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?

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.

  

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".

http://www.averysangels.net/Averys_Angels/Welcome.html

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.

progress

The work week has flown by. Grandma Hot Dog is leaving tomorrow morning...seems like she just arrived. It's been wonderful not having to worry about Adeline during the day this whole week. For Adeline, it's been a week of lots and lots of cuddling and holding and chatting and playing and singing. I'm glad that she and Adeline were able to spend so much time together.   I know Nile is not ready for her to leave. She still has sooo much to learn..."So, Grandma, what do you want me to teach you tonight?"  It's also been a week of watching Star Wars, playing Wii, Candyland, puzzles, reading books. And she does it all with a smile.  I'm sure she is ready to head back and enjoy her quiet home.  What a way to spend your first week of retirement!

Even thought I didn't have to worry about Adeline while I was at work, I still missed her A LOT!  Now I know why so many mommies take the the whole recovery time off - not just to take care of their babies, but to take care of themselves!  But I am grateful that Aaron and I have such wonderful parents that are willing, and wanting, to help us out.  And I'm thankful that I have a good job to go to everyday.

Adeline had her first follow up appointment with her plastic surgeon, Dr. Miller, today in Omaha.  It went well - everything is looking like it should.  The bumps in the back of her head that we thought were rivets or screws are actually corners of reconstructed skull.  Dr. Miller drew a picture of what her skull originally looked like and where they made cuts and rearranged and reshaped the skull.  It made much more sense now that I had the finished product playing in my lap.  Her "flat top" is really a big empty space.  Yikes!  She went from having  no soft spot to a giant one - he says this will fill in with time.  Her hair is growing in so fast.  With the flat top and high and tight "hair cut" she looks like a drill sergeant.  It's exciting to guess what color her hair will be.  A beautician recently told me me that Asian parents often shave their baby's hair so that it grows back thicker.  Well, it works! This is one plus to the whole situation!  Adeline has a follow-up appointment with Dr. Puccioni, her neurosurgeon on Monday.  If she continues to do well, and Dr. Puccioni agrees, she will be able to go back to daycare a week from Monday. Amazing.

It was a pretty interesting wait in the lobby of "Village Pointe Aesthetic Surgery".  You can get your eyelashes permed for a mere $50.  It will make your eyes look wider for up to 4-6 weeks.  As we (Aaron, Cecilia, Adeline, Nile, and I) were sitting in their not-so-comfy-but-beautiful-and-modern leather chairs I was thinking, there is NOTHING for a 4 year old boy to do to pass the time in this office.  An 18 year old boy (or my 34 year old husband) wouldn't need a thing - there was plenty to look at. But after the short visit with Dr. Miller was over, Aaron and I came back out to the lobby to see that Nile would prove me wrong.  He was sprawled out sideways in one of the white leather chairs (wearing his red fireman rain boots, "talking" Spiderman shirt, and horrible stocking hat hair) having a heart-to-heart with one of the pretty 40-something (or maybe 50-something, Dr. Miller is good) year old patients.  They were discussing video games.  And somehow, with his Nile "magic", he had her talking about her ex-husband.  As we were approaching she was telling him, "Yeah, my son's dad likes to play lots of 'games', but I'm pretty sure Mario Kart isn't one of them."  Maybe Nile will be a Dr. Miller some day.  That would be okay with me - I've been told my eyelashes are pretty wild!

After the appointment Adeline finally got to meet her soulmate, Braydon.  Braydon had the same CVR surgery for Sagittal stenosis - with the same surgeons - just a week after Adeline.  When I scooted next to Erin, Brayon's mommy, so we could get a picture of us with our Cranio-Babies in our laps, Adeline immediately reached over and began exploring Braydon's head and incision with her little fingers.  And he let her.  They will have a bond for life.

I must be getting better too.  Adeline left the house with a (very cute!) hat on her head, but I didn't put it back on after her exam.  While I was walking around Toys-r-us with her in my arms, it took 3 different womens' second looks before I remembered that my beautiful baby girl had a big brown incision across the top of her bald head.  And I didn't care.  It made me feel really good.  And proud.  We are both tough girls.

the world is full of amazing people

Things have been going pretty well lately. Normally I would be feeling anxious about having to get up to go back to work in about 6 hours, but I feel so blessed lately that nothing seems to get me down.  Hopefully the feeling will last past Monday, but if it doesn't, it was a good ride.

The Knights of Columbus held their benefit breakfast for Adeline today.  I am embarrassed to admit that my stomach was in knots over it yesterday.  I even googled "how you should feel when someone is throwing a benefit for your sick child".  I didn't get any results...I'll have to enter my own sometime.  All of the generosity we have been experiencing has raised feelings and emotions that I can't even describe.  I have never been very good at accepting help.  I love to give it, and I love the feeling I get when someone accepts it, but for some reason it's hard for me to accept.  But when we walked into the gym and saw all of the familiar (and not so familiar) faces there...family and friends that had traveled from Sheldon and beyond, friends and coworkers, parishioners...it was like my heart just opened for me and I was able to take it all in.  And it felt good.  Obviously no one would ever want to experience having a sick child, but God is using the love and support of so many people to lift us up and carry us through this journey.  I can't wait tell Adeline about everything everyone has done for her and for us.  And to teach her early in life that through God and through the love that God expresses through his people, anything is possible.  I have always been taught that, but now we have lived it.
The world is full of amazing people.

I had better go back to work.  Adeline is getting pretty spoiled.  We started her on a 12 step program to stop the Lortab - and she has succeeded.  We are down to Tylenol and supplemental Iron. At first, I gave her the "normal" dose of Tylenol that a baby her age would get and she was just miserable.  I felt bad when I looked at her discharge instructions and found that she was supposed to get almost twice that.   Now, for the most part, she is able to find relief from pain as long as we keep on top of the Tylenol. She is beginning to show signs of separation anxiety, which is normal for babies her age, but also normal for children that have experienced medical trauma. Grandma Hot Dog arrived yesterday from Davenport.  She will be taking care of Adeline this week.  My mom plans on taking care of her the following week.  Grandma Hot Dog and my mom have already discussed their plan of care, which involves lots of loving and holding and cuddling (there is no better medicine!)  - but which also means she will be even more spoiled.  Joann will have to have her own 12 step program for Adeline when she returns to daycare.

Adeline is still being very smart about her head.  She still gets upset when I have her sit up on her own, and gets very upset when she forgets to be cautious and rolls to her tummy.  She will not roll back to her back now - she cries and waits for someone to help her.  I know it will come with time.  And we have lots of time.

I have had a few people tell me stories about family members who were diagnosed with craniosynostosis years ago.  It's amazing how the surgery and treatment has progressed, even in the last 15 years.  It's funny to me that with success story, there is also a little "quirk". Like an eye twitch, or not being able to look up (which is common), or still having an oddly shaped head.  But they all kid about it...and I know that we will do the same.
The woman that has touched me the most so far though was a grandma that came up to me today and asked me how I knew something was wrong.  I told her I just knew.  It was like an instinct.  Even though many people thought it wasn't a big deal, I knew there was a problem.  She said her 6 month old grandson has a very small head and is also very fussy.  She said the pediatrician thinks it's nothing, but her daughter and herself feel differently.  I hope they will follow their gut and call the Craniofacial clinic.  If it is nothing, great!  They can find relief in knowing he will be okay and they did what they could to help him.  But if it is something, the surgeons will probably be able to fix it.
And this is what I want to do now...Pay it forward.  Take all of the support and generosity we have experienced and help other people.  I can take my love to help others to a whole new level.

adeline's (really long!) story in pictures

Another free slideshow by Smilebox

"She's not sick. She's just getting better."

"She's not sick.  She's just getting better."
Again, I couldn't disagree with Nile.
He wants her to go to daycare so bad...I'm sure to show her cool new "owie" to all of his friends.  On Monday, before Aaron took him to Joann's, Nile told me, "But mom, they're all gonna tell me 'Where's your baby sister? And where'd Adeline go?' I should just bring her wif me."
One minute he is bawling or telling me his hair, or toe, or armpit really hurts - to get my attention, and the next he is begging to show the world how proud he is of her.

Aaron went back to work on Tuesday.  I wish he could have stayed home longer.  The world doesn't stop.  (Although it truly felt like it did when we were in the hospital.)

She rolled over for the first time (since her insane post-op night when flipped circles for 12 hours) on Tuesday.  She was on her back playing and must have gotten bored and brave, so she looked from side to side, saw nothing in her way, and decided to give it a go.  Just like riding a bike.  She flipped to her tummy, pushed her head up and looked around.  Then she wiggled her butt and started scooching backwards, just like she loved to do before surgery. She picked up from where she left off.  Of course, I grabbed my camera and started video-ing it.  So now we will have pictures and videos from her "firsts" in her life, and her "firsts" after surgery.  Perfect for a camera/scrapbooking addict like me!  Rolling back to her back wasn't as photo-worthy.  Even though she barely touched her head to the rug, it must have hurt and scared her.  She hasn't tried since.  I hope her fears (as well as the pain) dissolve soon.  She won't even sit up on her own and play, unless you are right by her.  She loves to sit up in her bumbo seat, or in her chair, where her head is safe.  But her favorite place is my lap.  She is a lot easier to carry around lately since she has lost some of her "tank".  Thank God she had it to begin with.

I made her post-op appointments with Dr. Miller's and Dr. Puccioni's office. She is now a post-plastic surgery patient. I am not looking forward to sitting in the waiting room of Village Pointe Aesthetic Surgery with my baby girl.  The ladies answering the phone have just enough of a "valley girl" accent to give me flash backs of junior high.  But I'm also proud of my beautiful baby girl and extremely grateful that this surgery won't only save her life, but save her from some of the ridicule and resulting low self-confidence that she will naturally experience anyway. So I have to buck up embrace my own inner beauty.  My kids teach me so much.

My dad visited yesterday and gave me a much needed break to go to lunch with Aaron.  It was like a breath of fresh air - well, it was my first breath of fresh air since Sunday morning.  She had had a very bad night and morning, so no one slept.  She didn't want to eat, just cried a lot and wouldn't stay asleep.  It's so hard to know what is pain, what is a result of being spoiled, and what is just normal 7 month old behavior.  But she slept well last night.  And that makes you forget the bad nights.

She reached up and rubbed her head for the first time last night.  She was looking at me while she ran her little fingers over the stitches.  She didn't do it long, and it must not have hurt. I think she was just curious.  Her eyes were asking me, "So is this what everyone is making a big deal about?"
Even though she does have extra needs right now, she is becoming quite the diva.  She won't let anyone put her pacifier in her mouth, it must be placed in her hand or within reach so that she can put it in her mouth herself.  And she won't nurse...she scowls and cries at me saying, "My food, preferably breast milk, must come easily and quickly out of a bottle.  I am not working for food any longer."  I'm sure it's just the beginning.

The Christmas decorations aren't begging to be taken down yet - the glow of the Christmas tree continues to provide the calm and peacefulness it does during the holiday season. Or at least that's what I'm telling myself - it could just be laziness. I'm finding myself not wanting to deal with any other "stressor" life has to offer.  At least until I have to go back to work.
It's nice being able to spend every evening at home together.  Nile has been entertaining us with his magic shows.  Of all of the new toys he had to choose from to bring to his first post-holiday show and tell at preschool, he chose his magic wand.  He said he really wanted to make Elle (a super cute classmate) disappear, but he wasn't that good...yet.

God doesn't seem to be interested in magic wands lately.  I get the feeling He wants me to fully experience what He has planned.  And I'm thankful for that.