Fisher's Forehead

Fisher's First Birthday

2008-02-03T07:49:00.000-08:00

What a great way to end the month of January! Fisher turned 1 on January 27th. His head is doing great! His forehead has no ridge sticking out, and his eyes do not seem so close together....He also recites the alphabet backwards....(just kidding!...I don't expect that for another 6 months :)

Fisher will probably start walking in the next week or so. He cruises around while holding on to the cupboards and furniture. He acts like nothing has happened. The only residual effect is if a stranger comes too close to him, and looks at him too long...he thinks it is a doctor and really starts to cry with fear. Fisher also freaked out in the Rehabilitation Center/nursing home when Bleu took him to visit Bleu's mom a week after he got out, thinking it was the hospital again.

Also, during the first 2 weeks or so, we had to adjust Fisher into sleeping in his crib again...for the first week he refused to go in it, with memories of his hospital crib. This week is his first week he is really sleeping all night alone...with waking up once or twice, needing us to soothe him back to sleep.

His stitches are healing beautifully. They are the dissolving kind, but we have to rub them during the bath to try to loosen off the outside stitches as the dissolve under the skin. I think that hurts more for me than it does him, which is good.

We went back to CHOC for an quick appointment with Dr Sundine the day after his birthday, as on Jan 23rd we woke up to notice an indentation on his forehead instead of it being flat, as was before. Dr Sundine said it was unusual but when he looked at it, he said it must be just the swelling going down unevenly. It still is there, but barely visible.

What a difference, though!!! During the first week after his operation, I had to adjust to his new look...He looks great...but does look different than he did since I have known him. It definitely is an odd feeling for a mom. I am so happy he is doing well, and had bounced back so fast!!!!

Thank you everyone for your prayers and support....I have gotten more and more people contacting me after his operation saying they were praying for him on January 8th. We all appreciate it so much! Fisher is a very loved boy!!!

If you are reading this and have a child with the same condition...please feel free to email me at alison@bleucotton.com and I can answer any questions and help you with support. I know Craniosynostosis is a condtion you don't ever hear about until someone you know gets it....and then it is shocking since you wonder why you never knew about it before. I have learned that a lot of kids may have it...but they have been operating successful for over 25 years! So if the doctor you meet with knows what he is doing, you are in good hands!

Fisher's Fotos!

2008-01-13T23:04:00.000-08:00

Here is the transformation over the past year of my Cutie Patootie! You can see the Metopic Ridge in the middle of his forehead.

This is Fisher the day after he left the hospital a year ago almost. Fisher at 2 months old.

Fisher at about 5 months old.

Fisher's 9 month old portrait at his dedication.

Now, this is Fisher with his Blue Steel Look last Monday Night 1-7-08.

And in his bath last monday.

Tuesday Night 1-8-08 at 7pm, about 6 hours after he came out of his operation. You can see one of the drain tubes. The next day, swelling hides it.

8:30am Wednesday 1-9-08, his swelling starting....not feeling really good!

1pm on Wednesday, 1-9-08 ...24 hours after his operation, swollen eyes.

6:30pm on Wednesday, 1-9-08 with an icepack on his forehead...my creative Diaper Ice Pack that actually worked better than the ice pack CHOC gave me! He is continuing to swell.

Thursday 1-10-08 at 6:30am before we moved out of ICU. Drinking his bottle with his swollen eyes and E.T. glowing big toe.

10:30am Thursday 1-10-08 in room 517. Still swelling up even more, and getting shiney skin as predicted.

1-10-08 Thursday at 1:30pm..his swelling moving down into his neck. I held him on pillows on my lap, he could not lift his head at all.

3:30pm Thursday 1-10-08 his eyeslids began turning red.

Thursday 1-10-08 at 9:30pm. Sleeping, and actually starting to look better.

1-11-08 Friday at 9:30am. Fisher and his pals.

1-11-08 Friday at 12pm. Dr Sundine took out the 2 drain tubes in his forehead and on top of his head. The Sumo Band was to hold the pad of gauze on the 2 holes behind his right ear.

1-11-08 Friday at 5:30pm... the first photos of Fisher peaking out of his eyelid slits. He loved catching up on emails on Daddy's phone.

Ya! A smile for mommy when he saw the camera!

1-11-08 Friday at 7:15pm looking at his horsey.

1-12-08 Saturday at 1pm, napping. The I.V. was moved from his foot to his hand. His eyelids were really red as the swelling left his eyes.

1-12-08 Saturday 3pm. Sitting up in Daddy's lap smiling and seeing us through his little slits.

1-12-08 8:30pm Saturday...after watching the football game in the family lounge.

1-12-08 10:30pm Saturday. Asleep but not for long, as the toilet flushing incident is about to occur soon!!!

1-13-08 Sunday at 12pm...we just got word we are leaving soon! Watching Mommie pack and being his old self again!

I love this shot!!!...Looks like Mr. Trouble is back in town!

2pm Sunday 1-13-08. Leaving CHOC, and stopping by the hospital radio station to request a song!!!

1-13-08 Sunday Night 7:30pm and back at home. What a different forehead! There is still swelling, and I am not sure about how much it will be going down..but you can see the difference in the eyebrows and width of his head!

OK...one last comparison...Here is an after shot...and below it is from a week ago... before the operation.

Before....

Happy Healing Fisherman!!! Love, Mom & Dad!

Fisher Bleu is back!

2008-01-13T22:39:00.000-08:00

I am sitting in our living room, and Bleu and Fisher are sound asleep on our bed...yes, we made it back home today!

Last night Bleu went home to sleep...as he felt he was getting a cold after the lack of sleep during the week, and only one of us could stay the night. Fisher got to bed at about 10:3o pm, after an exciting day of seeing again. I was all tucked in the cot ready for watching a couple minutes of SNL as a treat, and ready to then doze for few hours of sleep. That is when a nurse working with our roommate decided to flush the toilet on our side of the room...ugh! Fisher woke up and cried and cried...another reason why every hospital needs single rooms!!!.... I took him on a walk around the halls in a radio flyer wagon that CHOC has for calming kids....it was a moment in time I will never forget. He was so content!

Well, we ended up walking at 11:30pm, 1am and 4am...with only a tiny bit of sleep between. After our 4am ride, he finally got comfortable between my legs with his head on my stomach, and I slept on my back, as if we were ready for a bobsled ride....It was nice to know we could snuggle with less fear of hurting his sensitive body.

Today we hung out in our room, took another wagon ride, and waited for Dr Sundine to let us leave. Yippee! He was so pleased at Fisher's healing.

On the way out it was 2pm and there is an In House radio Station at CHOC called Radio Lollipop, which kids can listen to and request songs. It was donated by Ryan Seacrest and KISS FM I believe, and is such an amazing addition to the hospital. It is in the lobby, so we stopped by and requested "Good Day Sunshine" by the Beatles for Fisher.

Back at the house, Fisher is doing great! He only took his Tylonal with Codeine once today, instead of every 4 hours. He is playing with his toys, getting in trouble, and being the best baby ever!!!! I still am amazed at his transformation. I will miss his old look...I never thought about the fact my baby's appearance would change....but let me tell you, he is very handsome now!!! Watch out, ladies!!!!! This is another reason why photography is so important in our lives, we photographed him so much that it will be great to look back on, years to come.

I will follow with some photos of this last week. They may be shocking, so please be warned. I hope this will help others going through the same path as we took over the last few months.

So, this is the end of our journal, except if there is anything that arises at the follow up appointments in 2 and 3 weeks. I will also add a photo when Fisher has no swelling and no stiches. Hopefully I can contact CAPPSKIDS.ORG and connect this site for part of their support group for others.

Once again, thank you for being a part of our journey! Fisher is a very lucky boy to have you so close to him this week.

Our love, Ali, Bleu & Fisher, too!

Good day Sunshine!

2008-01-12T22:33:00.000-08:00

I think my title is a perfect one for today's blog entry, as I heard this song
today as I drove back to CHOC and listened to it on the loudest volume in
the car.

Last night I slept like a log ....my bed felt the best it had ever felt.

Bleu and I talked this morning on the phone, and I could hear fisher
say "mama" in the background.  Bleu said fisher had a new IV put in
his arm last night at 1 am  after the one in his leg got too old and swelled
his ankle up.    He then slept until 7am....and was awake and very active,
eating baby food and fruit, his first big meal.   His eyes were swelled up
again due to sleep, but were slowly reopening.

When I got to the hospital I walked in and could not believe the difference!!!
He was sitting up in bleus lap being himself!   His eyes have opened up half
way and you can see the beautiful blue color that I missed so dearly during
the last 3 days.

This afternoon he became the social butterfly again and the swelling in his
head has improved dramatically. We spent the afternoon playing in the
family room, away from his cribside.

Now I look at him and can see his forehead looks so different!  The new
shape of his forehead  makes him look like a different baby!!!

Right now I am with him getting him unwound for bed.  He is laying in
his crib just relaxing and fighting his sleep. He was awake for 12 hours
straight.  It has been the best day ever!!!

In the next few days I will post all of his photos, as we photographed all
 of his stages.  It is really incredible!!!

Good night!!  Ali

Fisher is sitting up!

2008-01-11T23:11:00.001-08:00

Bleu called me tonight from the hospital, as I got home for the first time since Tuesday am to spend the night here. Fisher was sitting on his lap grabbing at his phone as he spoke to me. I have to totally say...What an amazing ride it was from after the operation til today...he got so swollen on Wednesday and Thursday that we could not even see the tubes in his forehead....it was like a cocoon...he hid in this swollen shell that now is removing himself once his body could kick in and repair himself. He really is a superhero...babies amaze me with their recovery abilities. Dr Sundine had told us if we took off his skull, he would and could actually build himself a new skull from the layer below. Just amazing. And he is able to now emerge and come out to have the same movements and motions as before. Just incredible. And what else is incredible is that I can SLEEP tonight!

When we get Fisher home I want to put the photos up on this blog of the whole transformation. It really will be amazing and shock you. Stayed tuned to see them!!!!!

...day 3, 5:45 PM

2008-01-11T17:45:00.000-08:00

Today Fisher's swelling is starting to go down.  It is nice to see
the end of the road of recovery ahead.  He looked like a pumpkin head, and every hour yesterday you could see the swelling grow and grow.

Last night was the first night in the regular childrens ward.  We
had a roommate move in, and fortunately she moved to a different
room since the roommate match was not good....So we had the room
to ourselves which was nice, allowing Fisher to sleep better.
He woke up every 2 hours and we even got to sleep in and be low
key until about 9 am.

Today Dr Muhonan said he may be able to leave tomorrow if he can
open his eyes.  Dr Sundine took out his 2 drain tubes in his head....Ouch! He just pulled them out in about 20 seconds. 
So now he only has his IV for his antibiotics and his pulse monitor
on his big toe.
He now just has an added band around his head holding the gauze over
the exit holes of the tubes by his ear.  My little Sumo Wrestler.

Today was a day we saw his body look better instead of looking
worse...it is a nice feeling.  He is now eating a little bit of
solids and milk.  We took off his "no no" arm bands that were on
to prevent him from pulling at tubes.  His eyes are itching, so we try to keep his hands away, and use a long Qtip to softly run over his lid and below his eye to relieve the itching.

Bleu is staying with him tonight.   Hopefully he will get more sleep
than the last nights.

Our new roommate who arrived today has been
a better match for us, but I am a huge huge believer in raising money
for hospitals to build new wings with single rooms...the high noise
level and constant activity to a patient when there is a roommate cannot
be beneficial to a healing child....  Don't get me started....

We will update again tomorrow....



NEWS FLASH......  As I am writing this by his crib, Bleu went to the other
side of the crib and we changed his diaper... And his left eye opened to
see us... His swelling has gone down so we can see his eye.  I started to
video tape and he reached out to the camera as he always does to grab it.
Now a few minutes later, as I write,  he has stuck his toe in his mouth,
played with Bleu's phone, and talked babble at us.  I now see both his
little eyes peeking out of the little slits....what a amazing experience...he
is a different baby!!!

What a night!  Our love,  Ali, Bleu and fisher, too!!!

Day 2...... Oh my, it feels like its been longer!!

2008-01-10T14:47:00.000-08:00

Fisher was up every hour, but we did sleep well from 5 to 7 am. We moved to the 5 th floor at 8 am, and left our luxurious single room. Now we are in a room that had an older boy who just checked out, and now rumor has it that a girl is moving in. Fisher is such a ladies man!

It is really not the best situation to be in a room with another child when all we need is quiet. It also is not fair to an older child who should not hear a baby cry in pain so much. I still remember my hospital stay as a 2nd grader, and the child next to me who had a pin through her legs...she moaned and cried and really impacted me as a young kid.

We are by the window, which is nice. They took out his IV line and the monitors on his chest, and his catheter. He does have a temp of 101 but that is expecte, it has been going up and down a little as he swells. His face is very puffy, and now his neck is too. He is not interested in food yet. He threw up twice when he drank pedialyte and then had the cherry flavor tylonal and codeine. His poor tummy is not happy with the medication. The nurses are giving him something in his IV for his queeziness.

Right now he is on my lap content and sleeping. I am about to doze off now, too!

Our love,

Ali

Late night with Fisher McGee

2008-01-10T00:46:00.000-08:00

It was a quiet day, I held Fisher for a little while on my lap because the doctor highly recommended it to help him heal faster. He was still really sore, so I knew he had to stay back in his crib for a bit more. He slept on and off, and the nurses checked on him often, and gave him his pain meds, checked his IV fluids, and checked his vitals. Whenever they check on him, he gets mad and cries and we watch his heartrate go from 130 to 190. The alarm goes off and then I start singing to him and rub his hands to calm him down.

Tonight, Fisher slept from 6 to 11PM or so...so I was able to enjoy a sandwich from Trader Joes and take a hot shower, rest and get to sleep at 10. I just woke up hearing the nurse with him at midnight. Fishers blood pressure went up a little and got uncomfortable and he gave him medicine. I guess he growled at the nurse....that's my Fisher!!!

I got up and sang to him and Fisher chewed on his nipple of his bottle and made more little typical noises...and I sang his bath time song and he started waving his arm with the bottle in it...it was so cute. Then he flipped the bottle over and out the opposite end edge in his mouth...in his typical fashion....so that was a good sign.

Seeing him now is a little more shocking to me, just because I had taken a break from seeing it while I slept, and it is getting a little worse. I just want to see him not hidden by his mask anymore. He totally does not look like Fisher pre-operation. It is crazy to think of him from just a few days ago...it is very surreal.

He is back asleep and I ate a few delicious chocolate chip cookies snd turned on my comfort TV...Jay Leno.

This night shift nurse is THE best ....Mickey....he was totally giving him attention and comforted him when he did not feel good. He has been also making sure I am good...he suggested I get a shower and offered me snacks if I needed. I am so glad he is so attentive tonight!!!

He asked if Fisher needed a new ice bag for his head and then said..."Why are they using diapers with ice in them to put on his head?? There is a thinner ice pack bag meant for their head"...I did not say anything but smiled to myself! The nurses on the first shift were using a rubber glove with ice inside to put on Fisher's head, and that is when I suggested to them to use a diaper, since it soaks up the melted ice and contours better to the head...a trick I learned from a couple of Hoag Hospital Nurses when Fisher was born. The CHOC nurses thought it was a cool idea. I did not say anything when he brought out a real holder for ice for laying on his head. I wonder why the first nurse used a rubber glove with ice... I guess they did not get the memo about the real ice packs! I just had to laugh at his comment!

Ok, enough rambling...back to bed!

Love Ali. 12 45 am

Day 1 of Fishers Recovery

2008-01-09T13:05:00.000-08:00

Last night fisher woke up about every hour, which was to be expected. Bleu slept in his room, and down the hall is a Ronald McDonald wing, with 5 small sleeping rooms, a kitchenette, TV, for families. I slept there and have a new appreciation for Ronald McDonald houses!!! I knew about them, and remember one being built by the hospital where I grew up...but now as we needed one ourselves, I can tell you it is such a great organization!! There is full house down the street, too, for families with kids in CHOC. It means the world to families with kids here!!!!

When we got back in from our food break, the nurse said that Fisher just woke up and stood up in his crib with all the bells and whistles hanging off of him. He started freaking out since we were not there....that made us feel so awful!!! It was random he woke up so soon and got all upset over us not around. We felt so bad! So we will not be leaving him again for sure!!!! Now when the shift changed, I warned them that he's a stander, and they said..up we know! It is in their notations to watch out for the wild child.

Fisher is recovering really well!!! They switched over to mostly tylonal with codeine last night but got more morphine this am at 5. We are getting him off that today.

Today his eyes are swollen shut and his bruising is starting. Tomorrow it will be at its worst with tight shiney skin. He is pretty tired from the codein side effects.

He did wake up at 11 am and lay in bed kicking is feet a little but held my hand and talked his baby talk to me, so it was nice at that moment to see his personality shine through.

Dr Sundine came in at noon and said he looks as he should, and I can hold him. He will get his drain tubes out on day 4 and go home day 5.

He said the pain will be bearable and he will have tylonal for it. It is not as painful as a stomach operation because with that you have movement involved which adds to pain. The only movement with his head is his eyebrows. So that is good news.

So he had his first bottle of pedialyte and is doing good, sleeping still a lot.

I will add blogs entries each day once now, unless anything else comes up. Email is still best way to contact me. Alison @bleucotton.com.

Once again, thank you, thank you, thank you for being on this journey with us!!! Thank you for your prayers!!

Love Ali, Bleu & Fisher, too!

ICU

2008-01-08T16:45:00.000-08:00

Little Fisher Bleu is now resting in ICU at CHOC. There is a bed in the room with him and just down the hall is a Ronald McDonald wing that I will sleep in tonight. Tomorrow Bleu goes to do a huge corporate job in LA with his son Nate. I will be hanging with the fisherman. It is so hard for him to go, but through the magic of cell phones and texting, it will be like he is right here.

Many people have asked about visiting...I would say let's hold off until he is moved to the regular floor. Tomorrow his swelling will start, and my little Fisherstein will not be too good to view. He needs to rest and have quiet time, too. Wow, I look at hims and can't believe what he has gone through!

We spent about an hour in recovery until 3PM, and his forehead looks great! Kudos to our team who worked on him. He has a flat forehead! It is round and not peaking out. He also has a tube under the skin across the forehead for draining fluid and blood..He has a huge sewn up line across the top of his head, where the incision was made. They warned us that we both could go in to see him, but only one of us could stay in the recovery with Fisher, as a rule. We were so fortunate that they never tossed one of us out....I think they do that so it does not get loud and crowded, as the recovery is a big open room with many patients right out of surgery.

Of course he has many tubes attached to him. They use legs and not arms for babies for the IVs, and he has one on each leg. A catheter is attached to him, an E.T. red light on a pulser reader on his big left toe, and the 2 drain tubes on the top and front of his head that lead down to the right ear, where they come out of his head and lead to 2 bulbs which gather the blood and liquid that accumulate. He can still see, and is not swollen, but will be swelling up over the next 2 days, the doctors say.

We are now grabbing a bite at Original Mikes...an perfect place down the road...we left him in the hands of the wonderful nurses there for a little while. We will head back shortly.

Thank you everyone for tuning in today! I will update tomorrow, and keep praying for his recovery...he has a lot to do in the next week! Our love,

Bleu and Ali
445 PM

1 p.m.

2008-01-08T13:11:00.000-08:00

Dr Sundine just came in at 1 PM and told us he is fine. They took out his tubes and he is moving his arms and crying. The Dr was pleased with the surgery and said he has a nice forehead...or something to that fact. We were so happy and relieved to see him it is now a blurr. He said to remember that fisher has a drain tune in his forehead, so we will see a squiggly bump over his eyebrow area.

We are now waiting for us to be called back to the recovery room.

We are now praying for the child and her family who are near us in the waiting room, as she needs OUR prayers...it is quite an emotional place to be now...many kids are not as fortunate as we are.

Its now 1:10 PM

A and B

Bionic Baby

2008-01-08T10:52:00.000-08:00

This morning we brought fisher into the short stay unit at 6 am, and Juleah, who is the sister in law of our client, Rondi , was our nurse. It was so nice to have her friendly smile greet us.

There were about 6 rooms with other kids and families waiting their opperations, too. We signed a few forms and they checked Fisher's vitals. He was a perfect little guy. It helped us so much feeding him before he went to bed. Hunger was not an issue like when we got the cat scan.

We put him in a blue gown, and we all got wrist bands. Some toys, cartoons on TV, and blowing bubbles kept us busy for the next hour.

The anesthesiologist, Dr Grewal, came out to introduce himself to us and check up on fisher. Dr Sundine arrived and took a couple "before shots" of him. At about 7 25 the O R nurse walked us to the double doors to the operating room connected to our short stay unit. We handed him over to her and went back to area. It was tough for us.

Dr Muhonen came over to us to touch base before he went in. During the first hour they would be prepping fisher up and setting him up with anesthesia. He had another smaller operation before fisher.

Bleu and I went to the cafeteria for breakfast about 7 45. They gave us a pager incase they needed to reach us. We knew we had 5 hours of waiting...it was the weirdest feeling knowing what was going on right now to our baby.

At 830 we got back to a bigger waiting room with a TV and comfy chairs. We saw dr Muhonen speak to the other parents about finishing his operation, and knew it was our turn next, and Fisher must have spent the last hour getting all prepped and put to sleep.

We got talking to those parents after he left, and they told us to touch base with the Ronald McDonald House after he gets out of ICU, when they move fisher to a private room he will be sharing it with another kid. They can bring in a bed for us, but it is not like the icu. The Ronald McDonald house has rooms, showers, and food and is a lot easier to be at rather than go home.

At 9:30 our dear friend Julie Burke suprised us with a care basket of food. Yum!!! When she was here, Dr Muhonen came out to meet with us and tell us that the skull is off, and that is the hardest part, his vitals are good, and now it will be about 3 hours for Dr Sundine to do his work.

So here we are still waiting. It is about 10:30am as I write this. The cell phones do not work here unless we go to the hall, to the outside door, stand on our left leg and hop around in a circle. So we will be checking messages and emails when we can.

Ali & Bleu & Fisher, too.

Countdown to the Bionic Baby

2008-01-07T23:04:00.000-08:00

Today Bleu and I went to CHOC to the short stay unit to pre-register and have some of Fisher's blood drawn again for them to do a final compatiblity check for our blood. We match, but now they check for antibodies in our blood that would be an issue with his blood. If so, they will pull blood from the blood bank for him.

The faces were familiar in the short stay unit...although last time we were there for the CAT scan, it was the last day they were in the old building. Now it is located in a new area by the emergency room at St. Joseph's. We actually had photographed one of the nurses before, and another is a sister-in-law to a good client of ours...and in that family there is a nephew who just went through the same operation...wow, a small world, I must say!!!

So tonight we hung around with Fisher, just enjoying all of his Fisherisms...he crawls all over the house like a little mouse...giggling the whole way. He spent time pushing closed doors, and pulling open dresser drawers. Before he went to bed at about 9pm, we fed him a 2nd dinner...since he cannot eat after 10:30pm or so, we wanted to give him an extra boost of nutrition. Hopefully he will sleep the whole night, since we can't pacify him with a water bottle.

I packed up overnight bags, since we can spend the night in his room...the intensive care unit is also brand new, and has room for 2 parents to sleep by him. I included some dvds, since they may have a player in the room, a couple of his books, stuffed animals and blanket....the rest of our super duper suitcase has too many things to keep ME occupied. I am sure you can ask Bleu about it after he finds out how heavy my suitcase is tomorrow morning at 5:30am...oops!

Tomorrow morning we will awake in time to get him to CHOC at 6am, for the surgery at 7:30am. I am not looking forward to it...but know I am in the best of hands. Dr. Sundine, our plastic surgeon was just featured in Orange Coast Magazine, and as we walked through the halls of CHOC saw Dr Mahonon's 8x10 hanging on the wall of board of directors. Our nurse today said if she needed doctors for her child, she would definitely go with them.

I have gotten loads of wonderful notes and phone calls tonight!!! I feel so blessed to have churches from all over the country praying for Fisher, along with so many of our friends and families...and even friends of friends...including Oral Roberts!!!...(I was blown away at the personal note he sent us!!!!)...thanks Kelly for sharing our story with him!!!...And thank you Cho and Sae and Ann and Karen for your continued Prayers, and Ken Sklute for your taking Fisher to heart!!!...Ravonda and Rita from Location 3 Magazine, Kathy Jo and Gini, Julie, Nisie, Gail, and everyone else from the wedding industry...Arlene, Jill, Rochelle, the Roosters, Heidi, Steph, Judy, Terri, Jami and Michele...there are so many other people who have given us prayers and love, I am sorry I have not listed you all.

I am going to try to continue to post via email to my daughter - in - law in the next few days....but if I don't you will know I am preoccupied in our surroundings.

Thank you!!! From Bleu, Ali & the Fisherman!!!

Fisher's Post Op Appointment on Jan 2nd

2008-01-03T16:23:00.000-08:00

Fisher had a great first Christmas!!! This photo was taken at the Roosters Annual Holiday Food Drive. http://www.roosters.org/

Yesterday we went to Dr Sundine's office in Newport Beach. I feel really confident in his work. He is the plastic surgeon who will be working on Fisher on the 8th. He met with us and checked out Fisher. During the last 3 weeks Fisher had a cold with a fever of 102, then another fever of 102 last friday, followed by a body rash that lasted Saturday through Tuesday. His runny nose and the rash left him in perfect timing for his doctor's appointment yesterday.

If he does get ill it all again before the operation, we are still to bring him to the hospital and the anesthesiologists with check him over and have a final say. The doctor said last year in February almost every surgery he had as postponed from his patients getting the flu. I hope it stays on schedule, as I just want to get it completed before his first birthday.

His surgery is for 7:30am on Tuesday. On Monday the 7th we have an appointment to have his blood tested with ours. This is a final confirmation our blood is hunky-dory for him....they also pull it out of the freezer and get it ready for use.

Fisher will be in the Intensive Care Unit for 2 days and then about 5 days in the hospital. Dr. Sundine said CHOC is not just treating the kids, they are treating families, too, so we can spend the night and it is like a community there, with parents going in and out of their children's rooms. That is a great feeling. They know that children heal better with their parents near. He said much of the time as he is healing, Fisher will just want to cling onto our shoulder and hold us.

Blood Donation Day

2007-12-10T13:09:00.000-08:00

This morning Bleu and I went to St Joseph's Hospital in Orange to donate a unit of blood each for Fisher's operation. It took about 10 minutes for each of us. We then went to another building to have Fisher's blood drawn for them to test his blood type. If we match the blood lasts 35 days, enough for the operation. If one of us does not match, then the other can donate more at a later date.

Over the weekend I got so many wonderful emails in response to the email I just sent out. I still have to catch up with more friends and family and clients to update them. I was really overwhelmed with the love and prayers Fisher is receiving. Thank you Thank you Thank you!!!

Bleu's cousin, Cheryl, from San Diego, had some great information for us which I have posted below! She works with babies who have had this surgery....this was really helpful! I will surely keep in touch with her, along with others who have given me the contact information of friends and siblings with kids who have had this operation.

"I just wanted to let you know that I took care of many kids postop after craniosynostosis repair. When the surgery is over and he comes back to the room, because the head is highly vascular he will look worse than he feels. His eyes will probably be discolored and swollen shut and he'll look as though he went a few rounds in the ring. The skin may be tight and shiney from the swelling, but this will go away after a few days. Believe it or not because kids are so resilent, Fisher will be his old self in no time. After awhile, you won't even be able to see his scars. Babies heal very fast and very well.

"I know it's scary for parents, especially because they don't want anyone messing with their baby's head, but believe me he will be fine in no time.You'll just have to keep his head elevated to decrease the swelling and prevent him from messing with the sutures. So, it's really important that you stay calm, especially in front of Fisher, even if he can't see you he'll be able to sense it if you're upset. He's a lucky little guy, this surgery has been so perfected over the years, he'll be his handsome little self in no time! Anyway, just wanted to let you know, that even though the general public has not had much experience with this condition, pediatric nurses see it quite often."

That is great to know! I know Fisher will be in amazing hands!!!

Our friend, Kelly wrote us...

"...rest easy knowing that God does have a special plan and purpose – and He choose YOU to be Fisher’s parents … knowing that Fisher would have this condition, and knowing the strength and limitations that the two of you have. You are the perfect parents for that dear little boy – and every time you think, “I can’t do this,” you have to remember that yes, yes you can!!!

"Wow, I’m tearing up as I imagine your love for this precious boy pulling at your heart. Please know that the three of you – and the entire Cotton family will be in my thoughts and prayers constantly. I DO have great faith in today’s medicine. I’m certain that he will pull through and every Christmas for the rest of your lives, you’ll always remember the miracle that God has provided.

Great, Big, Giant Hugs,
Kelly"

I wish I could post all the notes to Fisher from all of you!!!! I am printing them all out and putting them in a special album for us to read during the rough times!!!...Thanks again!

Welcome to Fisher's Forehead Blog

2007-11-28T23:17:00.000-08:00

Bleu and I wanted to create a blog to educate and keep you informed about the going-ons with Fisher. I try not to think too deep about his operation coming up on January 8th, 2008...but every now and then it hits me and it is an awful feeling!

Since the day he was born we noticed his fancy eyebrow movements. We always joked about how he inherited it from his sister-in-law, Anthea....with her ability to raise her eyebrow in a "I know what you did" meaning. We also noticed his bones on his forehead and how they were prominently showing as they connected from the top of his forehead to between his eyes. I thought it was just from that final push in labor.

I looked around at every baby I saw to see how their forehead was shaping up at different stages but never saw the look that Fisher has. I summed it up as part of the peanut head from the Pierce side of my family...his Great-Grandfather, Grandfather, 2nd Cousin, and myself all had kind of a cute Peanut Shaped head...but not the line in his forehead.

Our pediatrician had an Xray done of Fisher at about 5 months, and decided the shape of his head was fine...and blamed inheriting the look of our foreheads. I was pleased at hearing this, but still was waiting for the bone in his forehead to tone down as he grew....it did not.

It was in early August that our friend who had photographed my labor was babysitting for Fisher while Bleu and I shot a wedding. When we got home, in conversation, Bleu and I told her about Fisher's forehead, and how we waited for the ridge to disappear.

She had not seen him in a few months, and emailed me early the next morning saying that she did not want to comment on it until we opened up the conversation about it, and she said in her opinion it was not getting better...and she sent me links on an website called http://www.cappskids.org/

Oh my gosh! This website talked about Fisher's Forehead!!! The photos of some of the kids looked just like Fisher!

As we read about it, it was brilliant and scary at the same time. We found the answer, but wish there was not a question in the first place.

What Fisher has is the Fusion of the Metopic Suture. This is the Suture in the forehead. Some kids have fused Sutures in other areas of the skull. Other poor babies have a lot of medical issues. Just so you can rest assure, Fisher is a healthy, smart, good-natured baby boy and has no other issues. Here is the link to see babies with the Metopic Suture Fusion.

http://cappskids.org/CAPPSCranioKids.htm

So in August we contacted our pediatrician, and she gave me the names of two doctors at CHOC, the Children's Hospital of Orange County. We met with one who immediated diagnosed him and asked us when we wanted to operate. That was scary...Let's get a second opinion....

So we contacted a Doctor in Los Angeles and set up a time for a consultation.

In the meantime, we did have a CAT scan for Fisher at CHOC. It was necessary for going any further for an operation. We were told that normally they operate at about 6 months... and there is only a small window until about 9 months to operate. Bleu and I were kicking ourselves that we did not voice our opinion loud enough that we thought something was wrong.

This was at the beginning of September. We took him in really early to St Joseph Hospital...about 6:30am. Fisher got so mad after not eating or drinking as we waited for the 2 and a half hours before the CAT scan at about 9am. That was so hard, seeing him suffer and not know why he could not eat. He had anesthesia because he had to be asleep to hold still. Talk about a scary time for Bleu and myself. In the waiting room we were beside ourselves. We dozed off just for an instant and was called in by the nurse. It had been about 20 minutes and the procedure was complete. Fisher was fine and slurping down his second bottle of drink. He recovered well and did not react as the nurses suggested he might....sluggish and sleepy and a sick stomach. You're my boy Fisher Bleu!

We got the CAT scan back the next week and made a follow up appointment for the CHOC Doctor. He pulled up the 3d Xray and we clearly saw on his skull the fused bone...normally you see the black squiggly line where the sutures are. His forehead had NONE! I was convinced!

So we made an appointment to visit with his Plastic Surgeon at CHOC who works along with the Nerosurgeon to discuss the operation with him. We learned he is not in the network for Blue Cross...so we may have to go through some hurdles to get the operation covered!!! Ugh!!! Luckily he is the only surgeon that is Board Certified who works on hard bone and not soft tissue...Who knows what it will really mean when it comes to Blue Cross paying...we just saw Michael Moore's movie "Sicko" and it scared the poop out of us thinking of the $13,000 bill not being covered by their 50%...and that is the plastic surgeon alone!...We are guessing we will pay out of pocket $30,000 for the whole operation and hospital stay.

We liked the Plastic Surgeon and felt comfortable with him, as with the Neurosurgeon at CHOC. He told us that when he first saw Fisher it was not the Ridge that gave away the Metopic Ridge, but the eyebrows and how they are pulled back....as Bleu and I noticed during his first weeks of life!!!

We still made our trip the LACH for our second opinion.

LA is quite different for Orange County. We waited 2 hours past our appointment to meet the doctor. He diagnosed Fisher the same. He said out of 1 - 10 Fisher was a 7, and yes, he would definitely operate on him.

We really liked this doctor, too. So the final decision came about that we wanted to be closer to home...Los Angeles was too far to drive, and we are talking about Fisher being in the hospital for 5 days. We also waited a few days to confirm that Blue Cross would cover some of the Plastic Surgery - the 50% amount.

So it was settled, CHOC it would be.

Now, as I said before, we were freaking about the time element we were working with. The first neurosurgeon said that we should operate in 3 weeks. The plastic surgeon said up until a year, and so did the LACH nerosurgeon. So we decided to wait until after Fisher's first Christmas and with a few weeks before his first birthday. January 8th it would be.

Now we are in the waiting stages. On December 10th Bleu and I go in to give blood, 2 units. I spoke to St Joseph's hospital and they set up the date. Hopefully we match his bloodtype.

Our donation of blood is incase there is a lot of bleeding during the operation. That would be the biggest issue. All doctors said the risks of this operation is minimal, and they have been doing it for about 15 years or more. So it is not a new procedure, which makes me feel good that it is not experimental.

That brings us the the final detail about Craniosynostosis....and why we are operating. As Fisher grows up the skull will not be able to expand in the front. Already we have seen the back part of his head growing and creating a bulb on each side of his head where we see the front is not expanding. They have not confirmed if it leads to issues like Autism, but I read of one case where an autistic boy had the operation at 2years and the pressure was decreased and blood increased to his brain and he seemed to improve. Right now his eyes are 4.1 cm apart. 4 cm is abnormal. He will gain more room when operated on. He also, although an incredibly handsome baby, would gain a more narrow head in front, creating a triangle head if NOT corrected...I know the ladies would still love him, but this is for his own self image, too.

Anything else I missed? Oh, if you look up "trigonocephaly" on Google, that is another name for the metopic suture craniosynostosis.

As I speak to people, I have now heard of 3 other kids who have had the operation as babies. I also have a friend who reads CAT scans and says that she actually gets quite a few each month with craniosynostosis...so it may not be as uncommon as we thought.

There is no real reason for it occuring. It was not my labor and pushing him out. Perhaps it was his position in the womb. It was not from my family genes. Our pediatrician kept telling us to have him sleep on his back...that mishapen heads can be corrected by that method. Well...not in his case.

So, as we get closer I will try (not promise but try) to update Fisher's Forehead Blog to keep you posted. Keep the Fisherman in your prayers! Thanks so very much!!!

Our love, Ali & Bleu Cotton