Friday, December 31, 2010

we have every reason to celebrate

Well, they were right.  Her face and head are tremendously swollen.  Her eyes are so swollen shut that her long eyelashes are hidden between the lids.  The right eye started swelling shut last night, and she woke up not being able to see out of either matter how hard she tried.  She was scared at first, moving her head back and forth, not knowing why she couldn't see the world around her.  We held her and comforted her and sang to her and fed her, and then she went back to sleep.  I expected her to be much more irritated with the situation, but she handled it very well. She slept for most of the day...something she never does.  I suppose she figured if she couldn't see what was going on she might as well sleep the time away.

Dr.Miller came in this morning and took her bandages off.  It's really a clean incision.  Small stitches in a large zig-zag line across the top of her head from one ear to the other.  So now I am grateful that he spends most of his work day doing nose jobs and boob jobs...he knows how to make things look good.  He said that we will see many lumps and indentations once the swelling goes down...and not to be alarmed when we do. Her little body will fill them in over time.   Aaron asked how he decides what her head should look like.  Dr. Miller said that he basically makes every sagittal stenosis head the same shape.  It works best with the bones that he has to work with, it accommodates brain growth, and it looks good.  So some day she might run into another craniokid that has exactly the same "Miller" model skull.  Her head is HUGE right now.  It looks like it weighs 10 pounds.  Judging from how hard it seems to be for Adeline to hold it up, it must be very heavy.  And uncomfortable. And itchy.  But she still looks soooo beautiful to me!  Our little sumo wrestler! I am sooooo grateful that I took the picture of her right when she got out of the O.R, before the swelling and bruising started.  Because I know that over time she will return to that comfortable, beautiful, sweet baby.

She doesn't babble really loud like usual, but instead makes little puppy noises that just melt your heart. She shakes and chews on her toys, even if she can't see them. She hasn't smiled yet, but I know it will come. I can't wait! 
A mommy of another "craniokid" that I met on an on-line support group stopped by to visit.  It is really neat that we have found someone so close going through the same thing at the same time.  Her son's surgery is scheduled for this Tuesday with Dr. Miller and Dr. Puccioni.  She was very anxious to get his surgery done sooner (they have been waiting since September), but I kid her that Adeline's surgery was just one more that the doctors have under their belt before they perform her son's.  It was great to meet her in person, she has been very kind and helpful to me, so I hope that I can return the favor.  She was telling me how it was hard to read my recent blog posts.  I don't know what would be better...being pretty much clueless (and not as worried) about what we were getting ourselves into post-op like we were, or knowing everything that could go wrong and being somewhat prepared.  I should have written a disclaimer before publishing those posts.

What a difference a day makes.  She had her last dose of I.V. antibiotics at 4:15 this afternoon.  They are keeping the I.V. in just in case, but besides that the lines that she hadn't already discontinued herself have been removed.  Other than a little fever and eating much less than what she normally does (she's keeping most of it down), from a medical standpoint she is in really good condition.  If the swelling starts to go down and no problems arise over night, she may be discharged TOMORROW!  YIKES! I was just getting used to labeling breast milk, weighing diapers, explaining what each poop looks like. I have been comforted by being able to look up at a monitor to make sure everything is O.K. and having someone come in when something doesn't look perfect or if I have a question.
I was talking to the nurse about how crazy it is that they would discharge Adeline so early and she told me that she would feel the same way if she was in the same situation. But there is nothing else that they need to do that we couldn't do at home.  She will be sent home with oral pain medication and oral antibiotics.  She just needs a clean, safe place to heal. And time and patience and and lots and lots of love.  I have that.  I just wish I also had a nurse call button.

Adeline gave the night shift staff a bottle of sparkling grape juice to help ring in the new year.  They certainly deserve it.  Everyone continues to be amazing.

We probably won't be awake at midnight this year...unless she wakes up to eat or needs more pain meds.  But we have every reason to celebrate.  When I look over at her sleeping comfortably in the middle of that big hospital crib, squeezing her blankie against her beautiful round face, the feeling I get is better than anything watching fireworks or drinking champagne can give me. It's gonna be a happy new year.

Thursday, December 30, 2010

Brave Ma Ma

She said "Ma Ma" today for the very first time.  She was chewing me out, and she only said it one time, but she said it.  It was a gift from God.  I know it.

The day started horribly. Yesterday and today actually ran into each other. The little turkey made herself famous in the PICU and then on the 5th/Intermediate floor when she was transferred this afternoon.  She managed to pull out everything the doctors and nurses had attached to her little body, despite being observed almost constantly.  The neurosurgeon was even impressed when he was called in because she had managed to pull the drain out of her head.  By the time we were transferred to the Intermediate Care floor she only had EKG leads, an O2 sensor, the nasal cannula for O2 and one I.V.  She helped the doctors and nurses discontinue her arterial line, an I.V., her Foley catheter, wound drain, and nasal cannula...but she kept the I.V. for morphine and antibiotics.  She's a smart little girl.  They did have to devise a way to keep the O2 sensor on (her foot) and they taped and covered the remaining I.V. but she convinced them that everything else could go.
Adeline was finally able to relax and sleep at about noon.  It was like a switch had gone off and she settled down for a while.  So then we could settle down.  It was such a relief.  She had periods of discomfort during the day, but it was nothing like those first 12 hours after the anesthesia wore off.  As long as there is Lortab on board she does pretty well.  Her face is swollen and she is starting to bruise.   We are told it is most likely going to get worse. But it's a perfect circle!
She is really starting to come back...but I'm still waiting for her smile.
My mom and dad and Nile came to visit.  By the time they arrived she was pretty calm, and didn't have much connected to her.  Nile did well...he was more concerned about the presents she had waiting for him to open. My mom and dad seemed to do well too.  We Skyped in the hospital room with Grandma Hot Dog and Aunt Carole.  Still not sure if hospital policy allows that, but it was worth any risk!!!  I am so glad that none of them had to see her earlier.
She has been scratching her face and tummy a lot so they have her on benadryl.  We are trying to see if she can go without morphine, and she hasn't had it since this morning.  She has been eating well...but no one is surprised about that.

They plan to remove the wound dressing tomorrow.  I feel so good about everything right now, but I don't think I'm ready for that.  The dressing is starting to pull back a little and I have caught a glimpse of her bald, bruised, swollen head. It's easier to handle when it's covered by cute pink gauze.  It's going to be hard when we start taking her out into the public.  We will try to keep hats on her, but with her Houdini-like talent, I'm guessing it will be next to impossible to keep anything on her head.  She needs to know that she is beautiful. And very, very brave. So I have to be brave.  After all, I am her "Ma Ma"!

i will praise You in this storm

Now, I'm all about being positive and stuff, but this really sucks!

I did get to hold her and cuddle her and kiss her round head - for 3 hours straight during the night.
They just can't get Adeline's pain under control. 
She is miserable. She has cried and cried and cried, her voice hoarse from being intubated.  My arms fell asleep from holding her so tight.
If she isn't being held, someone has to stand by her crib to keep her from thrashing around, we pat her tummy and tell her everything is alright.
Her 15 tubes became a tangled mess as she tossed and turned and kicked.
Shes had a double dose of morphine, some tylenol, darvocet, lortab, ativan and benadryl...and the pain finally stopped...for 45 minutes.
We both slept for just 45 minutes when I woke up to 5 nurses in the room. she had pulled out her iv and arterial lines and there was blood everywhere
Her hemogloben dropped down to 5. She had to have a blood transfusion. She would have needed one even if she hadn't pulled her line out, but it certainly didn't help.
She has had a fever.
She itches terribly from all of the morphine, so she keeps rubbing her splinted hands in her eyes.
Her face is swollen, and she can barely see.

We have had at least 6 doctors in here and they all say the same thing,  This is all normal after cranial vault reconstruction and it will get better with time.  She has a unimaginable headache, she can't see, she is in a strange place with strange things coming out of her body. She's tired but she can't sleep. She hates the nasal cannula. She is constipated - her belly is distended. Her whole body itches but she can't scratch.  And she doesn't understand why. So she cries. And I cry.

But it will get better.

Wednesday, December 29, 2010


So last night's exhausted doesn't even compare to tonight's exhausted. But now I'm up, watching her every move, listening to her every breath, flinching with every sound the monitors make. I just laughed at the thought of a hidden camera in the room...they'd probably pull me out in a straight jacket.  My eyes keep darting back and forth and my head moves to look over at her at least every two seconds. She kicks her legs and yells every few minutes, just to make sure I'm paying attention. I think I may have all night to write.

Adeline started the day with the biggest bottle she has ever drank in her little life. It was like she knew she had to guzzle it down!  And really, she did wonderfully all morning. She was in a really good mood.  Of course, she was showered with attention.  We did anything and everything to keep her smiling.  I almost bought her a pony but Aaron wouldn't let me.
We arrived at Children's around noon. And were in the C.A.R.E.S. (surgery) unit by 12:30.  We had visits from many of the staff members that were going to be involved in the surgery.  They were all very reassuring and glad that Adeline was so healthy.  She gave us a little scare over the weekend - she had a low grade fever and sinus congestion.  But it was gone by Sunday evening, I think it was just teething.  I spent the entire past 4 days praying. Hard. And it worked.
We spent most of our time in pre-op waiting for the blood type and cross results to come back.  We spent a little time playing in the toy room, but things moved along pretty quickly.  She hated the needlestick, but the phlebotomist did an awesome job, and Adeline forgave her quickly. Dr. Puccioni came in and held her for a little while - she looked him over really good and then gave him a biiiig smile to let him know he was o.k.  Dr. Miller's resident came in and wrote his initials on the side of her forehead to let everyone know that she was the "right" baby for the procedure.  The anesthesiologist explained how she would give Adeline anesthesia through a mask first to put her to sleep before they started the I.V. lines and arterial line.  Then she would receive general anesthesia before they would intubate her and place her on her tummy with her chin in a special form that would allow the surgeons to have access to her entire skull.
It was hard to let her go when it was time for her to make the trip to the operating room.  But when the nurse defied hospital policy and carried her instead of making her ride on the gurney I was able to let go a little.  They took her to the O.R. at 2:30 and Aaron and I kissed that little oval head good bye with tears running down our cheeks.  We walked out into the waiting room and sat and held each other for a while.  It was completely out of our hands.  I held onto the rosary that Uncle Tim had given me the night before so tight that I broke it. A nurse came out to talk to us at about 3:30 to tell us that the procedure had begun and things were going well.  She came back at 4 to say they were still removing the skull, but everything was progressing nicely.  She came back again at 4:30 and things were still going smoothly.  They thought they had about an hour to go.  At about 5:10 I looked towards the O.R. and saw Dr. Puccioni and Dr. Miller walking towards us.  They both smiled and said they were finished.  Everything went great!  Dr. Puccioni said that they were surprised at how much pressure there was on her brain.  But he was able to remove her skull easily, so there were no complications, no transfusion was needed (except they did recycle her own blood), and the surgery went fairly quickly. Dr. Miller said that she does have a large opening where the sagittal suture was, but it will fill in on its own in time. I cried with relief and gave them both a big hug.  I thanked them for arranging surgery so quickly, and for doing such an extraordinary job.  I wonder if they really know how much something that they do routinely has influenced our lives.
Adeline was transferred up to the PICU around 6:00.  The nurses record her vitals at least once an hour and check on her frequently. Her hemoglobin is down to 7, but the PICU doc thinks she can handle it and doesn't want to give her a blood transfusion quite yet.  She looks like a porcelain doll - Except for the fact that she has lines coming of every limb - some have 2 or 3, she has monitors on her chest, a nasal cannula, and her head is wrapped in pink gauze and has a drain coming out of it.  Her O2 sats have been dropping into the 70s so she is on oxygen.  Her urine is a little cloudy and dark, but they have her on I.V. antibiotics anyway, so the doc isn't too concerned.  She gets morphine every two hours and Tylenol every four.  She is becoming increasingly aggitated as the night progresses, but that is normal.  The brain doesn't like to move.  Even though the pressure on her brain has decreased,  is very painful as it relaxes into its natural shape.  They just gave her an extra dose of morphine.  They are also going to give her some anti-nausea mediciation and then pedialyte.Her face is beginning to swell.  She is opening her eyes now but they are already pretty swollen. We are told they will probably be swollen shut by tomorrow.  But that is also normal and will go away on its own.
But God has given me the ability to look past all of the gauze and tape and nasal canula and I.V.s and tubes and see my beautiful ,sweet Adeline!
I just can't wait to hold her and cuddle her and kiss that perfectly round head!

My help comes from the Lord

Praise You in This Storm

words by Mark Hall/music by Mark Hall and Bernie Herms

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away


I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth


Tuesday, December 28, 2010

tomorrow it will be a circle

I should be exhausted.  Well, I am - but I'm also wide awake. 
Our appointment with Dr. Puccioni went well today.  He explained everything again, and this time my mind was clear enough to listen and understand.  Like Nile said, her head is an oval and they are going to make it a circle.  He restated the risks.  The funny thing about that is that I am always nervous about explaining risks of procedures to patients.  I guess I don't like to deliver bad news.  But when Dr. Puccioni tells me what could happen during the cranial vault remodeling, for some reason, it makes me more confident.  I know it needs to be done.  I know what they will be doing.  I know the worst that could happen, I know it rarely happens, and if it does, he and Dr. Miller know how to fix the problem.  And God will take care of it all.  Dr. Puccioni actually told us how he removes the skull from the brain in parts (he even gave us a visual with hand gestures), sets in on a table on the side, and Dr.  Miller shaves and cuts those parts to reshape the skull.  He puts it all back together - with dissolvable plates and rivets - so it will accommodate the brain's growth.  He said you can actually hear the pressure release after he removes the fused sagittal suture.   The brain relaxes and expands into a normal shape.  And Adeline's head will be a circle.  Nile will be pleased.  There is a chance that she will have to return for another, less invasive surgery to repair the frontal bossing and the sides of the skull if they do not reshape themselves correctly, but we will get through this first.
So I really didn't want Adeline to fall asleep quickly tonight.  And it's okay if she wakes up.  Maybe she wants me to hold her all night.  And kiss her head.
I know her hair will grow back quickly (and they will give me the hair after they shave it).  I know that when she is old enough to notice the scar that spans her head she will have no idea where it came from until I explain it to her and show her pictures.  (I wonder if she will thank me.)  I know that some day this will seem like no big deal.  And I am grateful that this is a condition that can be corrected. I am very excited to watch a more comfortable, headache free, developmentally normal Adeline grow up.
But tonight, for just a little while longer, I want to hold onto the beautiful, sweet, oval-headed baby that I have worried about for the past 6 months.

Saturday, December 25, 2010

We are Blessed

Wow. What a beautiful Christmas. Aaron, Nile, Adeline and I (and Pete and Ceda too!) have spent the last 52 hours together, in our home. Besides going out last night for an amazing Midnight Mass, we have been cuddling, playing, telling stories, opening gifts, eating and relaxing together.  Just the four of us.  And it's been awesome!  I couldn't count how many times in these last 52 hours that Aaron and I have smiled at each other and said, "We have been blessed".
Santa did find his way.  Nile and I followed the NORAD Santa Tracker on line, and when Nile realized how close Santa was to Iowa he put his snack back in his bowl and anxiously told me he HAD to get to bed.  I have never seen him so nervous!
It has been hard to be away from family this Christmas.  We "Skyped" a little today, and that helped.  Nile hasn't complained much, he just asked if we could go to Grandma Hot Dog's next time everyone else was there.  And my mom and dad might pick Nile up tomorrow so he can spend time with Dru and Jack.  We haven't explained to him that we have been staying home to keep Adeline healthy.  I would be crushed if he blamed her for anything he missed.  But God has blessed us with the best Christmas ever...I don't think that Nile feels he has missed out on anything.

The Children's of Omaha OR called on Thursday to give us preps.  I was very relieved to hear that Adeline can have breast milk until 11:00 am on Wednesday!  The poor girl had to repeat it twice before I believed her!   The surgery is scheduled for 3:00 pm, and we don't have to be there until 1:00.  I can handle that!  I had horrible visions of pacing the hospital hallways all morning with a starving, screaming little girl.  The only thing I really had to do to prepare was to remove the cradle cap from Adeline's scalp.  And I've been giving her an Iron supplement daily.  She has been teething like crazy, chewing on everything she can get to her mouth.  She is soooo close to crawling.  I think it would be safer if she wouldn't start crawling before the surgery, but I could just see the little stinker master the art the day of.

I truly hope that we will find the time to feel this grateful every Christmas to come.  Because we are blessed.

Wednesday, December 22, 2010

Pre-op appointment #1

Adeline had a pre-op appointment with Dr. Rehan yesterday.  She's good to go!  Dr. Rehan kept giving her hugs and kisses, telling us (and herself) that everything was going to be alright.  We are so lucky to have found such a wonderful pediatrician.  We went to the St. Luke's Lab for a blood draw after.  The ladies there were great - Adeline smiled and laughed at the phlebotomist...until she stuck her finger.  Aaron and I were both there watching.  I'm surprised how well we took it, but the phlebotomist did a really good job.  Adeline looked at me and screamed "MOM! how can you just stand there and let this girl do this to me!" She was fine by the time we got back to the car. 
The surgery isn't scheduled until 3:00 pm, but I wouldn't be surprised if it starts even later.  I know that she will have to be NPO for the majority of the day, but I am hoping that they will let me feed her in the early morning at least.  She is a 20 lb 6 1/2 month old baby ...(and that's with her shoes off)...  She is going to be MAAAAD by 3:00 pm.  Dr. Rehan thinks they will have us come in earlier to get the I.V. started and keep her hydrated with I.V. fluids.  I really hope so.  I have started thousands of I.V.s, but there is no way I will be able to watch them start hers.  It makes me sick to think about it.
Dr. Rehan told Aaron that the blood work looked good, but her red blood cells were a little light (I'm guessing that means there were a smaller number that what she had hoped) so we have started her on an iron supplement.
She had a miserable day at the sitter today.  She barely ate again, and she just cried and cried.  It could have been a tummy ache - the antibiotic she was on has caused some diarrhea, and it may be causing a tummy ache.  It could be teething.  Since Dr. Rehan just saw her yesterday and she was VERY healthy, I'm thinking it was just a one day thing.  But if it is a headache at least we have less than a week to wait.  Joann gave her Tylenol (she can't have Ibuprofen until after the surgery), but it didn't really do anything.  I put her to bed early, and she fell to sleep fast, so maybe it has passed.  And sometimes babies just have a really bad day.  Thank God Joann has the patience to keep loving her...even if it meant that the Christmas party had to postponed until tomorrow.  Poor kids!  When she is all better Adeline is going to owe them a pizza party...with no crying!

Saturday, December 18, 2010

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.

Wednesday, December 15, 2010

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.

Thursday, December 9, 2010


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. 

Tuesday, December 7, 2010

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'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.

Saturday, December 4, 2010

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.