we're set

We're set. Adeline Cecilia will undergo Cranial Vault Remodeling at the Children's Hospital and Medical Center in Omaha, NE on Wednesday, December 29.  Wow.
I've spent the last few days on the phone setting up pre-op appointments and making arrangements for our stay in Omaha.
I think I'm ready.
There is nothing more amazing, beautiful, self-fulfilling (insert any positive adjective or feeling) than bringing a baby into the world.  And everyday with Adeline is a blessing.  Despite the possiblity of intercranial pressure and pain, her development seems to be right on track. Nile loves playing with her and "teaching" her what he thinks she needs to know by now - and she loves him. She's a super sweet, chubby, otherwise healthy bundle of joy. "Things" could be so much worse, I don't even allow myself to imagine. 
But there has been this overshadowing anxiety through it all.  The last four months have been full of what-ifs and waiting; waiting between her 2 month and 4 month well baby visit to see if the shape of her head improved, waiting to get an appointment set up at the Craniofacial Clinic and then waiting for the appointment at the Craniofacial Clinic (which are only scheduled 1 day each month), waiting for letters/scans/reports to be sent to the insurance company for approval, (a very short period of) waiting for the insurance company to approve the surgery, waiting for the scheduling coordinators to get the surgery date arranged. 
I can definitely handle waiting this next week and a half.  In fact, I'm grateful for it - it's a perfect amount of time.  We will definitely miss spending Christmas with the Laakes -we have decided not to travel to reduce the chance of Adeline catching a bug.  But we will enjoy being at our home for Christmas for the first time since starting a family.  (I'll have to text Santa directions to our house.) We are being forced to slow down and spend time together.  God has blessed me with a deeper feeling of gratitude than I have ever felt before.

waiting is the hardest part

I finally talked to Dr. Miller's schedule coordinator today.  Nothing is scheduled, but I feel confident that they are working on it.  I do understand that it's not something that is easily coordinated, but it seems like it's taking soooo long!  I tried not to get too annoyed as I was placed on hold, listening to all of the procedures that the plastic surgeons had available...they do offer a 'dreams list'..."For that guy that just can't get it right, you can select the things you'd like for him to consider when choosing a gift package." I did not realize all that a plastic surgery center has to offer. Made me feel a little self conscious, even over the phone.  Infant Cranial Vault Remodeling was not mentioned in the recording.  Guess that's not on many Christmas lists.

The scheduler promises to call when she can get something worked out - within a couple of days.

I decided to get a feel for how Nile was doing with the whole situation.  He hasn't shown many signs of being affected by it.  He is starved for attention at times, but that has been the case since Adeline was born. It seems he is constantly touching or kissing her head, but I guess I am too.  And there has been a few occasions (even many months ago) where he will randomly tell someone, "There's nothing wrong with her head.  It's just fine.  It will fix all by itself." So I vaguely told him that Adeline's doctors are going to fix her head.  He barely looked up from his Leapster and said, "I know, her head's an oval and it's sposed to be a circle."  And that was it.  Plain and simple.  I couldn't have explained it better myself.

This week has been better than last.  Adeline still has too many episodes of unexplainable fussiness, but she has found her giggle again.  She wants to eat more than "normal" when she doesn't feel well (where would she get that from?!?) and I've asked the surgeons and her pediatrician about feeding her too often, but they all have told me that it's okay.  They like it that she has extra "tank" (yes, they used the word tank), it means more blood volume and faster, easier recovery.  She has been eating bananas, pears, peas and carrots.  And she loves mum mum crackers.  She makes the funniest noises while she eats - she really gets into it.  She's been "crawling" backwards, and rolling all over the house.  She doesn't like to lie on her back with her head on the floor, and I think it's cause it's so pointy in the back.  It just doesn't look comfortable.  But she loves to bounce in her jumper.  And Pete the cat continues to be the most interesting creature in her world.  EVERYTHING stops when Pete is in view.  He's gonna be in trouble when she becomes mobile.

and ONE GIANT LEAP!!!

The insurance company has approved Adeline's surgery!!!
 "Yeah, yeah, God i-is great.  Yeah, yeah, God i-is good!" was playing over and over in my head all day! (I didn't allow the rest of the lyrics to surface.)

Yesterday was a rollercoaster of emotions - the kind ladies that answered the phone when I called the insurance company could not find ANY documentation from Dr. Miller's office in their system.  They watched for it all day, and then finally called me at about 4:45 to say it never came through.  One of the ladies gave me a "special" fax number and phone number to give to Dr. Miller's office so that she could receive it directly.  So I called and gave it to them.

The insurance company called this morning to say that the documentation was there all along; it had not been scanned into the system like usual because it jumped to the caseworkers that handle rushed cases.  And they had immediately approved the surgery!  She had left a message on my phone, and luckily I was alone when I heard it, cause I cried like a baby...again!  I'm keeping the message to play over and over...I need to send those girls a card.  Here I was given the impression that the insurance issues would be the hardest to deal with and everyone has been wonderful, and much faster than ever anticipated.  It's a little rare for an employee of the healthcare industry to want to send an insurance company a card.  Maybe I should wait until it's all said and done...but not matter what happens - the ladies that we have been corresponding with deserve a big THANK YOU!

Now it's all in the hands of the schedule coordinator at the Craniofacial Clinic.  She has the (I'm sure very challenging) job of rounding up Dr. Puccioni, Dr. Miller and the rest of the team that is needed to perform a surgery that occurs at Children's about 60 times a year.  No one can tell us if it will be performed in 2010, but they will call us when it is on the schedule.

I took Adeline in to see Dr. Rehan yesterday afternoon.  Have I mentioned how awesome she is?  I called and talked to her nurse because Adeline was even fussier on Tuesday evening and had a miserable day at Joann's yesterday. I couldn't remember the last time she took a nap during the day and she barely ate at Joann's - which is extremely unusual.  Joann brought up the idea that maybe something else was wrong...were we overlooking something else, like an ear infection? That had never even occured to me. Dr. Rehan thought her ears looked clear, but the shape of her head makes it hard to see very far into her ear.  I have never witnessed a doctor express so much compassion for a patient. I know that Adeline is definitely not the sickest baby she has ever treated...but she makes me feel like Adeline is the most important baby she is seeing right now.  She put her face in her hands and said, "I really don't know what to do.  I know that she is in pain for some reason, and it's not teething.  This is more than teething.  But I don't think she has an ear infection.  I would normally never do this, but we have to get to the bottom of this.  I'm going to put her on an antibiotic. If she feels better in a couple of days we will know it was just an infection.  If not, we will know it is something more.  And why on earth are we still waiting for surgery?"  She also had us start giving Adeline Tylenol or Ibuprofen throughout the day so that whatever is hurting her would be less likely to flare up.

Kris from the Craniofacial Clinic called Aaron today to give an update.  He told her about Adeline's appointment with Dr. Rehan, and Kris was going to call Dr. Puccioni's office to tell him. 

It was soooo good to see the sweet, happy Adeline back today.  She slept and ate well. Nile was so excited she wasn't crying all evening that he made her a tea party.  They sat and ate Mum Mum crackers together and sipped out of their princess cups. I am thinking it is the pain relievers more than the antibiotic right now, since she changed so fast.  But we will see how she does after a few days of the antibiotic, and then cut back on the pain relievers to see if she still needs them.

Now I am feeling a whole new set of emotions.  This is becoming even more real.  I certainly want Adeline to have the surgery, but I am terrified of what could happen during and after.  She is so beautiful and when she is feeling well she is the most fun, giggly and curious little baby ever.  I am scared of losing that.  I know "everything will be fine" and "Children's is the best" and I know she will be even more beautiful after the surgery.  But I'm still scared.  My dad always says, "Don't pray for what you want - pray that God will help you to handle whatever He has planned for you."  Well, this time I want what I want!!!

So now that she is our happy, content (and sleeping!) Adeline tonight, it's easy for me to want to put off the surgery.  But if the clinic calls and says they want to do it tomorrow, we will be there. 

baby steps

We finally got a call from Dr. Millers office today saying that all of the necessary paperwork has been submitted to our insurance company.  And it's marked "rush".  Not exactly sure what that means, but it sounds great!  I was completely calm and collected when Dr. Miller's assistant called. 
OK, I bawled like a baby.
Me: "Thank (sob) you (sob) so (sob) much (sob)!"
Claudia: No, problem! I knew it was important to you and Aaron so it was the first thing I gave to him to sign today."
Me: "I (sob) wish (sob) I (sob) could (sob) reach (sob) through (sob) the (sob) phone (sob) and (sob) give (sob) you (sob) a (sob) hug (sob)!
Yeah, I know how to handle my emotions.  I'm cool.
So now we will have to wait a couple of days while the caseworkers at the insurance company review the documentation.  We will give them a call tomorrow just to make sure they got everything - we're on a roll...it's hard to sit back and wait.

Adeline has been having episodes of inconsolable crying.  She arches her back, doesn't want to eat, and screams like I have never heard her scream before. I could blame it on teething...but it just feels like it is more than that. I give her infant ibuprofen and it seems to help. My mom witnessed it on Sunday and is convinced it isn't "normal" baby fussiness. Yesterday I shut all of the lights off and held her tight against me for a while and she calmed down.  She doesn't fall asleep, she just closes her eyes and looks up at me every few minutes.  It makes me feel better if I blame it on teething.
Joann says she was unhappy most of the afternoon today.  Same thing...she cries a lot and just won't fall asleep.  Joann just holds her too.  Neither of us can bare to let her "cry it out".  So if it is just teething she will be one spoiled little girl!

But when she laughs...oh, that is the most beautiful sound I have ever heard!  She smiles soooo big at her brother. And giggles and giggles.  And tonight Aaron was holding her as she cried and she stopped just for a second cause Pete the cat walked across their laps. We will have to train him to keep doing that.

And now we wait...

We have been calling the insurance company and the craniofacial clinic almost daily.  We initially thought that we were waiting for the insurance company to approve the surgery, but now we know that we are waiting for Dr. Miller's office to send the necessary paperwork, CT results, and a letter from him explaining medical necessity.  I am trying to be patient.

In the meantime we have been getting tons of prayers, love and support from family, friends and coworkers.
Our family and friends continue to call and send messages.  Just having someone to talk to and knowing so many are praying for us is priceless.  And the offers to help with taking care of Nile during the hospital stay and Adeline after she gets home help to lessen the stress.  We will try to make a plan when we get a surgery date.
My coworkers have been very patient with me (and my occasional breakdowns!), and that is just what I need right now. Many have offered to help expedite the insurance process. 
Aunt Mary has contacted Harkin and Culver's office for assistance in expediting the insurance process. We have received  requests for authorization from both offices.  She also just told me that she received a letter from Dave Loebsack that was labeled from "the Congress of the U.S."  Pretty cool, Aunt Mary!
It will be very beneficial after Dr. Miller submits his information.
Nile and Adeline's sitter, Joann (Jo Jo) has been very supportive and concerned during this entire journey.  She has admitted to spoiling Adeline a little more since the diagnosis.  And she is adamant about donating blood herself or having one of her family members donate for Adeline.  Dr. Puccioni advises against family members donating because Adeline's body is more likely to reject the blood or have an adverse reaction to it.  He assures us that an anonymous donation from the Red Cross is the best way to go.  But thanks, Joann. Your love for our children means the world to us.

Dr. Rehan's Call

Dr. Rehan called the next afternoon.  The first thing out of her mouth was, "Trish, how are you doing?". She couldn't believe the diagnosis. They had sent a consult letter and preliminary CT results already that day. I thanked her for catching it - I had talked to another mom who went through 3 doctors before her daughter was finally diagnosed at 11 months.  She told me that she wished she would have sent us sooner, but Adeline was only the second baby in all of her years as a pediatrician that actually had craniosynostosis.  I told her about the battle we might have with the insurance company and she said she would call and send letters, she would do whatever she could to help. It made me feel grateful that Adeline had such a wonderful pediatrician, but also made me realize how rare this condition was.  I didn't want to feel alone.
I joined craniokids.org, a online support group for those with loved ones who have craniosynostosis. So far the ladies I have met are amazing.  I feel so much more confident now that I can share my feelings and concerns and questions with other moms that have gone through or are going through the same journey. I just can't wait to be "on the other side."

The First Visit to the Craniofacial Clinic at Children's Hospital and Medical Center, Omaha NE

The day of the appointment finally arrived.  We drove down to Omaha and got there early.  We had a nice lunch and went to the clinic.  The clinic was amazing.  We received a pager, and when they were ready for us the pager blinked and a message appeared.  Everyone was very kind, they made us feel like Adeline was the only patient in the clinic that day. Dr. Miller, the craniofacial (plastic) surgeon, came in first.  He walked through the door, introduced himself (he had a cold) and immediately told us that Adeline would need surgery - He didn't even touch her head.  Aaron and I didn't look at each other the entire time Dr. Miller was in the office.  He was very straightforward.  He explained Adeline's condition and the entire surgical procedure.  We asked a lot of questions and he answered them patiently.  He told us how they would create and incision across Adeline's skull from ear to ear, like a wavy headband. He said they would remove the fused sagittal suture and also some other bone around the base of her skull. He would piece it back together with dissolvable plates and screws. It would take about 3 hours, she'd be in the ICU for 1-2 nights and then in the hospital for 3-4 more nights.  They would see her at the craniofacial clinic three weeks post-op and decide when she could return to daycare, usually within 4 weeks post-op. When we finally told him that we had no more questions he told us that he would dictate a letter to the insurance company and basically fight them to cover the surgery.  Insurance companies like to deny surgery for craniosynostosis because it requires both a pediatric neurosurgeon and a craniofacial (plastic) surgeon.  They try to claim that it is cosmetic surgery and is unnecessary.  We walked across the hall so that Dr. Miller could take pictures of her head. I anxiously laughed when he took out a Nikon SLR camera and snapped photos.  I thought he meant xrays.
Dr. Puccione came in about a half an hour after Dr. Miller left.  He came in, shook our hands, talked to Adeline a little and then told us she definitely required surgery.  He was charismatic and his compassion helped assured me that he wanted the best for Adeline. He felt her head and showed us parts of her skull that were abnormal.  I felt each part as he explained it.  He was surprised that she wasn't more fussy than what she was.  I told him that she had been more fussy in the past 6 weeks, and had been getting up at least once during the night, but we always blamed it on teething or having a cold. He said that he could tell that there is pressure on her brain, and it was might be causing headaches. She has frontal bossing - her forehead is starting to protrude due to the pressure from the brain.  Right now there is a good chance that mother nature will fix this herself, but if we do not do surgery soon there is a possibility that she will have to have a second surgery.  I think in some way my medical mindset overtook my motherly feelings.  She was my baby girl, but she was also now the most important patient I have ever cared for in my life.
We agreed to plan for Adeline to undergo The Dallas Remodeling Procedure. http://www.thecraniofacialcenter.org/synostoses_treatment.html
After a very detailed explanation and a lengthy question and answer session, Dr Puccione asked how we were feeling.  I told him that, honestly, we thought that we would walk out of the clinic with a plan to only use helmet therapy.  He apologized and said that he just assumed that we knew because her case was so straight forward.
When our meeting with Dr. Puccione was finished he sent us to the radiology department for a CT of Adeline's head.  She feel asleep before the CT tech brought us back for the scan.  She looked so sweet and vulnerable lying in the big camera.  She was an angel, the CT tech said she couldn't believe it went that smoothly.  She was pretty pessimistic when the clinic called her to do a CT of the head of a 5 1/2 month old without sedation, at 5 o'clock in the afternoon.  Being a Nuclear Medicine Technologist, I knew exactly what she meant.  But now I was on the other side. It was surreal that my daughter was undergoing a radiological exam.  I spent my pregnancy trying to minimize her exposure to radiation while I was at work and now in seconds she received many times more radiation then I did the entire time I was pregnant.