Katie
11-05-2006, 01:44 AM
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On December 22, 2004 our second son Vance was born. We knew from our 20 week ultrasound that he would be born with a unilateral cleft lip and possible cleft palate. I had a planned c-section so I only got a quick glance at him right after he was born. I thought he was a gorgeous baby, but something didn’t seem right. I figured it was just the cleft lip and tried not to worry about it. 4 hrs later I finally got to hold him and I knew something else was wrong. He had a big bump on his forehead, and it looked “pointy.” The doctors seemed more focused on his cleft lip and palate though. A plastic surgeon came in to look at him and told us not to worry it was “just extra skin.”
They moved him to the special care nursery and told us it was for feeding issues, but they had specialist coming into see him left and right. They ran a ton of tests on him, one of which was a CT scan. They told us that his metopic suture was partially fused, but it was nothing to be worried about. They told us to bring it up to his craniofacial surgeon that would be doing surgery on his lip, and if he thought it was necessary they could do a minor surgery to open the suture.
It wasn’t until a few days after he came home from the hospital that I looked up exactly what it meant to have a fused metopic suture. That was when the term “craniosynostosis” was introduced to me. I was terrified by everything that I read. My husband is in the Army and he was about to deploy to <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:country-region><st1:place>Iraq</st1:place></st1:country-region> for the second time, so the boys (our oldest son, David, was 22 months at the time) and I were getting ready to move back to <st1:State><st1:place>Ohio</st1:place></st1:State> to be with my family. So I had to wait until February for my fears to be confirmed. Both the plastic surgeon and neurosurgeon diagnosed him with Trigonocephaly just by looking at him.
He had another CT scan and we waited for a surgery date. We hit a few road blocks with getting a surgery date, but finally after about 3 ½ months we got one, <st1:date Year="2005" Day="23" Month="8">Aug. 23, 2005</st1:date>! Thank goodness Brian was able to take his 2 weeks R&R leave to come home for the surgery.
I was a wreck the day of the surgery! I loved the way he looked and I was afraid of how different he would be after. He had his lip repair at 3 months, and I felt like they gave me a different baby back. I loved the new look, but really missed “my baby.” I felt like I kept “trading in” this beautiful baby that I was blessed with for a baby that would be accepted as “normal” by society. I knew we were doing what was best for him, but it was hard.
The surgery lasted about 6 hrs, and he did wonderful. He did need some of the blood that I had donated, but the Dr.’s said he didn’t need as much as they usually see. I got to hold him not too long after he came out of recovery. He started drinking some pedialyte about an hour after he woke up and was drinking formula by the next morning. Not even 12 hrs later he was already smiling at us. Even when his eyes were completely swelled shut he kept on smiling! He was so amazing through the whole thing, I just couldn’t believe it!
We got to go home just 4 days after the surgery! It took about 2 weeks for the major swelling to go down, and we could really start seeing all of his “hardware.” It kind of freaked me out at first, but the doctors reassured us that it was all normal. In November Vance had another surgery to fix his cleft palate. It turned out to be worse than I had ever imagined the cranio surgery to be!
He had some uncontrollable bleeding and ended up in PICU for 5 nights heavily sedated and on a respirator. He needed two blood transfusions that time. He had quite a rough first year but never lost his smile. He continues to be a true inspiration to me and everyone that meets him. They are convinced there is a syndrome to label him with, but can’t seem to find one. He is almost one year post op and is developmentally on track and doing great!!<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
On December 22, 2004 our second son Vance was born. We knew from our 20 week ultrasound that he would be born with a unilateral cleft lip and possible cleft palate. I had a planned c-section so I only got a quick glance at him right after he was born. I thought he was a gorgeous baby, but something didn’t seem right. I figured it was just the cleft lip and tried not to worry about it. 4 hrs later I finally got to hold him and I knew something else was wrong. He had a big bump on his forehead, and it looked “pointy.” The doctors seemed more focused on his cleft lip and palate though. A plastic surgeon came in to look at him and told us not to worry it was “just extra skin.”
They moved him to the special care nursery and told us it was for feeding issues, but they had specialist coming into see him left and right. They ran a ton of tests on him, one of which was a CT scan. They told us that his metopic suture was partially fused, but it was nothing to be worried about. They told us to bring it up to his craniofacial surgeon that would be doing surgery on his lip, and if he thought it was necessary they could do a minor surgery to open the suture.
It wasn’t until a few days after he came home from the hospital that I looked up exactly what it meant to have a fused metopic suture. That was when the term “craniosynostosis” was introduced to me. I was terrified by everything that I read. My husband is in the Army and he was about to deploy to <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:country-region><st1:place>Iraq</st1:place></st1:country-region> for the second time, so the boys (our oldest son, David, was 22 months at the time) and I were getting ready to move back to <st1:State><st1:place>Ohio</st1:place></st1:State> to be with my family. So I had to wait until February for my fears to be confirmed. Both the plastic surgeon and neurosurgeon diagnosed him with Trigonocephaly just by looking at him.
He had another CT scan and we waited for a surgery date. We hit a few road blocks with getting a surgery date, but finally after about 3 ½ months we got one, <st1:date Year="2005" Day="23" Month="8">Aug. 23, 2005</st1:date>! Thank goodness Brian was able to take his 2 weeks R&R leave to come home for the surgery.
I was a wreck the day of the surgery! I loved the way he looked and I was afraid of how different he would be after. He had his lip repair at 3 months, and I felt like they gave me a different baby back. I loved the new look, but really missed “my baby.” I felt like I kept “trading in” this beautiful baby that I was blessed with for a baby that would be accepted as “normal” by society. I knew we were doing what was best for him, but it was hard.
The surgery lasted about 6 hrs, and he did wonderful. He did need some of the blood that I had donated, but the Dr.’s said he didn’t need as much as they usually see. I got to hold him not too long after he came out of recovery. He started drinking some pedialyte about an hour after he woke up and was drinking formula by the next morning. Not even 12 hrs later he was already smiling at us. Even when his eyes were completely swelled shut he kept on smiling! He was so amazing through the whole thing, I just couldn’t believe it!
We got to go home just 4 days after the surgery! It took about 2 weeks for the major swelling to go down, and we could really start seeing all of his “hardware.” It kind of freaked me out at first, but the doctors reassured us that it was all normal. In November Vance had another surgery to fix his cleft palate. It turned out to be worse than I had ever imagined the cranio surgery to be!
He had some uncontrollable bleeding and ended up in PICU for 5 nights heavily sedated and on a respirator. He needed two blood transfusions that time. He had quite a rough first year but never lost his smile. He continues to be a true inspiration to me and everyone that meets him. They are convinced there is a syndrome to label him with, but can’t seem to find one. He is almost one year post op and is developmentally on track and doing great!!<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>