amizzle
06-10-2008, 12:52 PM
****Slideshow to come with lots & lots of before and afters****
***WARNING: the pictures in this are HUGE, I will make them smaller as soon as I can*****
We were thrilled when our twins were born September 28, 2007.
The babies were born via c-section after pushing for over 2 hours. Carlee was born exactly 1 minute before Carson.
The moment we saw Carson we noticed his head. It was funny shaped, like a football. His twin sisters’ head was perfect and round. Carson’s head shape seemed even more obvious compared to his sisters. Every nurse reassured us that Carson’s head was shaped that way because he was breach part of my pregnancy.
http://i200.photobucket.com/albums/aa174/amizzle23/V_049-1.jpg
Carlee & Carson (my ALL time favorite picture)
Our first visit with the pediatrician in the hospital was spent focused on Carson’s head (he was 1 day old). The doctor said “ Lets be honest his head is weird.” And you know what his head was weird.
At our 1 week check up we again spoke about Carson’s head. The doctor said we will keep an eye on it and hopefully it will round out. He said best case it will round out on its own, and worse case he will need surgery. We weren’t sure what we were dealing with but we weren’t ready to deal with “worse case.”
At our 2 week checked we learned that Carson didn’t have a soft spot (how did we not notice that?). We knew he had a ridge down the top of head. We knew that his temples were narrowed. We knew that he was ALWAYS fussy. We didn’t know what craniosynostosis was but we were soon going to find out. Our doctor advised us to schedule a CT scan, since Carson’s head did not seem to be getting any better.
We waited naively for our CT scan. Not even knowing what they were checking for, or what the problem could be. My Aunt came over one night and said she had googled “no soft spot” and showed us some websites she had come across. From that night on I was online constantly (well as much as I could be on, with 2 newborn babies).
By the time we got our CT scan we knew what the word craniosynostosis meant (well sort of), and when we saw it written on our referral form we had an idea what was in store. Deep down inside we knew what the results would be, but it still was an anxious wait for our Diagnosis. On October 30st, 2007 (Carson was just over 4 weeks old) we had an official diagnosis. His sagittal suture had fused prematurely, he had craniosynostosis.
One of the PA’s in our pediatrician’s office had a daughter who also had cranio. We went into the office the next day and spoke with him and our doctor about surgery (CVR). They told us what they knew and general details about surgery. They never told us about any other surgery options.
We scheduled to meet with the NS at Primary Children’s Hospital in Salt Lake City. They could not get us in for almost 2 months. While we waited for our consult, we continued to do research online, talk to every one knew in the medical field, and spread the word of Carson’s diagnosis to family and friends.
We still had about 2 months before our consult with the NS in Salt Lake. We started looking into the endoscopic procedure. It seemed a little scary. It hadn’t been around as long, we didn’t know which doctors even did this type of surgery. We found out they just started doing the surgery in Salt Lake (like 15 cases) and that was scary too. For the next month or so we dabbled in information about the endoscopic surgery but were leaning towards the CVR.
While waiting for our consult, we received information from a friend of a friend about another option for surgery. One of his sons (who has twins & triplets!) also had cranio and they did a different surgery (endo strip) then the one our pediatrician was talking about (CVR). We then started to research the endoscopic assisted strip craniectomy.
Eventually we called the “friend of a friend”. He had done his research, he had the financial resources to go to the moon and the back to do what was best for his kid, and he chose to do surgery with Dr. Jimenez & Barone (the pioneers of the endoscopic assisted strip craniectomy). This was on a Friday afternoon.
We had been in contact with Dr. Jimenez nurse asking a few questions for the past few weeks. There we definitely positives to doing the endoscopic surgery (1 hour surgery time, no blood transfusion, smaller scar, shorter hospital stay) but there were definitely negatives also (helmet for 1 year, traveling, newer procedure).
I had been majorly stressing about which surgery to do. We were having the hardest time deciding what was “right” for us and our little boy. On that day, it FINALLY just felt right. We KNEW what we should do, and we did it.
Literally 3 days later we were off to Texas to have surgery. Dr. Jimenez nurses got our insurance approved lightening fast, we packed our bags and left. We told each other that it didn’t mean we HAD to do this surgery just because we were in Texas. If we didn’t feel 100% right about it we would just head back, and wait to meet with the NS in Salt Lake.
We were completely amazed by Dr. Jimenez & his team. We met with him for about an hour and a half that first day. He explained every single detail of EVERYTHING with us. He showed us countless pictures, answered our relentless questions, and made us feel (for the first time in months) completely at ease. We decided to go ahead with surgery with Dr. Jimenez (NS) & his wife Dr. Barone (PS).
Carson had surgery on December 6th, 2007; he was just 10 weeks old. I had prepared myself for this day since we found out about Carson’s cranio. I KNEW I was going to be a mess, and I had every right to be. We handed Carson off a little before 11am, and I did NOT cry. I cry now when I think about it, but I did not cry. I ABSOLUTELY and COMPLETELY trusted Dr. Jimenez, Barone and their whole team. I felt relieved that surgery day had come, and would shortly be over.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01067.jpg
Handing Off Carson to Nurse Cheryl
Dr. Jimenez & Barone made the first incision at 11:34 am and exactly 1 hour and 2 minutes later, it was all OVER!
We met with the Doctors who told us how great surgery had gone, and they presented us with a certificate with the little piece of Carson’s hair glued to it.
We then immediately walked up to the PICU to be with our little boy. He definitely was upset, but it was better then I had imaged. Dr. Jimenez tried to explain to us that the results would be immediate, and they sure were. Carson looked like a brand new boy. He had 2 itty-bitty band-aid on his head, an IV, and a heart monitor and that was it!
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01079.jpg
Immediately After Surgery
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01074.jpg
Daddy & Carson After Surgery
The second we walked into the room I was able to hold him and feed him some pedialyte. He was definitely upset, but being able to hold him made it all okay. For the next 10 hours or so Carson was pretty uncomfortable. He cried and woke up often. We held him and laid by him, and amazingly at about 1 am he was all of a sudden happy.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01088.jpg
About 10 Hours After Surgery (No Longer Upset)
We took turns sleeping in Carson’s room, and around 9 am (less than 24 hours since surgery) we were discharged. Carson looked great, and was doing great. We left the hospital with baby Tylenol, and a brand new boy.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01120.jpg
1 Day Post Op
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01140.jpg
2 Days Post Op
A few days later we got Carson’s helmet (I secretly thought it was adorable, I still do actually). For some reason I was fixated on the helmet being such a nightmare, and so embarrassing. It hasn’t been either. The helmet does not bother Carson at all (he has had it over 6 months now). It also doesn’t bother me. It is my way of spreading the word about cranio. I can promise you every single day at least 5 people learn “why he is wearing the helmet”.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01149.jpg
First helmet (6 days Post Op)
We absolutely love Dr. Jimenez & Barone, they will always have a special place in our hearts for “fixing” our sweet boy.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01617.jpg
Mom, Carson & Dr. Jimenez @ 6 Week Check
We were and still are amazed at how “easy” it all was. Now I am not saying by any means it was easy(It was NOT, believe me I was a wreck most of the time). But we don’t feel like it couldn’t of gone any better. Surgery and recovery went extremely well, and Jason & I were able emotionally to handle it all. What more could we of asked for?
We are just over 6 months post op. Carson is healthy and happy. If you saw him helmetless you would never know the road he has traveled in his short little life.
http://i200.photobucket.com/albums/aa174/amizzle23/V_111.jpg
Carson 8 Months Old
(He still has his helmet, just not in this picture. He will wear his helmet till December 2008)
One random fact: Carson was an extremely fussy baby. We were always trying to figure out if he had gas, or a wet diaper, or what. I would never let myself think it was a “headache” but it had to be. Carson has been a “new” boy. He has not had one of those fussy spells since he had surgery.
*****Slideshow to come, with lots & lots of before and afters******
***I will also downsize the pictures, sorry they are SO big*****
***WARNING: the pictures in this are HUGE, I will make them smaller as soon as I can*****
We were thrilled when our twins were born September 28, 2007.
The babies were born via c-section after pushing for over 2 hours. Carlee was born exactly 1 minute before Carson.
The moment we saw Carson we noticed his head. It was funny shaped, like a football. His twin sisters’ head was perfect and round. Carson’s head shape seemed even more obvious compared to his sisters. Every nurse reassured us that Carson’s head was shaped that way because he was breach part of my pregnancy.
http://i200.photobucket.com/albums/aa174/amizzle23/V_049-1.jpg
Carlee & Carson (my ALL time favorite picture)
Our first visit with the pediatrician in the hospital was spent focused on Carson’s head (he was 1 day old). The doctor said “ Lets be honest his head is weird.” And you know what his head was weird.
At our 1 week check up we again spoke about Carson’s head. The doctor said we will keep an eye on it and hopefully it will round out. He said best case it will round out on its own, and worse case he will need surgery. We weren’t sure what we were dealing with but we weren’t ready to deal with “worse case.”
At our 2 week checked we learned that Carson didn’t have a soft spot (how did we not notice that?). We knew he had a ridge down the top of head. We knew that his temples were narrowed. We knew that he was ALWAYS fussy. We didn’t know what craniosynostosis was but we were soon going to find out. Our doctor advised us to schedule a CT scan, since Carson’s head did not seem to be getting any better.
We waited naively for our CT scan. Not even knowing what they were checking for, or what the problem could be. My Aunt came over one night and said she had googled “no soft spot” and showed us some websites she had come across. From that night on I was online constantly (well as much as I could be on, with 2 newborn babies).
By the time we got our CT scan we knew what the word craniosynostosis meant (well sort of), and when we saw it written on our referral form we had an idea what was in store. Deep down inside we knew what the results would be, but it still was an anxious wait for our Diagnosis. On October 30st, 2007 (Carson was just over 4 weeks old) we had an official diagnosis. His sagittal suture had fused prematurely, he had craniosynostosis.
One of the PA’s in our pediatrician’s office had a daughter who also had cranio. We went into the office the next day and spoke with him and our doctor about surgery (CVR). They told us what they knew and general details about surgery. They never told us about any other surgery options.
We scheduled to meet with the NS at Primary Children’s Hospital in Salt Lake City. They could not get us in for almost 2 months. While we waited for our consult, we continued to do research online, talk to every one knew in the medical field, and spread the word of Carson’s diagnosis to family and friends.
We still had about 2 months before our consult with the NS in Salt Lake. We started looking into the endoscopic procedure. It seemed a little scary. It hadn’t been around as long, we didn’t know which doctors even did this type of surgery. We found out they just started doing the surgery in Salt Lake (like 15 cases) and that was scary too. For the next month or so we dabbled in information about the endoscopic surgery but were leaning towards the CVR.
While waiting for our consult, we received information from a friend of a friend about another option for surgery. One of his sons (who has twins & triplets!) also had cranio and they did a different surgery (endo strip) then the one our pediatrician was talking about (CVR). We then started to research the endoscopic assisted strip craniectomy.
Eventually we called the “friend of a friend”. He had done his research, he had the financial resources to go to the moon and the back to do what was best for his kid, and he chose to do surgery with Dr. Jimenez & Barone (the pioneers of the endoscopic assisted strip craniectomy). This was on a Friday afternoon.
We had been in contact with Dr. Jimenez nurse asking a few questions for the past few weeks. There we definitely positives to doing the endoscopic surgery (1 hour surgery time, no blood transfusion, smaller scar, shorter hospital stay) but there were definitely negatives also (helmet for 1 year, traveling, newer procedure).
I had been majorly stressing about which surgery to do. We were having the hardest time deciding what was “right” for us and our little boy. On that day, it FINALLY just felt right. We KNEW what we should do, and we did it.
Literally 3 days later we were off to Texas to have surgery. Dr. Jimenez nurses got our insurance approved lightening fast, we packed our bags and left. We told each other that it didn’t mean we HAD to do this surgery just because we were in Texas. If we didn’t feel 100% right about it we would just head back, and wait to meet with the NS in Salt Lake.
We were completely amazed by Dr. Jimenez & his team. We met with him for about an hour and a half that first day. He explained every single detail of EVERYTHING with us. He showed us countless pictures, answered our relentless questions, and made us feel (for the first time in months) completely at ease. We decided to go ahead with surgery with Dr. Jimenez (NS) & his wife Dr. Barone (PS).
Carson had surgery on December 6th, 2007; he was just 10 weeks old. I had prepared myself for this day since we found out about Carson’s cranio. I KNEW I was going to be a mess, and I had every right to be. We handed Carson off a little before 11am, and I did NOT cry. I cry now when I think about it, but I did not cry. I ABSOLUTELY and COMPLETELY trusted Dr. Jimenez, Barone and their whole team. I felt relieved that surgery day had come, and would shortly be over.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01067.jpg
Handing Off Carson to Nurse Cheryl
Dr. Jimenez & Barone made the first incision at 11:34 am and exactly 1 hour and 2 minutes later, it was all OVER!
We met with the Doctors who told us how great surgery had gone, and they presented us with a certificate with the little piece of Carson’s hair glued to it.
We then immediately walked up to the PICU to be with our little boy. He definitely was upset, but it was better then I had imaged. Dr. Jimenez tried to explain to us that the results would be immediate, and they sure were. Carson looked like a brand new boy. He had 2 itty-bitty band-aid on his head, an IV, and a heart monitor and that was it!
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01079.jpg
Immediately After Surgery
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01074.jpg
Daddy & Carson After Surgery
The second we walked into the room I was able to hold him and feed him some pedialyte. He was definitely upset, but being able to hold him made it all okay. For the next 10 hours or so Carson was pretty uncomfortable. He cried and woke up often. We held him and laid by him, and amazingly at about 1 am he was all of a sudden happy.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01088.jpg
About 10 Hours After Surgery (No Longer Upset)
We took turns sleeping in Carson’s room, and around 9 am (less than 24 hours since surgery) we were discharged. Carson looked great, and was doing great. We left the hospital with baby Tylenol, and a brand new boy.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01120.jpg
1 Day Post Op
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01140.jpg
2 Days Post Op
A few days later we got Carson’s helmet (I secretly thought it was adorable, I still do actually). For some reason I was fixated on the helmet being such a nightmare, and so embarrassing. It hasn’t been either. The helmet does not bother Carson at all (he has had it over 6 months now). It also doesn’t bother me. It is my way of spreading the word about cranio. I can promise you every single day at least 5 people learn “why he is wearing the helmet”.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01149.jpg
First helmet (6 days Post Op)
We absolutely love Dr. Jimenez & Barone, they will always have a special place in our hearts for “fixing” our sweet boy.
http://i200.photobucket.com/albums/aa174/amizzle23/DSC01617.jpg
Mom, Carson & Dr. Jimenez @ 6 Week Check
We were and still are amazed at how “easy” it all was. Now I am not saying by any means it was easy(It was NOT, believe me I was a wreck most of the time). But we don’t feel like it couldn’t of gone any better. Surgery and recovery went extremely well, and Jason & I were able emotionally to handle it all. What more could we of asked for?
We are just over 6 months post op. Carson is healthy and happy. If you saw him helmetless you would never know the road he has traveled in his short little life.
http://i200.photobucket.com/albums/aa174/amizzle23/V_111.jpg
Carson 8 Months Old
(He still has his helmet, just not in this picture. He will wear his helmet till December 2008)
One random fact: Carson was an extremely fussy baby. We were always trying to figure out if he had gas, or a wet diaper, or what. I would never let myself think it was a “headache” but it had to be. Carson has been a “new” boy. He has not had one of those fussy spells since he had surgery.
*****Slideshow to come, with lots & lots of before and afters******
***I will also downsize the pictures, sorry they are SO big*****