Wyatt's Mom
01-18-2008, 04:50 PM
Wyatt came into the world on April 14<SUP>th</SUP>, 2007 via scheduled repeat c-section. He was born at 39 weeks weighing 8lbs 2.7oz. As soon as I was out of recovery and was handed my 2<SUP>nd</SUP> son, I noticed something was not right with his head. He had a distinct ridge down the centre of his forehead and the back of his head was a bit bigger than the front. It gave him sort of an egg shaped head. I immediately asked the paediatrician who examined Wyatt after birth and he said it was probably just the way I carried him in uterus and that it would go away with time. I thought, okay, some kids have weird shaped heads after birth, but something still just didn’t sit right with me.
I saw my regular family doctor when Wyatt was 2 weeks old for a check-up. I mentioned his head shape again and the lack of a distinct soft spot on Wyatt’s head. I was told by him that everyone’s head is shaped different and that is just how Wyatt’s was. If his head was still growing, he was not worried. Again I thought, well, he is the doctor, he must know what he is talking about.
6 weeks went by and Wyatt was a horrible puker. He didn’t sleep and was always crying and throwing up. I took him back to the doctor at 8 weeks and Wyatt was diagnosed with Acid Reflux. The medication didn’t stop Wyatt from puking, but it did make him more comfortable by reducing the acid in his stomach. Finally at 8 weeks we were getting some sleep! I asked my doctor for a referral to a paediatrician with regards to Wyatt’s reflux. He obliged and finally in August I was able to see a paediatrician.
While at the paediatrician’s office I mentioned that Wyatt’s head shape has always bothered me. His head was still egg shaped and he still had a big ridge down the front of his forehead. Immediately she said “I am positive he has metopic craniosynostosis. I’m going to send you for an x-ray of his head”. I couldn’t believe it. I came home and told my husband and he started to get on the computer and google information about it. We were devastated. We came across a website called craniokids.org and found stories about other children with metopic craniosynostosis. We right away knew that is what Wyatt had. He looked so much like the other children we saw pictures of.
The next day the paediatrician phoned me and said the x-rays came back normal. She was no longer worried about his head and she just wanted to “keep an eye on him” over the next year. They would continue to measure his head and as long as it was growing, she wouldn’t worry. WHAT??? My husband and I were confused. How could she be so convinced he had it and then so convinced he didn’t? It just didn’t sit right with us. Just because his head is growing doesn’t mean it is growing the right way. We asked her to refer us to a specialist at Vancouver BC Children’s Hospital for a 2<SUP>nd</SUP> opinion.
We had to wait a long time for an appointment but we finally got in to see a neurosurgeon on November 8<SUP>th</SUP>, 2007. Wyatt was 6 months old. By this time my husband and I had convinced ourselves that Wyatt was fine and we were probably wasting our time with this. When you see your son everyday, you just get used to the way he looks and he starts to look normal to you. We honestly thought the specialist was going to take one look at Wyatt and ask us why we were there. Well, we were wrong. Dead wrong. He took one look at Wyatt and recommended surgery. We were devastated. I knew what surgery entailed after researching it on the internet and I was scared. The Doctor said on a scale of 1-10 Wyatt was probably a 6 or 7. It was cosmetic and it was our choice to have the surgery or not. He said that if we didn’t have the surgery Wyatt’s eyes would stay close together, which they are pretty close together right now, and that he’ll always look different and that it’ll be hard on him psychologically when he gets older. He also said there was a chance of ICP (intercranial pressure) and eye and vison problems if left uncorrected.
My husband and I did a lot of soul searching and I did a lot of crying over the next few weeks. We had to decide what we were going to do. Should we put him through surgery, or should we just leave him be? What would his life be like? Would he be made fun of in school? We had to do it; we don’t want him to resent us when he gets older for something that is fixable when he is a baby. Finally we decided on surgery. Wyatt was scheduled for a CT scan on January 8<SUP>th</SUP>, 2008. We knew this was nothing compared to surgery but I still cried when I had to hand him over to the nurse.
Wyatt’s CT scan came back the next day and confirmed what we already knew, he definitely had metopic craniosynostosis. He also has a partially fused saggital suture.
Here is a picture of him at 12 days old (that's my older son holding him, he was 15 months old at the time). You can clearly see the ridge down the front of his forehead and it even looks like his entire forehead protrudes a bit. You can see the indent at the side of the head where the forehead ends and the rest of the head continues. Does that make any sense? It's hard to explain but I think you can see it clearly.
http://i108.photobucket.com/albums/n8/babyspring06/100_0384.jpg
http://i108.photobucket.com/albums/n8/babyspring06/wyattsmall.jpg
Wyatt is scheduled for surgery to fix his metopic and saggital sutures on February 27<SUP>th</SUP>, 2008.
Wyatt’s pre-op was scheduled for February 25<SUP>th</SUP>, 2008 at 1:30pm. Wyatt’s pre-op went well. The anaesthesiologist explained how everything would go. He was very reassuring. We also got a tour of the wing where Wyatt would stay after surgery. Then we had to go get his blood taken. First of all we had to wait 45 minutes with a tired cranky 10 month old. The room was so crowded we couldn’t even let him play with any toys etc. I got to sit down while Josh had to stand as there were just so many people waiting. Once we got called in I thought “great, this should go good. They do this all the time with kids, this is a Children’s Hospital”. WRONG. The stupid nurse was completely incompetent. She really should look at changing jobs. She couldn’t find a vein and poked and prodded him 4 times. The 4<SUP>th</SUP> time she actually kept the needle in his arm and fished around for a vein. I’ve had blood taken lots and I know from personal experience it hurts like HELL when they do this SO it was no wonder Wyatt was screaming bloody murder. I finally got pissed and told her to get the supervisor to draw his blood. She came in and found a vein first try. I was bawling, Wyatt was bawling. Now why couldn’t we have gotten that nurse the first time??
After Wyatt’s pre-op appointment we met with a couple who’s daughter had surgery for metopic cranio with the same surgical team. It was so nice of them to come meet us. They answered so many questions for us and gave us some great tips for after the surgery. It was just so reassuring to see their daughter and how well she was doing.
That night we all slept well. The 26<SUP>th</SUP> was just a free day. We were waiting for my mom to come down as she was going to keep us company while Wyatt was in surgery and stay with Wyatt a bit so we could sleep.
We had to give Wyatt a special bath the night before surgery. They gave us this sponge thing with soap on it. Wyatt loved playing in the bath at the hotel. What a kid. He had no idea what the next day would hold. The night before surgery we slept surprisingly well. I think we were finally at peace with our decision for the surgery and just wanted it over. I woke Wyatt up at 4:50am to feed him a bottle for the last time. I didn’t want him to be too hungry while we were waiting. Luckily he went right back to sleep.
Wyatt had a quick nap from 8:40am-9:20am and then we were off to the hospital.
When we got to the hospital they put a numbing cream on his hand so that when the inserted the i.v. he wouldn’t feel it. Then we waited. Surgery was supposed to start at 11:15am. Every time a doctor or nurse walked in we thought “okay, time to give hugs and kisses, this is it”. NOPE. They were just coming to introduce themselves (again) and check on Wyatt. What an emotional roller coaster. We had no idea how many people were involved in his surgery. Wyatt did really well. I was expecting him to be cranky but he was pretty good. He sucked his thumb but wouldn’t go to sleep.
They finally came to take him at 12:30. Of course, as expected he was fine (didn’t even cry) and I was bawling my eyes out.
The neurosurgeon and plastic surgeon came to see us at 5:20pm. They said the surgery went well. Wyatt needed a small blood transfusion. He will be in recovery soon but we cannot see him until he is stable.
Josh and I were both able to see Wyatt shortly after 6pm. He was very drugged. I guess when he came out of anestetic he was in lots of pain and crying very hard. Poor guy. Even though I knew what to expect (because of this amazing CK website) I still cried. He looked so tiny on that huge bed and his head was all bandaged. He was on oxygen and he was doing fine. His morphine was lowered to a 2 (scale of 1-4) and he was resting peacefully. They kept trying to take him off the oxygen but his sats would drop. He was off oxygen around 7:15pm that night.
We got moved to the ward at 8pm. At this particular hospital we don’t get to go to a PICU. We are on the regular ward. CRAPPY. Each nurse has about 4 patients and we are in a room with 3 other beds. Wyatt had some issues with pain the first few days. They kept him on the morphine a bit longer than normal. He ended up being allergic to the codeine so after he was weaned off of the morphine he was put on regular Tylenol (every 4 hours) and Advil (every 6 hours).
Wyatt’s swelling peaked around 72 hours. It was really hard to see him like that. He was very hard to console and didn’t sleep much. Thank GOD for his glow worm and a nature cd that we borrowed from the hospital. Without them it would have been horrible.
They kept Wyatt on an IV for a long time because he wouldn’t eat or drink anything. This coming from a kid who NEVER missed a meal!! I was quite worried but once his left eye opened he was back to eating. He just wanted to be able to see! It was so cute. He was so happy.
We stayed in the hospital for a total of 5 days. Once he was eating and drinking more they were happy to kick us out!
The first week home was rough. Wyatt didn’t sleep well (everyone says to expect this but man, it is hard). It probably took him a good week or two to get back to his “normal” self.
Surgery Pictures:
In recovery:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0415.jpg
First time I held him:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0427.jpg
Really Swollen and looks nothing like himself:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0428.jpg
Finally eating! The swelling is starting to go down:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0433.jpg
Happy to be home!!!
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0445.jpg
Top view of his head:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0442.jpg
Two weeks post op (I think):
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0451.jpg
One month post op:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0465.jpg
4 Months Post-op:
http://i289.photobucket.com/albums/ll229/sarahkier/IMG_0786.jpg
At this time Wyatt is still being seen every few months by the neurosurgeon and plastic surgeon. Wyatt's head has not grown since his surgery. They are a bit concerned as to WHY it isn't growing and we go back for another checkup on December 18, 2008. At this time I believe if nothing has changed they will be doing a ct scan to see just what is going on in there. I pray everyday that his head starts growing properly and we don't have to do this again.
Wyatt was seen on December 18th. The surgeon measured his head multiple times and told us his head has grown .5cm. I guess I should be excited but I just don't know. .5cm isn't that much. The tape could have slipped or he measured wrong or something. For right now we are waiting it out, Wyatt is not showing any signs of ICP or any signs of developmental delays. He is talking more and more each day. We have another appointment in April. Honestly, if nothing has changed, I really want to go to Dallas to get Dr. Fearon's opinion.
Wyatt was seen in April by the neurosurgeon and plastic surgeon. His head has grown and he is doing great! At this point he needs to be seen once a year until he is 5. It is so nice to be "free" for awhile and not have to worry about going to the hospital for checkups! I'll post some pictures soon, I can't believe it has been so long since I updated his story!
I saw my regular family doctor when Wyatt was 2 weeks old for a check-up. I mentioned his head shape again and the lack of a distinct soft spot on Wyatt’s head. I was told by him that everyone’s head is shaped different and that is just how Wyatt’s was. If his head was still growing, he was not worried. Again I thought, well, he is the doctor, he must know what he is talking about.
6 weeks went by and Wyatt was a horrible puker. He didn’t sleep and was always crying and throwing up. I took him back to the doctor at 8 weeks and Wyatt was diagnosed with Acid Reflux. The medication didn’t stop Wyatt from puking, but it did make him more comfortable by reducing the acid in his stomach. Finally at 8 weeks we were getting some sleep! I asked my doctor for a referral to a paediatrician with regards to Wyatt’s reflux. He obliged and finally in August I was able to see a paediatrician.
While at the paediatrician’s office I mentioned that Wyatt’s head shape has always bothered me. His head was still egg shaped and he still had a big ridge down the front of his forehead. Immediately she said “I am positive he has metopic craniosynostosis. I’m going to send you for an x-ray of his head”. I couldn’t believe it. I came home and told my husband and he started to get on the computer and google information about it. We were devastated. We came across a website called craniokids.org and found stories about other children with metopic craniosynostosis. We right away knew that is what Wyatt had. He looked so much like the other children we saw pictures of.
The next day the paediatrician phoned me and said the x-rays came back normal. She was no longer worried about his head and she just wanted to “keep an eye on him” over the next year. They would continue to measure his head and as long as it was growing, she wouldn’t worry. WHAT??? My husband and I were confused. How could she be so convinced he had it and then so convinced he didn’t? It just didn’t sit right with us. Just because his head is growing doesn’t mean it is growing the right way. We asked her to refer us to a specialist at Vancouver BC Children’s Hospital for a 2<SUP>nd</SUP> opinion.
We had to wait a long time for an appointment but we finally got in to see a neurosurgeon on November 8<SUP>th</SUP>, 2007. Wyatt was 6 months old. By this time my husband and I had convinced ourselves that Wyatt was fine and we were probably wasting our time with this. When you see your son everyday, you just get used to the way he looks and he starts to look normal to you. We honestly thought the specialist was going to take one look at Wyatt and ask us why we were there. Well, we were wrong. Dead wrong. He took one look at Wyatt and recommended surgery. We were devastated. I knew what surgery entailed after researching it on the internet and I was scared. The Doctor said on a scale of 1-10 Wyatt was probably a 6 or 7. It was cosmetic and it was our choice to have the surgery or not. He said that if we didn’t have the surgery Wyatt’s eyes would stay close together, which they are pretty close together right now, and that he’ll always look different and that it’ll be hard on him psychologically when he gets older. He also said there was a chance of ICP (intercranial pressure) and eye and vison problems if left uncorrected.
My husband and I did a lot of soul searching and I did a lot of crying over the next few weeks. We had to decide what we were going to do. Should we put him through surgery, or should we just leave him be? What would his life be like? Would he be made fun of in school? We had to do it; we don’t want him to resent us when he gets older for something that is fixable when he is a baby. Finally we decided on surgery. Wyatt was scheduled for a CT scan on January 8<SUP>th</SUP>, 2008. We knew this was nothing compared to surgery but I still cried when I had to hand him over to the nurse.
Wyatt’s CT scan came back the next day and confirmed what we already knew, he definitely had metopic craniosynostosis. He also has a partially fused saggital suture.
Here is a picture of him at 12 days old (that's my older son holding him, he was 15 months old at the time). You can clearly see the ridge down the front of his forehead and it even looks like his entire forehead protrudes a bit. You can see the indent at the side of the head where the forehead ends and the rest of the head continues. Does that make any sense? It's hard to explain but I think you can see it clearly.
http://i108.photobucket.com/albums/n8/babyspring06/100_0384.jpg
http://i108.photobucket.com/albums/n8/babyspring06/wyattsmall.jpg
Wyatt is scheduled for surgery to fix his metopic and saggital sutures on February 27<SUP>th</SUP>, 2008.
Wyatt’s pre-op was scheduled for February 25<SUP>th</SUP>, 2008 at 1:30pm. Wyatt’s pre-op went well. The anaesthesiologist explained how everything would go. He was very reassuring. We also got a tour of the wing where Wyatt would stay after surgery. Then we had to go get his blood taken. First of all we had to wait 45 minutes with a tired cranky 10 month old. The room was so crowded we couldn’t even let him play with any toys etc. I got to sit down while Josh had to stand as there were just so many people waiting. Once we got called in I thought “great, this should go good. They do this all the time with kids, this is a Children’s Hospital”. WRONG. The stupid nurse was completely incompetent. She really should look at changing jobs. She couldn’t find a vein and poked and prodded him 4 times. The 4<SUP>th</SUP> time she actually kept the needle in his arm and fished around for a vein. I’ve had blood taken lots and I know from personal experience it hurts like HELL when they do this SO it was no wonder Wyatt was screaming bloody murder. I finally got pissed and told her to get the supervisor to draw his blood. She came in and found a vein first try. I was bawling, Wyatt was bawling. Now why couldn’t we have gotten that nurse the first time??
After Wyatt’s pre-op appointment we met with a couple who’s daughter had surgery for metopic cranio with the same surgical team. It was so nice of them to come meet us. They answered so many questions for us and gave us some great tips for after the surgery. It was just so reassuring to see their daughter and how well she was doing.
That night we all slept well. The 26<SUP>th</SUP> was just a free day. We were waiting for my mom to come down as she was going to keep us company while Wyatt was in surgery and stay with Wyatt a bit so we could sleep.
We had to give Wyatt a special bath the night before surgery. They gave us this sponge thing with soap on it. Wyatt loved playing in the bath at the hotel. What a kid. He had no idea what the next day would hold. The night before surgery we slept surprisingly well. I think we were finally at peace with our decision for the surgery and just wanted it over. I woke Wyatt up at 4:50am to feed him a bottle for the last time. I didn’t want him to be too hungry while we were waiting. Luckily he went right back to sleep.
Wyatt had a quick nap from 8:40am-9:20am and then we were off to the hospital.
When we got to the hospital they put a numbing cream on his hand so that when the inserted the i.v. he wouldn’t feel it. Then we waited. Surgery was supposed to start at 11:15am. Every time a doctor or nurse walked in we thought “okay, time to give hugs and kisses, this is it”. NOPE. They were just coming to introduce themselves (again) and check on Wyatt. What an emotional roller coaster. We had no idea how many people were involved in his surgery. Wyatt did really well. I was expecting him to be cranky but he was pretty good. He sucked his thumb but wouldn’t go to sleep.
They finally came to take him at 12:30. Of course, as expected he was fine (didn’t even cry) and I was bawling my eyes out.
The neurosurgeon and plastic surgeon came to see us at 5:20pm. They said the surgery went well. Wyatt needed a small blood transfusion. He will be in recovery soon but we cannot see him until he is stable.
Josh and I were both able to see Wyatt shortly after 6pm. He was very drugged. I guess when he came out of anestetic he was in lots of pain and crying very hard. Poor guy. Even though I knew what to expect (because of this amazing CK website) I still cried. He looked so tiny on that huge bed and his head was all bandaged. He was on oxygen and he was doing fine. His morphine was lowered to a 2 (scale of 1-4) and he was resting peacefully. They kept trying to take him off the oxygen but his sats would drop. He was off oxygen around 7:15pm that night.
We got moved to the ward at 8pm. At this particular hospital we don’t get to go to a PICU. We are on the regular ward. CRAPPY. Each nurse has about 4 patients and we are in a room with 3 other beds. Wyatt had some issues with pain the first few days. They kept him on the morphine a bit longer than normal. He ended up being allergic to the codeine so after he was weaned off of the morphine he was put on regular Tylenol (every 4 hours) and Advil (every 6 hours).
Wyatt’s swelling peaked around 72 hours. It was really hard to see him like that. He was very hard to console and didn’t sleep much. Thank GOD for his glow worm and a nature cd that we borrowed from the hospital. Without them it would have been horrible.
They kept Wyatt on an IV for a long time because he wouldn’t eat or drink anything. This coming from a kid who NEVER missed a meal!! I was quite worried but once his left eye opened he was back to eating. He just wanted to be able to see! It was so cute. He was so happy.
We stayed in the hospital for a total of 5 days. Once he was eating and drinking more they were happy to kick us out!
The first week home was rough. Wyatt didn’t sleep well (everyone says to expect this but man, it is hard). It probably took him a good week or two to get back to his “normal” self.
Surgery Pictures:
In recovery:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0415.jpg
First time I held him:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0427.jpg
Really Swollen and looks nothing like himself:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0428.jpg
Finally eating! The swelling is starting to go down:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0433.jpg
Happy to be home!!!
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0445.jpg
Top view of his head:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0442.jpg
Two weeks post op (I think):
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0451.jpg
One month post op:
http://i108.photobucket.com/albums/n8/babyspring06/IMG_0465.jpg
4 Months Post-op:
http://i289.photobucket.com/albums/ll229/sarahkier/IMG_0786.jpg
At this time Wyatt is still being seen every few months by the neurosurgeon and plastic surgeon. Wyatt's head has not grown since his surgery. They are a bit concerned as to WHY it isn't growing and we go back for another checkup on December 18, 2008. At this time I believe if nothing has changed they will be doing a ct scan to see just what is going on in there. I pray everyday that his head starts growing properly and we don't have to do this again.
Wyatt was seen on December 18th. The surgeon measured his head multiple times and told us his head has grown .5cm. I guess I should be excited but I just don't know. .5cm isn't that much. The tape could have slipped or he measured wrong or something. For right now we are waiting it out, Wyatt is not showing any signs of ICP or any signs of developmental delays. He is talking more and more each day. We have another appointment in April. Honestly, if nothing has changed, I really want to go to Dallas to get Dr. Fearon's opinion.
Wyatt was seen in April by the neurosurgeon and plastic surgeon. His head has grown and he is doing great! At this point he needs to be seen once a year until he is 5. It is so nice to be "free" for awhile and not have to worry about going to the hospital for checkups! I'll post some pictures soon, I can't believe it has been so long since I updated his story!