Sunday, December 8, 2013

Happy 2nd Cranioversary, Adeline Cecilia!

So, it's been two years since I have posted in this blog.
I spent 18 months using it as therapy. And then I stopped...probably because I didn't need it anymore.
Aaron and I were discussing Adeline's December Cranioversaries this weekend and I jumped on the blog to confirm the dates.

I found it hard to scroll through the posts.

It's been 2 years today since her last cranial vault reconstruction.
Two years of being blessed with the gift of not having to deal with a “sick kid”.
That might sound harsh, but it's true.
God never gives you more than you can handle...but when you are handling what He gives you it sure can be hard. And there is nothing that brings you to your KNEES like a sick kid.

Aaron and I have been enjoying the easy road these past two years. And we have really let our guard down this year...we are truly allowing ourselves to celebrate the Christmas Season. I even bought an Advent wreath...and a book to go with it! I make the kids listen to me as I read. And they answer the Advent inspired questions I ask – even though they are completely annoyed and would rather just eat.

I'm not sure how I would be living day to day motherhood if it wasn't for our cranio-experience. I am able to make a conscious effort to enjoy every moment. And the moments I just can't enjoy – I remind myself that nothing is permanent. Life is certainly not perfect. But my heart is happy, my kids are healthy, and my little family is learning new reasons to love each other every day.

Adeline is a curious, intuitive, passionate pre-schooler. She loves to dance, sing and make friends laugh. She'll talk your ear off and then test you to make sure you were listening. She's almost potty-trained and sleeps in a “big girl bed”.
And she LOVES to throw a party.  She doesn't even need a reason - but she's good at making a reason up! Grayma and Graypa and a few close friends are coming over this afternoon for cupcakes with sprinkles.  She has a reason to have a party today.

I can't wait until Adeline can fully understand the gifts that she has given us through her cranio-journey.

God is sooo good!     

Thursday, December 15, 2011

witnessing a miracle

Monday, December 12, 2011






Sunday, December 18, 2011

So, I've been taking a few pictures throughout this "journey".  An outsider would probably think it's pretty crazy, if not disturbing, that I insist on photographing every detail.  Why in the world would I want to share or remember images of my daughter at (please, God!) the most terrifying and painful time of her life?  
Each picture gives more hope.  Would I be taking pictures if I wasn't convinced that Adeline will fully recover?  Probably not. There were plenty of times that I didn't pick up the camera - saying good bye before the surgery, the vitals, the blood draws and cries of pain, etc.   There are so many stories of childhood illness and suffering that do not have a happy ending for those left behind.  Adeline's story is of strength, hope, faith, medical miracles, and Divine Mercy.

She is like a perfect package revealing itself little by little, day by day.  I feel this is a gift - it's a gift to be able to capture a miracle unveiling itself.  These are events that tell a story of what is possible with loving parents, a strong little girl, brilliant, talented surgeons, a loving and supportive family and community, and a omnipotent, loving, merciful, miraculous God.  I am recording a celebration of life.   

I have gained so much in this past year and a half.  My relationship with God is more intimate.  I have been granted the peace that passes understanding when I needed it the most.  I can't understand all that life has handed us, and I couldn't fix it or even cope with it all on my own.  But He gave us the tools and resources and people that we needed to bring it all together and correct the problem. We I have tangible proof that He is good.

What a week!  I had the same constant anxiety that I felt when I was on maternity leave with Nile.  A lump in my stomach and over-reaction to every move or sound she made.  I even forgot to eat at times... I NEVER forget to eat!!!  But she was WONDERFUL!  She just needed to be home.  She rediscovered and studied every toy in the house using her barely open right eye.  She ran from room to room, saying "Hi" to everyone and everything each time.  She was beyond happy.  And she was exhausted.  I have to admit I was selfishly terrified that she would never sleep soundly or on her own again.  My mom spent Sunday night with us expecting to help throughout the night.  But Aaron laid Adeline in her crib late that night and she didn't make a peep for nine straight hours!!!  I would have been going crazy with worry if we didn't have the video monitor.  I kept checking the monitor throughout the night, but my mom admitted she opened her door and went in her room at least three times.  And, for the most part, she continues to love to sleep!!  Thank the Lord!
She had a few days with episodes of pain - it's unrealistic to think she wouldn't. There is nothing worse than the sound of a child crying because of discomfort.  And her pain medication dose is the same as it was last year - I guess they figured it was enough.  But she has kept herself so busy and so distracted it barely slows her down!   She has been doing so well these past few days that I have only had to give her tylenol to keep her fever down.  She had her last dose of antibiotic tonight.  I would still want to be in a comatose state if it was me!

Grandma Hot Dog has been helping out, providing extra love and attention this weekend. Adeline and Nile will both miss her sooo much when she leaves.  And Aaron and I will too...she has this amazing ability to relieve stress and gingerly smooth the way.  But I'm sure she will be exhausted by the time she gets home!
Jo Jo stopped by to make up for all of the cuddles and kisses she has missed the past couple weeks.  Adeline wrapped her arms around Jo Jo's neck and put her head on her chest, just like she had been doing every day for the past year and a half that Jo Jo has taken care of her.  They were both in need of a  "rockabye" fix.

It is going to be very hard to go back to work tomorrow.  I will miss everything about her.  I will miss watching Dora and hearing Adeline answer "No" to every question Dora asks.  
Dora: "Do you want to go on an adventure with me? 
Adeline: "NO!"
Dora: "Do you see the baby jaguar?"
Adeline: "NO!"
Dora "Can you say rapido?"
Adeline: "NO!"
Good thing Dora has a high self-esteem and just keeps on going.
And I'll miss snuggling, and dancing (I have never met a child that loves to dance soooo much!), and singing, and saying the ABC's over and over, and getting kisses, and playing.  UGH!  This is going to be hard!
But Aaron will take good care of her this week.  And my mom will spoil her rotten next week.

I guess that's part of the gift - life is moving on.

Sunday, December 11, 2011

um, i'm gonna need some xanax, STAT!


Despite her appearance and anxiety, the Neurosurgery partner of Dr. Puccioni that stopped by this morning was happy with Adeline's progress. Dr. Miller said everything is looking good too. As expected, the anterior reconstruction caused more swelling in the face, and it is normal for the swelling to come and go. We have somehow convinced him that we have enough experience with this to know how to take care of her on our own. So he gave us a choice: we can stay another night for observation or we can go home and give him a call if we need anything. Her antibiotics are now oral and she has just been taking Lortab for pain today.  It didn't take me long to tell him that she wants outta here! Yaaay God!
The nurse came in soon after to give her meds. She was still sleeping -in Aaron's lap - but we woke her up.  I made the mistake of talking about going home in front of her and she practically jumped out of Aaron's lap onto the floor!  And then she remembered that she still had I.V.s in her feet. Major fun-crusher.

The nurse was amazing at doing her vitals and taking her I.V.s out. I wish she would have been here the whole time!   I brought Adeline into the playroom thinking she would like the feel of the soft floor on her newly freed feet, but I was very, very wrong!  She must have changed her mind about making a run for it when she realized she still couldn't see.

So now we're gonna see if she will eat a little something (she hasn't eaten since early last evening),  pack up, get her discharge instructions and head home sweet home.
Her eyes have opened just enough so that she is ready to be brave and explore.  I just heard Aaron from the hallway, "Wait, Adeline!  We've gotta hold hands!"  And I can hear her tell every one "BYE!!!"Good thing she is keeping us busy enough so that I don't have time to worry!  Another one of God's gifts of distraction.

I know it's not going to be easy, but I can't wait!

i even googled to find a "open her eyes" prayer

But I've been having to make my own up.
Adeline's eyes have swollen completely shut again.
And she's miserable.
We spent the night cuddling in the hospital bed. She reminded me of our cat Pete. She would become uncomfortable and then wiggle and maneuver her body around until she found the perfect spot to rest her heavy head. Sometimes it was my shoulder, sometimes my stomach and sometimes even my face.
She itched her head and ears so hard all night I thought she would be full of scratches this morning. I gently rubbed her prickly swollen head over and over. Just barely touching so that my hand would just graze the stitches as it passed. She really liked that.  Her hair is already showing. And the swelling has gone down enough on the top to begin to show her familiar bumps and divots, and to reveal some of the new ones created on Thursday. Dr Puccioni is right - she does need hair!
I was discouraged by the nurse's reaction to the swelling. I know she didn't mean for her disappointment to be so obvious, but when she turned on the light and attempted to do a neurological eye assessment her face said it all. Adeline's eyelashes were buried in her eyelids again. I fought back tears.  Adeline cried and cried during her 6 am vitals (as always) but the tears could barely leak through.  Her nose has started to run. 
The nurse helped me sit up in the chair and she fell asleep in my arms again.
I waited for the nurse to leave and then allowed my tears to fall.  Poor baby girl.  We ALL want this to be over. 
We all just want to go home.

Saturday, December 10, 2011

getting her groove back

The day started pretty rough. Adeline spent all morning in daddy's lap, trying to get comfortable.  She would wiggle and struggle and cry her raspy cry, and then finally pass out for a little while with her face in her blankies.  We ended up giving her another dose of morphine at about 3 pm.  We just couldn't stand to see her so uncomfortable.

Grandma, Grandpa and Nile came again soon after.  Grandma snuggled with her for a little while, but then the pain and anxiety became too much for the morphine to handle.  We walked and walked and walked around the unit until our arms couldn't take it anymore.  Did I mention how heavy a 25 lb baby gets when they are retaining fluid and swollen from head to toe?

Around 5:30 Grandma was taking her turn and we stopped back at the room.  I was talking on the phone and grandma laughed, "I think her eye is open a little!"  I looked up and could almost see a small slit of her left eye.  She was probably rolling her eyes at me (but I'll never know) because I may have over-reacted a little with excitement!  I really didn't expect her to turn around so fast!  She soon threw her arms out at me and said, "MOM!"  I cried with excitement and scooped her up and over-kissed her cheeks again.

And then the fun was time to rediscover all the things that she had heard and touched and tasted in the past couple of days.  She went right back to Grandma and was looking for the necklace that Grandma usually wears. And then she whipped her head back and forth to see who was making all of the noise around her.  She jumped into Grandpa's arms, then back into Grandma's lap.  She gave kisses to everyone in sight and even said "Hi!" and "Bye" to the nurses as they came and went.  She practically dove from my arms into the bed to check out all of her stuffed animals and dolls.  She laid on her back in the middle of all of them and picked them up, one by one, introducing herself and getting to know them.

Erin, the cranio-mommy that we met a year ago, made our evening even better by stopping by with dinner.  The burgers were delicious, and the company was even better.  It was fun to share such a good night with someone that completely understands.

And then she wanted down...down to the floor.  She wanted to walk right out of the room.  But she still has I.V's in each foot, very very limited vision (and no peripheral vision) and a very large, very sore, very fragile head.

So we tried to tempt her with the some of the food that had been waiting for her all day.  She dug right into the mac and cheese.  And she drank some of her apple juice/pedialylte cocktail. I'm sure food tastes better when you can see it.

She was a very happy girl again. And so were we.  It was like we were reliving milestones.  It was a big deal.

She has spent most of the evening hanging out with dad, making up for lost time.  I not sure that this hospital room can handle all of this dancing.

 I think she's getting her groove back ;).

even the toughest girls get frightened

I thought Adeline's face couldn't get more swollen.  Like when your 8 months pregnant and think that there is no way your tight heavy belly could get any bigger.  But somehow it does. And it's even more uncomfortable and tight and heavy and itchy.  I don't think that the skin on Adeline's eyelids could stretch any more now. Her cheeks  feel so warm and taut, and unnatural.  And the smell instantly brought me back to her last surgery.  (Blog Entry Friday, December 31, 2010)  But the swelling is even worse this time.  Please God, let this be the worst.

We were transferred out of the PICU around 6 last night.  We were ready.  She was tired of the constant monitoring and assessments.  The room we are in now is more comfortable for all of us.  And we have our own bathroom.  The PICU staff probably discussed how much I needed a shower - I was still wearing the clothes I came in - and requested orders for the transfer.

Grandma and Grandpa Matthes and Nile visited for most of the day yesterday.  It was so nice to see them and get a little help.  And Adeline loved to cuddle in grandma's arms.  Nile would ask anyone that even peeked their head through the door, "What are you doing to do to her?"  He and Grandpa passed the time in the lobby and cafeteria (Nile can turn any situation into a game and contest). Nile had a really hard time leaving. My appreciation for my parents is growing even more.

They replaced the crib with a bed last night so that Adeline and I could both sleep while I held her.  The really really really great nurse and I attempted at least 6 times to slowly, carefully, quietly transfer her from my arms to the bed.  But even though we both held our breath for record time she would startle and wake up and cry and flip and even stand up.  With I.V.'s in both feet.  She would somehow figure out how to lift her heavy, hurting head up and then with one huge push she would be on her feet in the middle of the crib.  So they had me sign a waiver, rolled a hospital bed into the middle of the room and helped me shimmy my way into the bed.  It was so much like being in the O.B. unit 18 months ago when she came into this world.  We lay chest to chest, feeling each other's heartbeat.  She'd start crying and squirm and I'd pat her butt.  But this time she is 25 lbs.  My arms still ache as I type.  But I loved every minute of it, and even got a couple of hours of sleep. She has been held for over 24 hours now - the only break was when she was placed in her crib on her tummy.  She loves that, but of course, the surgeons don't.  I know that this will pass and she deserves my undivided attention. And my arms can use a work out.

She still fights and cries when the nurses are doing vitals (or when they are getting blood work, of course). I think that since she can't see what they are doing she is afraid they are going to hurt her.  Or even take her away from us.  She yells, "Mom, mom, mom, mom!" Even though I'm holding her and singing in her ear.  But everyone understands.  It's scary.

Dr. Miller came in this morning and removed the bandages and drain.  Besides being bald, gigantic from the swelling, and leaking - it looks pretty good.  Again Adeline sat quietly and still while Dr. Miller messed with the most painful part of her body.  Maybe he should come in and perform her vitals!  He's happy with it, but said she's "one that just likes to swell a lot".  So we will stay until tomorrow or Monday.

They are trying to wean her off of the morphine so she will be more ready to leave if we do go tomorrow.  I hate to see her suffer, but I understand. She can still have Lortab.  Aaron took her for a walk around the unit.  She is quite the site - I can't help but wonder what other parents think.

She has been addicted to her pink spotted blankie since I can remember.  Nothing else matches up and she won't sleep without it. It is impossible to wash it, and once I even drove the hour back to Sioux City from Sheldon in the middle of the night because I had forgotten it and she couldn't fall asleep with out it.  But now she is sleeping comfortably in Aaron's lap with a warm, soft cuddly blankie from Cranio Care Bears.  Soaking up the love!  Almost as good as morphine!