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!
Monday, December 10, 2007
Wednesday, November 28, 2007
Welcome to Fisher's Forehead Blog
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
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
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