mom to cranio twins
09-24-2008, 06:08 PM
CARSON:
Crainosynostosis; Sagittal Synostosis; Cranial vault repair (CVR) - 6 hours and 15 min. Total hospital stay- 4 days. Age: 4 days shy of 9 months. Date: August 11, 2006. Second CVR (refusion of bones) Aug 27th, 2008. Age 2 yrs 9 months
COOPER:
Craniosynostosis; Sagittal Synostosis; Metopic Synostosis - did not repair metopic area due the fact that his skull was way to thin - would have caused damage to the dura.
Cranial Vault Repair (CVR) - 6 hours. Total hospital stay - 4 days. Age: 10 days shy of 10 months. Date: September 6th, 2006
Hi -
I have been asked to post our story here because it is a tad bit unique.....I just don't know where to start.
I gave birth to Carson and Cooper via c-section on November 15, 2005. They were born 9 weeks premature and spent 26/39 days in the NICU.
Carson, my little work horse spent 26 days and worked her tail bone off to get out of there. At birth she weighed 4lbs 0 oz and was 17 in long.
Cooper, my ladies man, opted to hang out with the nurses a bit long and spent 39 days. At birth he weighed 3 lbs 13 oz and 16 3/4 in long. He came home Christmas Eve day 2005.
After both kids were released from the hospital we noticed that their heads were both abit "out of shape". They were starting to look like boats. Bossing out of the front and the back.
At 4 months, we had a home health nurse come to our house to weigh, and measeure each child. This way we could protect them from RSV and whatever was floating around the doctors office.
As she was measuring Carson's head, she noticed that Carson's head was way off the preemie chart and was close to being off the regular infant chart. She looked at me and said " I believe you daughter has something called Craniosynostosis". I had never heard that term before and had gotten very frightened.
The next day, I had an appointment with our pediatrician. Up until this point, she had thought that Carson's head shape was due to her prematurity and had thought it would have corrected it's self.
At that point, she directed me to Dr. John Jensen, a plastic surgeon at Children's hospital of Wisconsin. With in a few days, we were able to get in with Jensen. We had X-rays, and a CT, done. It was apparent to Dr. Jensen that Carson did indeed have sagital synostosis. Carson was instantly scheduled for surgery - August 11th 2006.
At Cooper's 5 month appointment with the home health nurse, we again listen to her tell us that Coop's head was now also off both charts and that she believed that he had craniosynostosis as well. At that time, my husband and I were devistated. Here we had just gotten the news that Carson was going to need skull reconstruction, and now Cooper too? It was too much to handle all at one time.
So again, we saw our pediatrician who sent us on our way to Dr. Jensen, who did an X-ray, and a CT, and confirmed that Cooper not only had sagital synostosis, but metopic too. He was scheduled for surgery on September 6th, 2006.
My husband and I had a hard time swallowing that both of our "not even a year old" babies would be having major surgery.
After a few days, I decided that I had to educate myself. I researched, and researched, and did some more research. A few days of researchin, I came across this capps site and thought I had landed in heaven. Some place to ask questions and get answers. I even asked for a mentor. Which was the best thing I could of done. It was so nice to have someone at my finger tips to ask questions too.
Carson's surgery came, and things went well. For me, the hardest part was to hand her over to the operating team. I shead a few tears and they renesured me that things would go just fine. And that they did. She was in surgery for a little over 6 hours (which felt like days). When the surgery was over, we got to see her on her way to the PICU. She was the most beautiful thing I had ever laid eyes on. I was just so relieved she was out.
The first 48 hours were a struggle for us. It was hard to see our child in pain, and so swollen. Once we hit the 72 hour mark I knew we had "turned the corner". Her drains were out, her turbin was off and she looked great!!!
We went home after 4 days.
After a few weeks of recovery with Carson, it was time to head back down to Milwaukee for Cooper's surgery.
With Coop, they were going to fix his sagital and then try to repair his metopic as well.
Once again, I struggled with handing him over to the team, but remembered that Carson did just fine, and that I needed to stay strong.
He was in surgery for a total of 6 hours. After surgery, we got o give him a smooch on his way to the PCIU.
After Cooper left, we stayed and chatted with Dr. Jensen a bit. He mentioned to us that everything went well except that he was not able to repair his metopic area. Because Cooper was preemie, the bone in his forehead was much to thin to work on. He told us that he did not want to take a chance on putting a hole into Cooper's dura. THANKS Dr. J! So Cooper's metopic ridge is still unrepaired.
Our hospital stay with Cooper was the same as with Carson - pretty stressful, but uneventful.
For the next 1 1/2, Dr. Jensen has been watching the kiddos and watching how the holes are closing. We have had a few scares, but nothing that has needed repair.
In January of '08 we had been noticing that Carson had a bump just about 1/2 inch behind her hairline at the top of her head.
She had an ICP - intercranial pressure monitor placed in June, and the results came back that she has high ICP. (which cause her brain to push her skull area outward). She also had a repeat CT done which confirmed to Dr. Jensen that her sagital area had started to refuse again. So, surgery once again was scheduled.
Carson underwent her 2nd CVR on Aug. 27th '08. She did very well and recovered faster than anyone had thought.
We are sure hoping that this will be our LAST CVR.
Besides cranio and high ICP, Carson also has Chiari Malformation, which is a rare brain disease. Our older set twins also have Chiari. Riley, our 5yr old daughter, just had her brain decompression surgery this past Feb. In Chicago. Not to scare you, but the surgical team left a sponge behind. Shortly after they noticed it, she went back into surgery to have it removed.
We are waiting to see if Carson will also be in need of a shunt because of her high ICP, and if she will also need brain decompression.
__________________
Cindy ~ mom to 2 sets of b/g twins
Riley: 5 yrs old ~ Chiari Malformation , decompressed on Feb 13th 2008
Keegan: 5 yrs old ~ Chiari Malformation, not repaired
Carson (sagittal) CVR 8.11.06 & 8.27.08, Chiari Malformation, and high ICP
Cooper - (sagittal) CVR 9.6.06, and unrepaired metopic
Email: ladybug_wi@yahoo.com
http://www.coletwins.blogspot.com
www.caringbridge.org/carsoncole
Crainosynostosis; Sagittal Synostosis; Cranial vault repair (CVR) - 6 hours and 15 min. Total hospital stay- 4 days. Age: 4 days shy of 9 months. Date: August 11, 2006. Second CVR (refusion of bones) Aug 27th, 2008. Age 2 yrs 9 months
COOPER:
Craniosynostosis; Sagittal Synostosis; Metopic Synostosis - did not repair metopic area due the fact that his skull was way to thin - would have caused damage to the dura.
Cranial Vault Repair (CVR) - 6 hours. Total hospital stay - 4 days. Age: 10 days shy of 10 months. Date: September 6th, 2006
Hi -
I have been asked to post our story here because it is a tad bit unique.....I just don't know where to start.
I gave birth to Carson and Cooper via c-section on November 15, 2005. They were born 9 weeks premature and spent 26/39 days in the NICU.
Carson, my little work horse spent 26 days and worked her tail bone off to get out of there. At birth she weighed 4lbs 0 oz and was 17 in long.
Cooper, my ladies man, opted to hang out with the nurses a bit long and spent 39 days. At birth he weighed 3 lbs 13 oz and 16 3/4 in long. He came home Christmas Eve day 2005.
After both kids were released from the hospital we noticed that their heads were both abit "out of shape". They were starting to look like boats. Bossing out of the front and the back.
At 4 months, we had a home health nurse come to our house to weigh, and measeure each child. This way we could protect them from RSV and whatever was floating around the doctors office.
As she was measuring Carson's head, she noticed that Carson's head was way off the preemie chart and was close to being off the regular infant chart. She looked at me and said " I believe you daughter has something called Craniosynostosis". I had never heard that term before and had gotten very frightened.
The next day, I had an appointment with our pediatrician. Up until this point, she had thought that Carson's head shape was due to her prematurity and had thought it would have corrected it's self.
At that point, she directed me to Dr. John Jensen, a plastic surgeon at Children's hospital of Wisconsin. With in a few days, we were able to get in with Jensen. We had X-rays, and a CT, done. It was apparent to Dr. Jensen that Carson did indeed have sagital synostosis. Carson was instantly scheduled for surgery - August 11th 2006.
At Cooper's 5 month appointment with the home health nurse, we again listen to her tell us that Coop's head was now also off both charts and that she believed that he had craniosynostosis as well. At that time, my husband and I were devistated. Here we had just gotten the news that Carson was going to need skull reconstruction, and now Cooper too? It was too much to handle all at one time.
So again, we saw our pediatrician who sent us on our way to Dr. Jensen, who did an X-ray, and a CT, and confirmed that Cooper not only had sagital synostosis, but metopic too. He was scheduled for surgery on September 6th, 2006.
My husband and I had a hard time swallowing that both of our "not even a year old" babies would be having major surgery.
After a few days, I decided that I had to educate myself. I researched, and researched, and did some more research. A few days of researchin, I came across this capps site and thought I had landed in heaven. Some place to ask questions and get answers. I even asked for a mentor. Which was the best thing I could of done. It was so nice to have someone at my finger tips to ask questions too.
Carson's surgery came, and things went well. For me, the hardest part was to hand her over to the operating team. I shead a few tears and they renesured me that things would go just fine. And that they did. She was in surgery for a little over 6 hours (which felt like days). When the surgery was over, we got to see her on her way to the PICU. She was the most beautiful thing I had ever laid eyes on. I was just so relieved she was out.
The first 48 hours were a struggle for us. It was hard to see our child in pain, and so swollen. Once we hit the 72 hour mark I knew we had "turned the corner". Her drains were out, her turbin was off and she looked great!!!
We went home after 4 days.
After a few weeks of recovery with Carson, it was time to head back down to Milwaukee for Cooper's surgery.
With Coop, they were going to fix his sagital and then try to repair his metopic as well.
Once again, I struggled with handing him over to the team, but remembered that Carson did just fine, and that I needed to stay strong.
He was in surgery for a total of 6 hours. After surgery, we got o give him a smooch on his way to the PCIU.
After Cooper left, we stayed and chatted with Dr. Jensen a bit. He mentioned to us that everything went well except that he was not able to repair his metopic area. Because Cooper was preemie, the bone in his forehead was much to thin to work on. He told us that he did not want to take a chance on putting a hole into Cooper's dura. THANKS Dr. J! So Cooper's metopic ridge is still unrepaired.
Our hospital stay with Cooper was the same as with Carson - pretty stressful, but uneventful.
For the next 1 1/2, Dr. Jensen has been watching the kiddos and watching how the holes are closing. We have had a few scares, but nothing that has needed repair.
In January of '08 we had been noticing that Carson had a bump just about 1/2 inch behind her hairline at the top of her head.
She had an ICP - intercranial pressure monitor placed in June, and the results came back that she has high ICP. (which cause her brain to push her skull area outward). She also had a repeat CT done which confirmed to Dr. Jensen that her sagital area had started to refuse again. So, surgery once again was scheduled.
Carson underwent her 2nd CVR on Aug. 27th '08. She did very well and recovered faster than anyone had thought.
We are sure hoping that this will be our LAST CVR.
Besides cranio and high ICP, Carson also has Chiari Malformation, which is a rare brain disease. Our older set twins also have Chiari. Riley, our 5yr old daughter, just had her brain decompression surgery this past Feb. In Chicago. Not to scare you, but the surgical team left a sponge behind. Shortly after they noticed it, she went back into surgery to have it removed.
We are waiting to see if Carson will also be in need of a shunt because of her high ICP, and if she will also need brain decompression.
__________________
Cindy ~ mom to 2 sets of b/g twins
Riley: 5 yrs old ~ Chiari Malformation , decompressed on Feb 13th 2008
Keegan: 5 yrs old ~ Chiari Malformation, not repaired
Carson (sagittal) CVR 8.11.06 & 8.27.08, Chiari Malformation, and high ICP
Cooper - (sagittal) CVR 9.6.06, and unrepaired metopic
Email: ladybug_wi@yahoo.com
http://www.coletwins.blogspot.com
www.caringbridge.org/carsoncole