!  He told us that she seemed very happy and healthy.  And we agreed.  We talked about the difference in her personality and comfort level since surgery.  She sleeps well, laughs all of the time, and is always exploring.  He talked again about many babies don't experience the pressure on the brain like Adeline did.  And how pleased he is that she is doing so well now. 
And then he examined the front of her skull.  He told us that her temples are still "pinched".  Her head is growing from front to back, but isn't expanding from side to side. But the fused suture that they removed went all of the way to the front of her skull, and the opening they created by removing it was still there.  And that is good.  As her brain grows it should force her skull to widen.  And that may take time.
He wants to give it a year post-op and see how it looks then.  He reiterated that he would never do a second surgery less than 9 months after the initial surgery.  So we won't plan on seeing Dr. Puccioni again until early next year.  Wow.  If she starts to show signs of pressure - becomes inconsolable, wakes frequently at night, change in appetite - we are to contact him right away and he will order a CT scan.  He said at least we know what to look for since we have already experienced it.
We will continue to see her Craniofacial (Plastic) Surgeon, Dr. Miller, at least a couple of times before next year.  And they will always communicate with each other. So the appointments with him should help ease my nerves and allow me to ask the crazy questions that my mind will create in the meantime.

I guess this is just another test in life.  Nine months is a long time to wait  - I've done it before, twice!  And both times I was blessed.   How will I spend this time waiting?  Will I drown in the what-if's and nightmares of what could happen? Will I grow angry and resentful? Or will I remember how lucky I am and spend this time loving and appreciating and learning from my beautiful children (and husband!). And giving praise to God for all He has blessed me with?  Will I allow God the time needed to heal Adeline? Or will I try to take control of the situation myself by contemplating and obsessing over that little (not so round!) head. I'm sure I will do a little bit of it all - worrying is one of my "finest" qualities. 

Now I will focus on praying for Adeline's head to grow as it should.  I will pray that she will continue to be healthy and happy and full of curiosity and everyday surprises.  And I will pray that God will give me the courage to let go and let Him do what He needs to do.

It used to drive me crazy when I would cry to my dad when something absolutely horrible would happen in my life - like when I'd get into a fight with a friend, or wouldn't get the grade I studied so hard to get, or when my sister wore my shirt without asking.  And instead of making it all go away...he would tell me to say the Serenity Prayer.

Well, God you will be hearing these words A LOT from me these next nine months!!!

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuhr

(thanks dad!)

perfect timing

We've had a wonderful month of laughing and cuddling and growing (even hair!) and breezing through milestones.  Adeline is a happy, fun, and very busy little girl!   She's babbling and repeating some sounds - if she sees Pete, our cat, or if you ask her her what a kitty says she hisses! She says "Hi!" and "Oh, Oh," (and loves to play the "drop game".) She patty-cakes, loves peek-a-boo, and throws her arms in the air when you say "Soooo big!"  She's cruising the furniture, and walls, and doors...she will grab onto anything she comes across and will pull herself up for a better view.  Anything that we carelessly leave on the coffee table will be inspected and then thrown to the floor.  And if there is one itty-bitty piece of anything left on the floor she will hunt it down and put it in her mouth.  She is surrounded by baby toys but prefers anything electronic, or anything her brother wouldn't want her to touch.
Basically, she's a normal, healthy, happy, and curious 10 month old girl.  And we cannot even begin to express how grateful we are for that.

We've had one small set-back.  I (along with our daycare provider) have noticed that Adeline's head isn't as round as it was after surgery.  Her head is growing, but it seems to be becoming elongated again.  I took her to a follow-up appointment because she was put on a nebulizer for wheezing, and I mentioned it to the pediatrician.  I was hoping the pediatrician would say that she thought it looked fine, and not to worry about it.  But she didn't.  She asked when Adeline was going to be seen again by the craniofacial doctors.  Long story short, Adeline's April follow-up appointment with her neurosurgeon was moved from the 19th to tomorrow. 

I am sure that we are all overreacting.  I am sure that the neurosurgeon will say that everything is fine - it has been only three months since surgery - she has a lot of time for her head to "round out" again.  They said from the begining that they wouldn't even consider a second surgery until 9 months post-op.  But I can't help but feel that nagging "mommy instinct" that I tried to ignore when I first noticed that Adeline's little head wasn't normal.  And to be honest, I don't like it.  After Adeline's surgery I swore that I would never put her through that again.  That no matter what, that horrible week was not worth it.  But now that I know how much it has helped her - now that I know how much she was suffering the couple of months before it - now that I know what could happen if we didn't allow the surgeons to release the pressure on her brain and reshape her skull - I know I have to put my selfish fear aside and trust that God will guide the surgeons to do what they need to do.  But, God, please tell me we are all overreacting.

So as I was getting Adeline ready for bed tonight I spent a few extra minutes kissing that little (not so round!) head of hers.  And I told myself not to become obsessed with the what-if's.  And God sent me the perfect little gift, at the perfect time.  An amazing "cranio-mommy" created a Craniosynostosis Awareness video with pictures of beautiful children wearing headbands and "do-rags" that she made and sent to each family.  I have to admit, I didn't get past the first 10 seconds of it - I started bawling and had to shut it off!  But I am going to force myself to stomach it before I go to bed tonight. 

The link is to a Facebook page, and I don't know if it can be seen outside of facebook, but it is worth a try.
Avery's Angels Awareness Video
I am hoping she will post the video on her webpage http://www.averysangels.net/ so it can be seen by anyone.

Godspeed baby girl.

and she's vertical!

Adeline has been working hard at making mommy and daddy very nervous!!!  She is pulling herself up to EVERYTHING...the furniture, our legs, walls, doors.  She is fearless!

It seems she is doing something or saying something new everyday.  Today she said "Oh-Oh" when she dropped her toy at church for the 160th time.  I just couldn't get upset with her then!
And she says "Ma Ma", but only when she wants to!
She started eating tiny bits of banana.  And shovels down Gerber "puffy treats" (as Nile calls them) like she will never eat again.  I really don't think her thighs could get any bigger!  It's a good thing that she is so active - I don't know how much longer her pants will fit around those thighs!

She had a bad ear infection and cough last week.  The doctor put her on a (very strong dose of!) antibiotic and an abuterol nebulizer.  She said that she has "Baby Asthma".  Something that she will most likely grow out of...and something pretty common and easy to control.  I have to admit she looks pretty helpless with the little mask on her face...until she gets tire of sitting - and yells and cries and pulls it off.
She is one tough little girl!

It is so much fun to watch Nile and Adeline play together.  And it's nice that they can keep each other entertained.  I'm sure the fighting and tattle-telling will start soon, but I'll enjoy this while it lasts.

About a month ago I read about a 16 month old boy that was dying of an illness that his brother had passed away from at 18 months.  It was the first time that I had been exposed to a child and family with an illness since Adeline's surgery.  And it hit me like a semi-truck.  I was an open wound.  I bawled and bawled - WHAT IS GOD THINKING?!?!  There are so many more horrible, unimaginable things that my family and I could go through.  And I don't want to!!!  And I don't want anyone else to have to go through them either!!! 
But through reading the mother's on-line journal, I am realizing that (if you ask for it, and are open to it) God does give you what you need to keep coping and living and loving.  Sometimes you are so numb and traumatized by what you are going through that you aren't able to function, but God will provide people to embrace you and carry you through.  Or He will carry you Himself.  If you let Him, he will give you just what you need to get through that moment, or hour, or day. 
And I don't know what I will need to ask for...I don't know what He has planned.  And I still don't want to know.  But I also don't have to live in fear. 
It is my duty as a mommy to enjoy every day with my beautiful, amazing children. It's not fair to them for me to be scared of the unknown. I surely don't want them to live in fear.
But I will have to ask God to grant me the courage to let go.  And I may have to continue to ask Him every day...or every hour...or every moment.