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!

Friday, December 9, 2011

Cheerios! Yummmmumumum!

Just because I can't see and my head weighs 30 lbs doesn't mean I can't have a Dance Party!!!

morphine is her new bff (and ours too!)

She slept 4 hours straight last night.  Which means that I slept for 4 hours straight last night. God is really good. (And so is the medical staff!) So far, no oxygen needed and no blood transfusion! She has color in her cheeks. The anesthesiologist used a "new" drug during surgery that they use in Europe - she says it might help the blood to clot better so there would be less blood loss during surgery.  Miller and Puccioni said they were pleasantly surprised about the lower amount of blood that she had lost, but wouldn't give credit to the medication.
Her left eye is swollen shut.  Her right eye follows the nurses and doctors with a glare - but it's just peeking out of the slit of her eyelid! Her archenemy is the stethoscope.  Out of all things...the thing that probably hurts the least makes her the most angry.  She sees it and her heart rate jumps to 200.  Every medical student and resident that has come in learns that quickly.  "Leave me the %$@* alone."  Sweet, sweet Adeline.
But her puppy Violet's lullabies calm her.

It is hard to see her when she is uncomfortable.  She moans and cries and tosses and turns.  We have taken turns holding her all morning.  This makes up for all of the times I have wanted to cuddle with her and she has better things to do.  I'm worth her time right now.

Morphine+Tylenol+Benadryl seem to be the cocktail that keeps her most comfortable.  She is sooo cute sitting up in daddy's lap with her big pink turban and swollen head.  Her chubby legs hanging out of her pink blankie - they are cute even with I.V. lines and coban that cover her feet and ankles. They just removed the arterial line and she loves to look at her hands and show me that it's gone. She keeps asking "What's this?" in her raspy voice.  She is acting a little goofy and loudly answering the PBS cartoon kids when they ask her questions through the T.V.  She's loving their positive reinforcement!

We should be able to move out of the PICU today - as long as a room becomes available.  I am looking forward to that - she would LOVE a wagon ride.
Grandma and Grandpa Matthes are on their way with Nile.  I can't wait to see what she does when she sees him.  I am also nervous about what he will have to say to the medical staff. They might transfer us out of here STAT once the two of them are together again.

Thursday, December 8, 2011

muuuuch better...

If you are ever feeling sorry for yourself or your family, take a trip to a children's hospital and sit in the lobby for a while.  It won't take long.  You'll get a swift smack across the face - there is ALWAYS someone that "has it worse".  I was passing time in the gift shop and a woman came in with a 18 month old boy.  Big brown eyes, curly brown hair.  In a special wheelchair.  On a portable ventilator-like machine.  Those big brown eyes lit up when the woman showed him a stuffed dog. And then he didn't want to let it go.  I said, "I bet it's hard to say no to him!" She said, "Yes, it is.  We all take turns spending time with him.  He's a special boy."  She was his respiratory therapist.  I don't know what his story is.  Or where his parents are.  But the respiratory therapist and I bought the dog for him.  He left kissing it.

Soon after, a couple approached me and asked if they could pray with me.  They asked why I was there.  (Aaron had gone for a little walk.)  He was a pastor from Council Bluffs.  We closed our eyes and he asked the Lord to guide the surgeons and watch over Adeline.  He asked that I be blessed with the peace that passes understanding.  I am not making this up.  God must have thought I needed another sign that He was there with us.

Dr. Miller and Dr. Puccioni walked into the lobby at about 11 to tell us that their work was done.  She did great.  They were very positive.  It's funny to see their personalities show through now that we know them better.  They went back and forth - almost finishing each others sentences as they described what they did.  They took the skull off of the front half of her head - down to and to the sides of the orbits (eye sockets) - but didn't "mess with" the orbits.  They flattened out her forehead and added plates to the temples to make them rounded.  Dr. Miller warned that the temples will now look "over-compensated", but Dr. Puccioni assured that it would look more normal as the plates dissolve.  And Dr. Puccioni added, "She really needs hair."
We were a little premature with our timing. Miller and Puccioni didn't mention the fact that they had a team of surgeons still in the operating room finishing things up.  They do the big stuff and the residents do the finishing work.  Again - just another day at the office.  The liaison came back about 45 minutes later to say they were just bringing Adeline to the recovery room to be extubated and observed for about 45 more minutes before she would be transferred to the PICU.  But things had gone very well.

Her recovery room nurse visited with us in the PICU lobby around 1.  She was pretty cool  She said "Everyone has warned me about how "spirited" your little princess is, but she was a complete angel for me.  I don't see it at all!"
We were finally escorted back to Adeline's PICU room soon after.  There is nothing more beautiful, breathtaking, moving than seeing your little girl resting peacefully after going through something like that. That is the gift that God gave us for being so patient with Him.  They had wrapped her head in the same bright pink bandages as before.  And her head is perfectly round.  She looks so much like Nile.  Aaron and I stood by the bed for a long time and just let it all sink in.

She has fought a fever and pain through the afternoon.  Dr. Puccioni had the nurses remove the foley catheter and that alone has made her more comfortable.  So far all lines have stayed in - thanks to being on top of pain meds and LOTS of coban bandages.  They have "hid" the drain on top of her head.  I'm hoping that keeping the drain in will lessen the swelling.  But I can see that her forehead and temples are beginning to swell and push against the bandages already.  We have had quite a few episodes of combativeness and pulling and tossing and turning, but she seems to calm down more easily than last time.  It is very evident that they are doing everything possible to make her comfortable and content.  Even though she is still much more agitated than most children get, and even though the neuro-team is still being very conservative with narcotics and meds due to the nature of the surgery, she is still doing much better than last time.  Prayers continue to be answered. The rule is that only one parent can stay over night, but the charge nurse told us she was working the night of Adeline's last stay and remembers it well. They are going let Aaron sleep on the couch of an empty room. Praise God.

We watched a couple of hours of Little Einsteins and Elmo...she has even tried to point and talk about Elmo.  She sounds like a chain-smoker.  The nurses were kidding around about her raspy voice and "stoner" gaze.  She's our Sweet (medicated) Adeline.

The nurses arranged all of the equipment and lines and transferred her carefully from the crib to my lap.  It felt so good - she was so warm and cuddly!  She fell asleep in my arms as I rocked her.  And just as every part of my body was falling asleep and becoming numb, she woke up and sat straight up.  Aaron and I switched places (with lots of help from the nurses again).  She drank some pedialyte - out of her favorite sippy cup with the straw, of course - and has been hanging out watching T.V.  Aaron is making her watch a really annoying show on the History Channel.

I think she just got him back though - she just threw up all over him.

i've got the peace that passes understanding down in my heart...

We have been waiting in the lobby.  It's been almost 2 hours since Adeline was brought back to the operating room. I argued with myself about when it was appropriate to get the computer out and start typing. Is it ridiculous that I sit here and write while my daughter is lying in a cold, bright, sterile operating room just a few rooms away? Of course I am worrying – I can still feel the itch of a cold sore trying to appear on my upper lip. Should I be praying? Or crying?

Well, I have discovered that this is my prayer.

We got a nice, bigger room at the Rainbow House last night. I almost felt guilty when we walked in! But it had plenty of room for the pack and play.
We gave Adeline a tubby with “adult” soap, as directed. No messing around with “no more tears”! This was a big girl bath.

I rocked her for as long as she would allow me to. I pressed my lips against her head, breathed in the Lever 2000 scent of her hair, and let the tears fall down my checks and onto hers. We all fell asleep to the lullaby of her little nighttime puppy, Violet.

She slept well. I picked her up from the pack and play this morning, threw a hat on her head, wrapped her in her blankie, and we put her right in the pickup. She was a little irritated that we disturbed her beauty rest but she didn't say much. Children's is just a couple of minutes away so she wasn't even quite a awake by the time we walked up to the registration desk.

Sweet Adeline wasn't very sweet while the nurses were doing the surgery preparation. I opted for the phlebotomist to do a finger stick to get the blood for the type and cross and panels. I think it was easier than holding her down for a venous draw, but she fought the whole time anyway. Heck, she started yelling at the nurse when she was getting her weight. We had to do the thing where they weighed both of us together and then I handed her off to Aaron so they could weigh me and subtract to figure it out. Listening to heart and lung sounds, measuring her height, head circumference, etc., were all just about as traumatic as the finger stick. She had visits and questions from at least a half dozen medical staff members. She didn't want anything to do with any of them - and wasn't afraid to let them know. But when Dr. Miller came in he was able to walk right up to her, feel her head, talk to her, and “tatto” the top of her head with a permanent marker without her even flinching. She's amazing.  Anesthesia spent a lot of time talking with us about how they would do things differently this time to try to prevent the horrific post-op night Adeline had last time.  Dr. Miller admitted that was the first and only time he has had a baby "do all of that". (Link to Blog entry regarding "all of that")

They gave her a dose of tylenol and versed (well, they had me give it to her – they had learned that lesson before even trying to). It was pretty obvious when the versed kicked in – sweet (medicated) Adeline was back. She giggled, let her paci hang halfway out of her mouth and her even her babbles began to slur. But she was content. The whole surgical department said a thank you prayer to for versed.

Even with all of the kind staff stopping by, making sure all of our questions were answered, giving encouraging words, it was (of course) still hard to let her go. She tried to cry, but the versed made that difficult. So she just tilted her head back and reached for anyone to pick her up. I wanted to...but a surgical nurse did it for me.
It's strange how you can feel so empty - but so heavy at the same time - when you are left alone in the pre-op room...forced to let go.

Within a couple of minutes we were escorted out to the surgical waiting room.  There the sickness in our stomachs slowly lessened a bit as we sat and held eachother.  I looked around and realized that she is one of at least a dozen children in that operating department at the same time.  We sat next to a couple trying to entertain their 4 year old son.  We had seen them earlier with their 15 month old daughter in the surgery department's play room.  They told me that they are from Kansas City, their daughter has a rare bone disorder - I don't remember the medical name - but I had heard of it. Brittle bone disease.  We have so much in common, it's creepy.  In less than 15 minutes God had sent me someone to remind me that we have it soooooo good.  

The liason came out after about an hour to say that everything started fine.  All of the lines went in nicely, the first incision went well.  They are all back there just doing what they do.  Another day at the office.

I can feel all of the prayers that are being said around the world for Adeline right now.  And although I get angry that she has to experience this I am grateful that God has allowed me to grow through Him.
Sitting here, even sick to my stomach, I know that God is providing me with the peace that passes understanding.  

Sunday, December 4, 2011

ready or not...

I am forcing myself not to enter freak-out mode.  Adeline's surgery is 4 days away.  I flinch at every sniffle or sneeze.  I want to bathe her in hand-sanitizer.  I know I was the same way before her first surgery and she did have a little cold when she went in.  I was terrified, but the anesthesiologists thought she was fine.  I obviously would never wish for them to perform surgery if she is ill, but it would be devastating to have to start from the top again.

Adeline opened an amazing care package sent by Cranio Care Bears, an organization dedicated spread awareness and provide support and compassion to families of children facing surgery for craniosynostosis.

I bawled thankful tears while she tore through the over-stuffed box, but she had a ball.  She even found M&M's...she was a very happy girl! (She still has scabs and bruises on the right side of her face from falling on the cement last Monday.  I guess she thought I needed more proof that she is tough!)

We spent Saturday afternoon doing Nile, Daddy and Mommy-only things.  We went to the movie "Puss in Boots".  Nile even got his own kids popcorn and drink.  And he sat in his dad's lap through the whole movie. We wanted to show him that he is still our very special boy.  And he deserves all of the attention in the world. It felt good.  Our wonderful neighbors watched Adeline.  It was Lauren's first time babysitting so (even though her mom was with her the whole time) she really enjoyed it.  And so did Adeline.  It was a win-win-win day.

Father Merlin performed The Anointing of the Sick this morning after mass.  Grandma and Grandpa Matthes, Great Grandma Jo Jo and Aunt Julie made a special trip to Sioux City to go to mass and be present during the sacrament.  Adeline squirmed and talked and "No, No, No!"-ed us during the entire mass - well, until Aaron took her out - but she quietly on my lap and listened to Father Merlin while he was praying over her and anointing her forehead with the oil.  It was almost like she knew it was pretty special.  And she allowed us to feel the peace and comfort that only God can provide.  It felt really good.

Grandma and Grandpa stayed and we all went to Disney Live! presents Three Classic Fairy Tales.  My heart was very happy cuddling with my little princess as she watched the characters sing and dance across the stage. I don't think I have ever seen her concentrate on something for so long.  Her eyes were WIDE open and excited.  Until about 1/3 of the way through and she had had enough - then she was more interested in climbing the stairs of the Orpheum lobby.  It is a very pretty lobby.

I have made sure she has barrettes in her hair whenever possible.  And her head has received a record number of kisses.

The insurance company sent us letters approving the surgery and hospitalization.  The Rainbow House is holding a room for us.  My parents will pick Nile up from school on Wednesday. Our dog, Ceda, is staying with Tim and Heather.  My FMLA paperwork has been approved.  "Let's Rock Elmo" has been practicing his show. Her Pre-Op appointment with Dr. Rehan is tomorrow.

Prayers are flowing.

We are ready.

Friday, November 11, 2011

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.

Wednesday, October 26, 2011

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.

Wednesday, October 19, 2011

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.

Thursday, June 23, 2011

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.

Tuesday, April 5, 2011

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.

--Reinhold Niebuhr
(thanks dad!)

Monday, April 4, 2011

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 so it can be seen by anyone.

Godspeed baby girl.

Sunday, March 13, 2011

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.

Monday, February 21, 2011

and she's off!

Adeline started crawling tonight! Nothing's gonna stop her now!

She has no idea how fragile her head is...which makes me very happy, but also very nervous!  I can just hear her, "Mom, are you gonna let a little surgery stop me from conquering the world?" 
Can I wrap the world in bubble wrap?

Thursday, February 10, 2011

everything is all right.

Time has been flying.  It always seems to when life is going well.  Nothing exciting...just easy. 

The first week back to daycare went better than I expected.  Joann gave the kids a lecture about Adeline's "owie" and told them how important it was to basically stay away from her.  I think they were just scared of Adeline at first...and maybe that's okay.  Poor kids! Three year old Logan kept saying, "Someone's gotta bring that baby to the hospital!"  Joann would try to explain that she was already at the hospital and was now getting better, but he would just shake his head and his eyes would open wide, "JoJo, you GOTTA bring that baby to the hospital! She's got a BIG owie!"  I think she's pretty much old news now.  I wonder if any of the kids will even remember it.

She's pretty much back to a routine now.  She's still spoiled, but she is so happy! and curious!  She is really trying to crawl.  She rocks back and forth on her hands and knees and somehow gets where she wants to go.  Not exactly gracefully, but she gets there.  If she sees something, she goes for it - much more brave and intense than her brother ever was. When she gets to what she wants, she picks it up and studies it very seriously.  And then shoves it in her mouth.  Her favorite thing is a plastic tea party set.  It keeps her entertained forever!  Every piece is studied and tasted. So I love it too!
She is sitting up well on her own and doesn't seem to be scared of falling anymore. (I still am.)
She loves her Johnny Jumper.  The plates and screws in her head must but in there tight 'cause she sure has been testing them.  I had a hard time watching her jump so excitedly at first, but I just love seeing her so happy. She claps and screams and laughs! I think it'd give my grandma a nervous breakdown if she saw her.
She is sleeping better than she had in months.  I'm so glad that we got up with her in the middle of the night those last couple months before surgery.  She must have been miserable.  And she naps so much better too. Now she is content and just wants her sleep! Thank God!
She loves to clap...She claps when she hears music, when she's excited, or just feels like clapping. She loves to patty-cake with Nile, and he thinks it is so cool!  He's realizing that she is a little person. And he is so proud of her. After all, she's gotta be smart, she laughs at all of his jokes. I watched her in her crib the other day, clapping her hand to her bare foot, just laughing and laughing!
She is so loud! She says Dadadadadadada all of the time. I try to get her to say "Ma Ma" again, but she just looks and me and smiles and says "Dadadadadadada".  It's now a game. 
And nothing's better than a sweet, sloppy Adeline kiss.
Her 3rd tooth finally poked through tonight - on top.  She had been working on it for months.

I don't think Aaron (or I) will ever be able to hear the "pop" when we open a can of refrigerated dough, or a bag of pretzels, or a bottle of soda without thinking of the surgeons describing Adeline's head "pop" ("like a bag of chips") and her brain relax during surgery.  It's a little gross...and a little hard to accept.

The incision is becoming less noticeable. The scabs are almost entirely gone.  I catch myself just staring at it. I'm amazed at all that has just happened. Adeline's hair is lighter and thinner than I thought it was going to be, so it may be a while until the scar disappears under her hair.  And by that time I will probably be ready for it to vanish.  But now I want to see it.  I want to see that my strong baby girl has overcome more in her 8 short months of life than I may ever face in my lifetime. I am so proud of her...and she has no idea how amazing she is.  I just can't even explain the feeling I get when I watch someone wince at the sight of her scar - Adeline will smile at them until they smile back at her.  And then she jumps up and down, or claps her hands, and laughs to let them know that she is a happy, healthy girl.  Everything is all right.

Sunday, January 23, 2011

watch out world, here she comes!

Adeline had a follow up appointment with Dr. Puccioni's office on Monday.  His P.A., Kristin, saw her.  Everything continues to look good.  She is neurologically perfect. It seems that since the surgery, whenever we speak to the doctors, the severity and risks of craniosynostosis and the cranial vault remodeling surgery increase.  It is definitely better that I was clueless about most of it before.  I can’t imagine how sick and worried I would have been.  Kristin explained how large and delicate the sagittal sinus (the main blood vessel that drains blood from the brain) is and how easily it can be nicked or cut open during the removal of the skull.  And it’s not good when that happens.  But Adeline’s surgery went smoothly -so there was no need for worry.  If Adeline does have to have another surgery to repair the front part of her skull, the blood vessels there aren’t as large and delicate, so the risks aren’t as great. 
I’ve also learned that no one is certain what causes craniosynostosis.  Many think the brain sends signals to the skull via the dura mater (a thick membrane that covers the brain and spinal cord) that tells the skull to continue to grow or to stop growing. For some reason, Adeline’s dura mater told the sagittal suture the brain was done growing in that direction - so the suture fused.  We just have to hope and pray that the skull and brain grow normally now since the fused suture has been removed and the skull is remodeled to accommodate growth.  We will travel back to Omaha a couple of times in April for 3 month follow ups with Dr. Miller and Dr. Puccioni. I’m just going to try to take it one appointment at a time and not worry about what could be next.

Adeline received a beautiful headband from "Avery's Angels".
Avery’s Angel Network is a charitable program providing handmade flower headbands for baby girls with craniosyostosis. The headband helps cover the ear-to-ear scar left from surgery and gives them some pampering during their time of healing. This program also hopes to promote awareness (and acceptance) of Craniosynostosis because early diagnosis is crucial to providing adequate treatment.  I feel so proud and blessed to see Adeline in her headband.  Avery's Angels is a gift itself. I will send them a summary of Adeline's story so she can officially become one of "Avery's Angels".

Grayma (Matthes) spent the week with us, and Graypa visited a lot.  Adeline's last week of staying home.  I'm not sure who enjoyed it more...Adeline or Nile or Grayma.  Grayma's assignment for the week was to de-spoil the princess.  She goes back to daycare tomorrow, and she needs to fit in with the other kids again. And I don't want Jo Jo shipping her home in a box. So Grayma spent the week at a 3 foot distance from Adeline.  No kissing, no cuddling, no rocking or dancing.  Something tells me that Grayma cheated a little, but Adeline does seem to be a little more independent again, and Grayma was actually able to clean the house up a little.  Adeline is now sleeping well during the night and taking (short) naps throughout the day.  She will play on her back - after a little crying and pleading to be picked up - but now I think the crying is more to do with being spoiled than with pain.  She grabs for everything - she's pretty intense - when she wants something she goes for it! And the grandmas have fattened her back up!  I will never be able to repay them for their help and love these past few weeks, but I hope that knowing their hours of  nurturing the way only a grandma can will always be a very special part of Adeline's life.
She is so happy. And so lovey. And so LOUD! I am embarrassed to admit that when I do take her out it is easier to put a hat on or hood up just in case someone would give a look or say something that would hurt my feelings.  But mommy better forget trying not to draw attention to ourselves.  She rips the hats off and "sings" at the top of her lungs, she wants the world to know she's doing GREAT.  

Our lives have been changed by craniosynostosis. Although its been rough, we've all survived and are (happily) thriving. After Adeline is finished growing and her brain and skull have developed completely, we will be done. Although I do not like leaving my kids to go to work in the morning, I am so grateful I can leave them. I'm not waiting in the hospital as my baby endures a round of chemotherapy or at home taking care of a sick child because no one else can or wants to handle it.  We can pretty much go on with our lives.
Since life is supposed to be made up of challenges to overcome I probably have quite a few more ahead of me to conquer. Crap. That's scary. Its like, we've hot this nailed, what on earth is next, and how is God going to present the tools needed to handle that. Am I going to have the strength?  What if one of my kids gets cancer. I couldn't survive that. I have always had a (normal) back-burner fear of childhood illness and now I have had a taste of it. And I'm left with a deeper fear of what could happen.
When Nile was a newborn and I was a first-time parent of a baby with colic I thought, " if parents really told other perspective parents what taking care of a newborn was really like (and they were able to comprehend) no one would have kids".  But you get through it and you love that baby sooooo much more than you could have ever imagined.  And it's all worth it.
If I let my mind have its way, even everyday tasks and responsibilities can become a little more intimidating. I am more sensitive to losing control of the easy stuff. I just need to lasso up my thoughts and focus on the gifts and rewards instead.  God has a plan.

Aaron and I are blessed to want to support each other throughout any situation. We make a pretty good team.  We have been able to find humor in almost every circumstance, and if no humor can be found, we can hold each other tight and storm through.

Maybe that's why God gives us so many distractions. Nile's innocence warms my heart.  His insight into the life of a four year-old boy amazes me every day. And the funny things he does and says are the perfect fuel to keep us all moving forward.
Since the light sabers have been put up in the garage "for a really long time now! Geesh!" Nile can make a light saber out of pretty much anything.  (The best part is watching him try to keep them in his holster - i.e. waist band.  I promise all cooking utensils are sanitized in the dish washer after a duel.)  And his advise on how I can beat him in a light saber fight is almost tempting enough to accept his challenges ("Mom, you [do this or say this], and then I'll [do this]."  He has it all planned out.)  But Aaron is getting a little annoyed with getting randomly poked with various household objects.
I can judge how long I haven't payed attention to Nile by the number of wardrobe changes he's had. Football uniform to basketball uniform to cowboy to football/basketball mix...with cowboy boots of course.  And then the 3 different pairs of pajamas.  All mixed and matched.  His room looks like a teenager's.
And whenever he gets in trouble, he always finds a way to convince us that it was a learning experience for him, "Mom, I am really sorry.  It was my fault, but I didn't mean to do it.  And I know that I won't ever do it again now." and "Making myself camouflaged with markers does give me a rash! I promise I won't do it next time."

I just can't imagine the team that Nile and Adeline will make together.