Tawnia
01-05-2008, 06:19 AM
Well I know this is long overdue but I figured I should probably add Azia's story to the list.
John and I had been married for 6 months when we decided it was time to expand the family. I got pregnant right away and we were very excited. We decided to find out the sex of the baby and were delighted to find out we were expecting a little girl. We chose the name Azia-lynn. Azia just popped into my head (we found out later it means Strength) and Lynne is my middle name as well as my mother and sister's middle name (I spelled it without an 'e' like my mother's). I had a very uneventful pregnancy and I started having contractions about 8 days before my due date. My water broke at 3am on the 22nd and I didn't have Azia until 5:10pm on the 23rd. It was a long labour because she was turned the wrong way and was stuck under the pubic bone. When Azia was born we were so relieved. She was the most beautiful thing we had ever seen...she had sweet delicate features and a ton of dark hair. She was no tiny thing; 8 lbs 15oz and 21 inches long and was born on her original due date (before they changed it) - 6 days before the modified one. Everything seemed to be fine. She had a swollen bump on her forehead with a bruise on it but they said that was where her head had been pressed against the pubic bone and it would be gone in a couple of days.
The first time we knew something was wrong was when she was 24 hours old and the Pediatrician came to check her out. She was concerned because she could hear a heart murmur but she also mentioned that the swelling on Azia's head didn't seem to be going down yet. We stayed an extra day in the hospital because of Azia's heart and because she wasn't eating well (they blamed it on trauma from the birth, but we found out at 4 months that she was actually tongue-tied so she had trouble sucking properly). After almost 4 days in the hospital we were allowed to take our baby home. The day after we brought her home we had a visit to the Cardiologist scheduled at BC Children's Hospital. They did ECGs and Ultrasounds on her heart and gave us a diagnose us that shocked and alarmed us. Our baby had a Ventricular Septal Defect (VSD) - a hole in her heart. The size of it was large enough that she may need surgery but small enough that they wanted to wait and see if it healed or how it affected her. We drove home that day crying...wondering if our little baby girl who we had waited so long for would be ok.
Because Azia had a heart defect we would continue to see a Pediatrician instead of taking her to our regular GP. When we took her in for her Well-Baby visit at 1 month she commented that there still seemed to be a ridge on her forehead and for the first time mentioned something about a possible fused suture. Knowing we were already going through so much in regards to her heart she left it at that. Over the next 4 months we would have 3 more visits to the Cardiologist, each time relieved that her weight gain was normal and she didn't seem to be having any trouble breathing or eating. Finally at the 4 month appointment we heard the news we had been waiting to hear. The VSD had almost completely closed on its own and she would not need surgery. He was confident that it would completely close without any intervention by the time she was 6 months old. We were so happy that we could (almost) put that out of our minds. We still have to go back when she is 18 months old because the hole was very close to a valve and he wants to make sure that valve isn't sagging because of the weakened ventricular wall - but he said there was no indication of that so far.
Riding on the elation of a positive report from the Cardiologist we went to her next Well-Baby exam with confidence and were swiftly brought back to earth. The pediatrician said that she was pretty sure our daughter had a fused Metopic suture (the one that runs vertically down the center of the forehead) and that she wanted to schedule an appointment with a Neurosurgeon so that he could confirm the diagnosis or rule it out. We were crushed. We had finally gotten news that our daughter was going to be ok when we had another birth defect thrust upon us. We met with the NS when Azia was 6 months old and after looking at her and feeling her skull he said that she was a pretty typical case of Metopic Cranial Synostosis. He said that it was ultimately our decision but that he recommended she have reconsructive surgery done on her skull to fix the defect or it would get more pronounced as she aged. Already the trigonocephaly (triangular shaped head) was apparent when she was in the bath or had her hair pulled back. He went on to describe the surgery in detail and completely overwhelm us. We both cried all the way home and for many days after as well.
The NS had us take her to have a CT scan done to make sure that was the only defect in her skull (it was as far as they could see) and we were lucky (and tricky enough on my part) to time it just right so she fell asleep just as they were coming to get her and they didn't have to sedate her for the CT. We were given a few weeks to think about it and then met with the plastic surgeon that formed the other half of the 2 man Cranio-Team and give him our answer. We decided to do what was best for our daughter and go ahead with the surgery. We were given a surgery date soon after for 8 weeks from then and then was the hardest wait of our lives. The day before surgery we went in to do preadmission and they told us that we had been bumped for an emergency surgery and would have to wait 4 more days. We scrambled to make alternate arrangements with work and family but we managed. Family donated money for food, etc and a friend of my mother's at her work put up a jar that collected over $100 for us. We were touched by the out pouring of emotion.
She was 8 months old when they did the surgery. The day of the surgery my parents met us at the hospital. Azia was in good spirits despite the fact that she had been fasting since the night before. We ended up getting in for her surgery almost 3 hours later than it was scheduled and by then she was getting cranky. They gave her a sedative to relax her and took her out of my arms and away to the operating room. It was heartbreaking (they don't allow parents in for Children under a year old). We tried eating and walking around to distract ourselves but the surgery took the full 4 hrs allotted and it was hard to wait. They finally came out and told us that it had been a success. They were going to take her out of the anesthesia and then we could see her. That was at 6pm. It was almost 9pm by the time we saw our little girl. They had trouble waking her from the anesthesia and her oxygen and blood pressure kept dropping. They had had to give her a blood transfusion. She wasn't looking too bad. She was swollen a bit and her head was wrapped in a bandage. The most upsetting part is that she couldn't/wouldn't wake up. The next few days were a blur. She got really swollen but still wanted to play with her toys. She would smile and wave in the direction of our voices even though her eyes were swollen shut. It took until 11pm the first night to get her off oxygen and 2 days to get her off of morphine and onto tylenol w/ codeine. The surgery was on Tuesday afternoon and by friday morning she was crawling around (eyes swollen shut!) in the crib so they told us that we could take her home.
We were elated. That meant the hard part was over and only the healing was left. She was able to open one eye that evening and the first thing she saw was me. She gave me a big smile and reached out her little arms and grabbed onto me. I was so proud of what a strong little girl she had been all I wanted to do was hug her and hug her. By the next day both of her eyes were open and our swollen little thing was trying to be her regular self, crawling and standing up to furniture! It took 2 weeks to fully get her off of meds. Every day she looked less swollen and we started to see her new face. Her eyes were the last thing to return to normal and I was so relieved...I had been so worried that this surgery would take away her big round eyes. I am happy to say they are definitely back!
I wish I could say the story ends there. 6 weeks after the surgery we went for a follow-up at the PS and I voiced my concerns. Her right brow bone was at a different height than the left. Since the brow bones were still quite prominent at that point it was very obvious when you looked at her. On one side her eyebrow was right on the brow bone; and on the other side her eyebrow was UNDERNEATH the brow bone. He looked at it and said that it looked like a couple of sutures had come loose and the bone graft on that side had twisted slightly, making that brow bone higher. He said that the bone builds up as it grows and the brow bones themselves become less noticeable over time so we would have to see in 6 months what it looks like and there is a possibility that she may need to have a touch-up surgery to add a piece of bone on top of that brow bone so that it looks even.
And that's where we are at now. This summer we will go back to the Cardiologist and have him check the valve, we go back to the PS and see if he thinks we will need a touch-up (our follow-up at the NS went well, everything was healing great but he agreed it was very possible she would need that fixed) and back to the eye Dr. to make sure the surgery didn't damage anything (it is standard procedure). She is now a walking, talking 11 month old that you would never know had surgery (unless you look closely at her eyebrow).
Here she is 3 months post-op:
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0010.jpg
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0020.jpg
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0017.jpg
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0003.jpg
ETA: I forgot to mention that when the NS and PS came out to say the surgery was successful they also mentioned that the bone had been a lot more deformed than they had thought. She had had a large flat spot on the top of her head behind the fused suture so that when they reversed the bone (that is how they get the correct shape with Metopic CVRs) she had a large "ski jump" of bone sticking out and they had to shave off 7 millimetres of bone in order to make it the correct shape for her face.
John and I had been married for 6 months when we decided it was time to expand the family. I got pregnant right away and we were very excited. We decided to find out the sex of the baby and were delighted to find out we were expecting a little girl. We chose the name Azia-lynn. Azia just popped into my head (we found out later it means Strength) and Lynne is my middle name as well as my mother and sister's middle name (I spelled it without an 'e' like my mother's). I had a very uneventful pregnancy and I started having contractions about 8 days before my due date. My water broke at 3am on the 22nd and I didn't have Azia until 5:10pm on the 23rd. It was a long labour because she was turned the wrong way and was stuck under the pubic bone. When Azia was born we were so relieved. She was the most beautiful thing we had ever seen...she had sweet delicate features and a ton of dark hair. She was no tiny thing; 8 lbs 15oz and 21 inches long and was born on her original due date (before they changed it) - 6 days before the modified one. Everything seemed to be fine. She had a swollen bump on her forehead with a bruise on it but they said that was where her head had been pressed against the pubic bone and it would be gone in a couple of days.
The first time we knew something was wrong was when she was 24 hours old and the Pediatrician came to check her out. She was concerned because she could hear a heart murmur but she also mentioned that the swelling on Azia's head didn't seem to be going down yet. We stayed an extra day in the hospital because of Azia's heart and because she wasn't eating well (they blamed it on trauma from the birth, but we found out at 4 months that she was actually tongue-tied so she had trouble sucking properly). After almost 4 days in the hospital we were allowed to take our baby home. The day after we brought her home we had a visit to the Cardiologist scheduled at BC Children's Hospital. They did ECGs and Ultrasounds on her heart and gave us a diagnose us that shocked and alarmed us. Our baby had a Ventricular Septal Defect (VSD) - a hole in her heart. The size of it was large enough that she may need surgery but small enough that they wanted to wait and see if it healed or how it affected her. We drove home that day crying...wondering if our little baby girl who we had waited so long for would be ok.
Because Azia had a heart defect we would continue to see a Pediatrician instead of taking her to our regular GP. When we took her in for her Well-Baby visit at 1 month she commented that there still seemed to be a ridge on her forehead and for the first time mentioned something about a possible fused suture. Knowing we were already going through so much in regards to her heart she left it at that. Over the next 4 months we would have 3 more visits to the Cardiologist, each time relieved that her weight gain was normal and she didn't seem to be having any trouble breathing or eating. Finally at the 4 month appointment we heard the news we had been waiting to hear. The VSD had almost completely closed on its own and she would not need surgery. He was confident that it would completely close without any intervention by the time she was 6 months old. We were so happy that we could (almost) put that out of our minds. We still have to go back when she is 18 months old because the hole was very close to a valve and he wants to make sure that valve isn't sagging because of the weakened ventricular wall - but he said there was no indication of that so far.
Riding on the elation of a positive report from the Cardiologist we went to her next Well-Baby exam with confidence and were swiftly brought back to earth. The pediatrician said that she was pretty sure our daughter had a fused Metopic suture (the one that runs vertically down the center of the forehead) and that she wanted to schedule an appointment with a Neurosurgeon so that he could confirm the diagnosis or rule it out. We were crushed. We had finally gotten news that our daughter was going to be ok when we had another birth defect thrust upon us. We met with the NS when Azia was 6 months old and after looking at her and feeling her skull he said that she was a pretty typical case of Metopic Cranial Synostosis. He said that it was ultimately our decision but that he recommended she have reconsructive surgery done on her skull to fix the defect or it would get more pronounced as she aged. Already the trigonocephaly (triangular shaped head) was apparent when she was in the bath or had her hair pulled back. He went on to describe the surgery in detail and completely overwhelm us. We both cried all the way home and for many days after as well.
The NS had us take her to have a CT scan done to make sure that was the only defect in her skull (it was as far as they could see) and we were lucky (and tricky enough on my part) to time it just right so she fell asleep just as they were coming to get her and they didn't have to sedate her for the CT. We were given a few weeks to think about it and then met with the plastic surgeon that formed the other half of the 2 man Cranio-Team and give him our answer. We decided to do what was best for our daughter and go ahead with the surgery. We were given a surgery date soon after for 8 weeks from then and then was the hardest wait of our lives. The day before surgery we went in to do preadmission and they told us that we had been bumped for an emergency surgery and would have to wait 4 more days. We scrambled to make alternate arrangements with work and family but we managed. Family donated money for food, etc and a friend of my mother's at her work put up a jar that collected over $100 for us. We were touched by the out pouring of emotion.
She was 8 months old when they did the surgery. The day of the surgery my parents met us at the hospital. Azia was in good spirits despite the fact that she had been fasting since the night before. We ended up getting in for her surgery almost 3 hours later than it was scheduled and by then she was getting cranky. They gave her a sedative to relax her and took her out of my arms and away to the operating room. It was heartbreaking (they don't allow parents in for Children under a year old). We tried eating and walking around to distract ourselves but the surgery took the full 4 hrs allotted and it was hard to wait. They finally came out and told us that it had been a success. They were going to take her out of the anesthesia and then we could see her. That was at 6pm. It was almost 9pm by the time we saw our little girl. They had trouble waking her from the anesthesia and her oxygen and blood pressure kept dropping. They had had to give her a blood transfusion. She wasn't looking too bad. She was swollen a bit and her head was wrapped in a bandage. The most upsetting part is that she couldn't/wouldn't wake up. The next few days were a blur. She got really swollen but still wanted to play with her toys. She would smile and wave in the direction of our voices even though her eyes were swollen shut. It took until 11pm the first night to get her off oxygen and 2 days to get her off of morphine and onto tylenol w/ codeine. The surgery was on Tuesday afternoon and by friday morning she was crawling around (eyes swollen shut!) in the crib so they told us that we could take her home.
We were elated. That meant the hard part was over and only the healing was left. She was able to open one eye that evening and the first thing she saw was me. She gave me a big smile and reached out her little arms and grabbed onto me. I was so proud of what a strong little girl she had been all I wanted to do was hug her and hug her. By the next day both of her eyes were open and our swollen little thing was trying to be her regular self, crawling and standing up to furniture! It took 2 weeks to fully get her off of meds. Every day she looked less swollen and we started to see her new face. Her eyes were the last thing to return to normal and I was so relieved...I had been so worried that this surgery would take away her big round eyes. I am happy to say they are definitely back!
I wish I could say the story ends there. 6 weeks after the surgery we went for a follow-up at the PS and I voiced my concerns. Her right brow bone was at a different height than the left. Since the brow bones were still quite prominent at that point it was very obvious when you looked at her. On one side her eyebrow was right on the brow bone; and on the other side her eyebrow was UNDERNEATH the brow bone. He looked at it and said that it looked like a couple of sutures had come loose and the bone graft on that side had twisted slightly, making that brow bone higher. He said that the bone builds up as it grows and the brow bones themselves become less noticeable over time so we would have to see in 6 months what it looks like and there is a possibility that she may need to have a touch-up surgery to add a piece of bone on top of that brow bone so that it looks even.
And that's where we are at now. This summer we will go back to the Cardiologist and have him check the valve, we go back to the PS and see if he thinks we will need a touch-up (our follow-up at the NS went well, everything was healing great but he agreed it was very possible she would need that fixed) and back to the eye Dr. to make sure the surgery didn't damage anything (it is standard procedure). She is now a walking, talking 11 month old that you would never know had surgery (unless you look closely at her eyebrow).
Here she is 3 months post-op:
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0010.jpg
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0020.jpg
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0017.jpg
http://i96.photobucket.com/albums/l192/oddones_723/Azia%20Pics/000_0003.jpg
ETA: I forgot to mention that when the NS and PS came out to say the surgery was successful they also mentioned that the bone had been a lot more deformed than they had thought. She had had a large flat spot on the top of her head behind the fused suture so that when they reversed the bone (that is how they get the correct shape with Metopic CVRs) she had a large "ski jump" of bone sticking out and they had to shave off 7 millimetres of bone in order to make it the correct shape for her face.