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Thursday, March 20, 2008

Our Little Jack-O-Lantern.

For those of you that were there, you will find it unbelievable that it has been FIVE YEARS today since Andrew had his skull surgery. I know, I can't understand how time passes so quickly either!

At 2 months old during Andrew's well baby check, his AMAZING pediatrican (Dr. Sandra Paniagua @ Kaiser) took notice that Andrew's eyes were slightly misaligned, that the right side of his forehead was just the tiniest bit flatter than the left and that his ears were mildy crooked. She explained that he could possibly have a condition where the sutures of your skull prematurely fuse together. I asked her what treatment would be. She explained that if it was just Plagiocephaly, he would get to wear a special "hat" to shape things up in there. I played 20 questions with her and I could tell in her face and her tone of voice that she didn't want to have to be the one to break the news to me - "it may require surgery".

My baby and I went directly from the exam room to get xrays next door. I heard back later from Dr. Paniagua that he would need further evaluation by a team of surgeons at Kaiser's facility in West L.A.

At 4 months old, Andrew was observed by Dr. Kawamoto, Dr. Wexler and Dr. Cahan. Years later we learned that Dr. Kawamoto (he was on Montel Williams) is the number one reconstructive plastic surgeon in the country! Dr. Wexler is a very highly regarded pediatric surgeon, serving on a team that travels to third world countries to help children with various deformities. And Dr. Cahan is thought to be the BEST pediatric neurosurgeon in the country!
They confirmed that night, that indeed Andrew had what is known as Craniosynostosis. (sometimes called craniostenosis) We would come to find that the full name for his "defect" was Right Unilateral Coronal Craniosynostosis - tongue twister I know. Basically it meant that it only effected one side of his head, being the right side and it was the Coronal area of his skull. Surgery was the only option, and the earlier the better. They would make the incision in a zig zag shape from ear to ear. This procedure helps the hair to grow over the scar better so that the kids won't have cosmetic issues later in life. They would (graphic here) pull his face off, break open the closed suture, and put it back together again (like Humpty Dumpty) with pins, mess around with his eyes a bit and then get him sewn back up. What a BLOW to brand new parents this news was. If we declined surgery, Andrew's face and head would be permanantely deformed. His brain would not be allowed enough room to grow roundly and evenly, so everything would grow to the left. It would pull on his eyes, move his features and he'd be sure to face scrutiny and bullying as he got older. I felt like we couldn't make a decision RIGHT there in the doctor's office, but what was there to think about? I had done hours of research on the internet and how much would my kid hate me if we didn't get this done for him. We were told that he would likely need a blood transfusion during surgery. And how lucky were we?? Come to find out Andrew and I have the same blood type, so I was able to donate the blood that would keep him going during this operation.

I remember staying very calm. I'm not sure if I ever cried before the surgery. We had to be in West L.A. sometime around 5 or 6 a.m. on March 20th, 2003. Andrew was about 6 months and 3 weeks old. He had just started sleeping through the night one week earlier, and the nurse Nancy Shinno informed me that it would probably be a long time after surgery before he ever did that again. After waiting for an hour and a half they got him suited up, vitals taken, papers signed and off he went. We couldn't go in the operating room at all. We literally walked to the doors of the room, and had to hand him off to a nurse and then, just pray for the best.

Andrew's surgery was a few hours long. Unfortunately we had to spend the entire time watching the newly begun Iraq war on the televisions. Not a great thing to get your baby's surgery off your mind. FINALLY, Dr. Wexler walked out to us, took off his mask and said "surgery went great!" Oh My God! I lost it. Just completely fell apart. I get teary eyed now just thinking about what a RELIEF that was. We were eventually able to visit him in the recovery room and as you can imagine, he was less than thrilled while waking up from anesthesia. Andrew was crying so hard that he had no voice left. We tried everything to calm him down. Finally I leaned down, and whispered his favorite song in his ear - The Itsy Bitsy Spider.... and it did the trick. The next few days were exhausting at best. Cory and I slept in the hospital, showered at the hospital... lived at the hospital. There were a few trying times where they were worried about him not producing enough urine and they eventually had to give him another blood transfusion (this time it wasn't mine) but he came out of it with flying colors! It was quite a long recovery process; lots of bandages and gauze and blood.

And today he's thriving as a 5 year old should! The only reason you'd know he had skull surgery is by the scar on his head - our little Jack-O-Lantern.

Pull out your magnifying glass! If you look VERY closely you will see that the right side of Andrew's head is not rounded like the Left side. We were so blessed to have a fantastic pediatrician that was able to catch the condition so early!

These are pictures in the waiting room and in the hospital crib once he was "suited up".

These next few pictures are hard to look at. This is Andrew the day of his surgery. You can see how swollen his face was and that his eyes were starting to bruise. He had multiple drains coming from his head and you can see all the lines he had in his arms.. and feet!
More brusing sneaking in around his eyes, at least his was resting comfortably.
His favorite toy at the time. Starky, if you're reading this, do you remember that?! Anyway, poor baby was attempting to get some entertainment in the hospital, but he couldn't even see.
My sweet pirate! ARRGGGH
This one needs no explanation.

Finally able to smile... and see! He was healing perfectly! Not much bruising left here!!

And now.... 5 years later (okay this was actually taken 4 years 6 months later) :


Cheeziemommie said...

That was really neat to hear the full story, must have been so weird for you to type out like that! And yay for pictures on your blog :) The surgery ones are so sad :(

binksmommy said...

WOW.. I didn't know he had that done Christina... They did a fantastic job.. never would have guessed that Andrew had any problems when he was younger. He's a very HANDSOME boy :)

Allison said...

Hello there! I just found your blog while looking up information on Dr. Wexler and Dr. Shinno who will be performing surgery on my son in a few weeks just before his 6 month bday. I too had a great pediatrician who noticed his sagittal synostosis! Thanks for your story and pictures. Do you have any advice for me?

Thanks in advance,

Megan said...

wow, what a story! thanks for sharing, I never would have even guessed andrew had any trouble as an infant, he is such a happy healthy and handsome little man!!!

Becky said...

Hi Christina! I am in the SAHM Meetup group, but I don't know that we have officially met. I saw this on you profile, and I love blogs, so I read this post. We went through a much more minor surgery when our oldest was three months old. I remember sitting in the waiting room . . . it was so hard. I can't imagine the courage it took to go through your son's surgery! It's great that you have shared the story for others to learn from and be encouraged by. Hopefully we will meet soon!

christine said...

Hi Christina, My soon will be going for surgery soon. His name is Andrew too:) I just want to know how you felt. I'm very worried is there and advice you can give me. Thanks