Momof2Boys
01-10-2008, 12:32 AM
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We found out that something was wrong during one of the ultrasounds at around 25 weeks pregnant. The midwife referred us to a fetal specialist and he told us that the baby may have a large misshaped head, it could be just normal or it could be craniosynostosis. Right now the bones were too soft to know for sure but they will monitor him every month for cranial pressure. The next visit we decided to do a fetal MRI to have a clearer image and it showed nothing major was wrong with his brain but they were still unable to tell if the bones had fused. The next visit was going to give us a shock. At 36 weeks was a routine ultrasound to check for pressure and talk about possible C-section. The specialist came in and we decided that a C-section was our best option since they still were unsure what was going on with the baby’s head. Then he goes on to say that we should see if we could delivery him this week incase he needs medical attention sooner than later. They wanted to do an anmenio (sp) that day to see if his lungs were mature enough to deliver in four days. The neurosurgeon was called and he suggested that if the baby was not showing any signs of trouble then they could wait a few weeks. However, the ultrasound did show that the umbilical cord was wrapped around the baby’s neck. At that point I got scared and decided to do the anmenio (which everyone lied and it hurts!), we figure if he is born early he could only benefit from any medical attention he does need plus I would not be worrying about the cord being around his neck for the next 3 weeks. *Which a little info from the specialist, they do see this happen during the ultrasounds and never usual say anything to the mother since normally during birth it does not cause any harm.
The test showed his lungs were mature and it was up to us when to do the C-section. Right at 37 weeks (consider full term) on May 1, 2007 Justin Alan was born by C-section. When they pulled him out of me and hearing him cry I was so relieved and tears just started rolling down. Justin had a little flattening on the right back side of his head but it was barely noticeable and you could feel a ridge on the back. We were lucky to have such wonderful doctors during the pregnancy and they had lined us up with a Neurosurgeon who saw Justin at the hospital. Justin’s tone was low but he and was doing great and we went home after 3 days.
Our first visit with the NS was two weeks after Justin was born. He still was unsure if the bones had fused or if they just overlapped from being smashed inside of me. We were hoping for overlapping and we think the pediatrician thought the same thing. At one month Justin had a 3D CT scan done. He did great during the scan. I fed him a bottle and he was perfectly still. The scan did show that the oppipital bone did fuse on the right side which we later found out was the Lambdoidal suture – one of the rarest types of cranio. We did not think too much about his cranio between the ages of one to three months since Justin became colicky and we were doing our very best to help him and remain sane ourselves. At two months the pediatrician put Justin on Axid for reflux which helped the colic somewhat and we put him on Nutramigen formula. The spitting up/vomit was horrible, the naps never more than 20 minutes, and he would sleep the best at night in his car seat. We were always afraid that he was having pressure in his head but the doctors never seemed too concerned. Justin’s head shape did get worse between the ages of 2-3 months. His right side of his forehead was bulging slightly, right eye was smaller than the left, the right ear was down and more forward than the left, and the left back side of his head started to have an egg shape affect. From the research online they called it asymmetrical, which is exactly what it looked like; his head shape was growing from the right forehead to the left back of his skull. He also started to have a tilt to his head since the left side was overcompensating for his brain growth. Family and friends did not notice the difference in his appearance but months passed they could slowly see the affects cranio was having. At four months we met with the NS and the craniofacial surgeon. Justin’s head shape was getting worse and it would only get worse. Since Lambdoidal suture fusing early is rare they really don’t know the affects if not corrected. He was already showing signs of delay and began physical therapy to strengthen him up before surgery. He also saw an ophthalmologist to check his eyes for any sign of pressure which he had passed.
Surgery was decided to be done when he was five months old which was the longest wait of our lives. The night before surgery was difficult and we doubted ourselves if we are making the right decision putting him through such surgery. He was so happy and his appearance was not bad, he looked perfect to us. Then we told ourselves that we don’t know how bad his appearance will be if not corrected and what type of delays or cranial pressure could happen. The advantage of doing it so early will not only help correct the shape of his head but he will not remember anything later until we show him pictures and tell him his story with craniosynostosis.
Surgery was scheduled for October 22, 2007 – Justin was 5 ½ months old.
Day 1 - Handing him over to the nurse to take him back to the operating room was the hardest moment but hearing the words after 3 ½ hours of surgery from the doctors’ mouth that he did great were the most wonderful words. During surgery, the NS and craniofacial surgeon said that they could see his brain through the bones in his skull on the right side. The bones had thin out so much from his brain trying to grow but could not grow normally. Knowing that made us feel so much better on the decision to have the surgery for Justin and in good timing. I could not imagine what could have happened if it was not corrected, especially if he had fallen on his head. He is a very lucky little boy. The craniofacial surgeon also tried something new; she switched the bones, placing the bad side on the left side of his skull and good side where he was having so much pressure on the right. He did need some blood during the surgery and possibly more later. After almost two hours in recovery we finally were able to see Justin. Seeing your baby with tubes and in so much pain was heart braking. He was given some morphine but he was still very uncomfortable. Once he was transported to the PICU room, he looked so much more comfortable with the morphine and Tylenol given every as needed.
Day 2 -The next morning at 4 am his right eye was swollen shut and he was drinking small amounts of juice. By 9 am Justin did not need any more blood and was released to the step down unit once a room became available (which one never did and we stayed in PICU the entire time). All IV’s came out and was just connected to vital monitors which became annoying to us and to Justin. At 10 am I was able to hold Justin for the first time. I was nervous since the swelling was getting worse and I was afraid of hurting him. It was the first time holding him since handing him over to the nurse. The bandage also came off that morning and the incision looked good but was still oozing some blood. Throughout the day he was holding down his juice and formula very well and doing great. The morphine and Tylenol was going longer between dosages. By 7 pm the left eye had swollen shut.
Day 3 – peak of swelling, he did not look like himself. His skin was so tight and he looked like he had gained 10 lbs. That afternoon he had his first smile since the surgery and by 8 pm his eyes started to open.
Day 4 – Both eyes were slowly opening and the swelling had gone down. He was no longer on Morphine and the pain was starting to upset him. Justin was released by the afternoon and sent home with just Tylenol. It was scary bringing him home since we did not have the doctors or nurses around to help but we were glad to be home again. Justin ended up with an ear infection after getting home and within five days had his first two teeth. So it was hard to tell if he was uncomfortable from the surgery, ears or teeth. Once the swelling went down, his head shape looked great. It was still a little flat on the right side but the bulge on his forehead was gone. The incision had dissolvable stitches and the dissolvable screws in the back of his skull started to become more noticeable. Justin also started to sit up and hold his head up straight which he never did prior to surgery. We were very happy to see Justin doing well and happy again even though the night time sleeping was not so great.
Justin’s one month follow appointment was good, the sutures were still open and he will need to follow up every three months. His head shape will improve little by little as his brain grows and hopefully no other surgeries will be needed.
Justin is just over 2 months post-op and 8 months old now. The incision on the right side looks great but the left side is more noticeable and red since he had a little irritation from the stitches. His head shape looks good but his ears are still not even. Justin is having problems sleeping at night and his reflux has gotten worse. We have an appointment with a GI specialist next week to help figure out what is going on. Other than that he is improving in therapy, trying to do the army crawl and a very happy baby during the day. Justin’s follow-up with the NS is next month and he sees the ophthalmologist in March.
We are happy to have the surgery now behind us and so proud of Justin. He was so strong and brave for such a little boy to go through so much.
<o:p> </o:p>
We found out that something was wrong during one of the ultrasounds at around 25 weeks pregnant. The midwife referred us to a fetal specialist and he told us that the baby may have a large misshaped head, it could be just normal or it could be craniosynostosis. Right now the bones were too soft to know for sure but they will monitor him every month for cranial pressure. The next visit we decided to do a fetal MRI to have a clearer image and it showed nothing major was wrong with his brain but they were still unable to tell if the bones had fused. The next visit was going to give us a shock. At 36 weeks was a routine ultrasound to check for pressure and talk about possible C-section. The specialist came in and we decided that a C-section was our best option since they still were unsure what was going on with the baby’s head. Then he goes on to say that we should see if we could delivery him this week incase he needs medical attention sooner than later. They wanted to do an anmenio (sp) that day to see if his lungs were mature enough to deliver in four days. The neurosurgeon was called and he suggested that if the baby was not showing any signs of trouble then they could wait a few weeks. However, the ultrasound did show that the umbilical cord was wrapped around the baby’s neck. At that point I got scared and decided to do the anmenio (which everyone lied and it hurts!), we figure if he is born early he could only benefit from any medical attention he does need plus I would not be worrying about the cord being around his neck for the next 3 weeks. *Which a little info from the specialist, they do see this happen during the ultrasounds and never usual say anything to the mother since normally during birth it does not cause any harm.
The test showed his lungs were mature and it was up to us when to do the C-section. Right at 37 weeks (consider full term) on May 1, 2007 Justin Alan was born by C-section. When they pulled him out of me and hearing him cry I was so relieved and tears just started rolling down. Justin had a little flattening on the right back side of his head but it was barely noticeable and you could feel a ridge on the back. We were lucky to have such wonderful doctors during the pregnancy and they had lined us up with a Neurosurgeon who saw Justin at the hospital. Justin’s tone was low but he and was doing great and we went home after 3 days.
Our first visit with the NS was two weeks after Justin was born. He still was unsure if the bones had fused or if they just overlapped from being smashed inside of me. We were hoping for overlapping and we think the pediatrician thought the same thing. At one month Justin had a 3D CT scan done. He did great during the scan. I fed him a bottle and he was perfectly still. The scan did show that the oppipital bone did fuse on the right side which we later found out was the Lambdoidal suture – one of the rarest types of cranio. We did not think too much about his cranio between the ages of one to three months since Justin became colicky and we were doing our very best to help him and remain sane ourselves. At two months the pediatrician put Justin on Axid for reflux which helped the colic somewhat and we put him on Nutramigen formula. The spitting up/vomit was horrible, the naps never more than 20 minutes, and he would sleep the best at night in his car seat. We were always afraid that he was having pressure in his head but the doctors never seemed too concerned. Justin’s head shape did get worse between the ages of 2-3 months. His right side of his forehead was bulging slightly, right eye was smaller than the left, the right ear was down and more forward than the left, and the left back side of his head started to have an egg shape affect. From the research online they called it asymmetrical, which is exactly what it looked like; his head shape was growing from the right forehead to the left back of his skull. He also started to have a tilt to his head since the left side was overcompensating for his brain growth. Family and friends did not notice the difference in his appearance but months passed they could slowly see the affects cranio was having. At four months we met with the NS and the craniofacial surgeon. Justin’s head shape was getting worse and it would only get worse. Since Lambdoidal suture fusing early is rare they really don’t know the affects if not corrected. He was already showing signs of delay and began physical therapy to strengthen him up before surgery. He also saw an ophthalmologist to check his eyes for any sign of pressure which he had passed.
Surgery was decided to be done when he was five months old which was the longest wait of our lives. The night before surgery was difficult and we doubted ourselves if we are making the right decision putting him through such surgery. He was so happy and his appearance was not bad, he looked perfect to us. Then we told ourselves that we don’t know how bad his appearance will be if not corrected and what type of delays or cranial pressure could happen. The advantage of doing it so early will not only help correct the shape of his head but he will not remember anything later until we show him pictures and tell him his story with craniosynostosis.
Surgery was scheduled for October 22, 2007 – Justin was 5 ½ months old.
Day 1 - Handing him over to the nurse to take him back to the operating room was the hardest moment but hearing the words after 3 ½ hours of surgery from the doctors’ mouth that he did great were the most wonderful words. During surgery, the NS and craniofacial surgeon said that they could see his brain through the bones in his skull on the right side. The bones had thin out so much from his brain trying to grow but could not grow normally. Knowing that made us feel so much better on the decision to have the surgery for Justin and in good timing. I could not imagine what could have happened if it was not corrected, especially if he had fallen on his head. He is a very lucky little boy. The craniofacial surgeon also tried something new; she switched the bones, placing the bad side on the left side of his skull and good side where he was having so much pressure on the right. He did need some blood during the surgery and possibly more later. After almost two hours in recovery we finally were able to see Justin. Seeing your baby with tubes and in so much pain was heart braking. He was given some morphine but he was still very uncomfortable. Once he was transported to the PICU room, he looked so much more comfortable with the morphine and Tylenol given every as needed.
Day 2 -The next morning at 4 am his right eye was swollen shut and he was drinking small amounts of juice. By 9 am Justin did not need any more blood and was released to the step down unit once a room became available (which one never did and we stayed in PICU the entire time). All IV’s came out and was just connected to vital monitors which became annoying to us and to Justin. At 10 am I was able to hold Justin for the first time. I was nervous since the swelling was getting worse and I was afraid of hurting him. It was the first time holding him since handing him over to the nurse. The bandage also came off that morning and the incision looked good but was still oozing some blood. Throughout the day he was holding down his juice and formula very well and doing great. The morphine and Tylenol was going longer between dosages. By 7 pm the left eye had swollen shut.
Day 3 – peak of swelling, he did not look like himself. His skin was so tight and he looked like he had gained 10 lbs. That afternoon he had his first smile since the surgery and by 8 pm his eyes started to open.
Day 4 – Both eyes were slowly opening and the swelling had gone down. He was no longer on Morphine and the pain was starting to upset him. Justin was released by the afternoon and sent home with just Tylenol. It was scary bringing him home since we did not have the doctors or nurses around to help but we were glad to be home again. Justin ended up with an ear infection after getting home and within five days had his first two teeth. So it was hard to tell if he was uncomfortable from the surgery, ears or teeth. Once the swelling went down, his head shape looked great. It was still a little flat on the right side but the bulge on his forehead was gone. The incision had dissolvable stitches and the dissolvable screws in the back of his skull started to become more noticeable. Justin also started to sit up and hold his head up straight which he never did prior to surgery. We were very happy to see Justin doing well and happy again even though the night time sleeping was not so great.
Justin’s one month follow appointment was good, the sutures were still open and he will need to follow up every three months. His head shape will improve little by little as his brain grows and hopefully no other surgeries will be needed.
Justin is just over 2 months post-op and 8 months old now. The incision on the right side looks great but the left side is more noticeable and red since he had a little irritation from the stitches. His head shape looks good but his ears are still not even. Justin is having problems sleeping at night and his reflux has gotten worse. We have an appointment with a GI specialist next week to help figure out what is going on. Other than that he is improving in therapy, trying to do the army crawl and a very happy baby during the day. Justin’s follow-up with the NS is next month and he sees the ophthalmologist in March.
We are happy to have the surgery now behind us and so proud of Justin. He was so strong and brave for such a little boy to go through so much.
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