judyspady
02-21-2008, 05:22 PM
We were told that the instance of Craniosynostosis with our first son was just a fluke. They said it’s usually in boys and the first born and it is not labelled as ‘genetic’…..yet. They told us that we had less than a 2% chance of it happening again.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
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When I was pregnant with our 2<SUP>nd</SUP> I wanted to know if there was any chance for Craniosynostosis. I didn’t care to know about any other issues and chose not to do an amnio but I wanted to be prepared if necessary to deal with craniosynostosis the 2<SUP>nd</SUP> time around. We went to a genetic specialist and did tons of ultrasounds throughout my pregnancy and one at 36 weeks where they said ‘not to worry’. His head measured round and showed no signs so they completely ruled it out. We were sooo happy!...until the delivery day. I had a planned c-section and right after the doc pulled him out they asked me how they would check his head. I said ‘why, does he have craniosynostosis?’…they immediately back-tracked and said ‘no, we’re not saying that’. Right then, my heart sank and I just knew. My hubby was running around with the video camera so excited and I was lying there crying. He couldn’t figure out what was wrong with me but I told him I thought it was definite. Later that night, it was confirmed. I handled the 2<SUP>nd</SUP> better than the first but it was the opposite for my hubby. He had put it behind us and was devastated when we knew we’d have to face it again. I kept reminding him that we could do it because we knew what to expect. We would get through it…and we did.<o:p></o:p>
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The 2<SUP>nd</SUP> time was similar in a lot of ways but also very different (both on the positive and negative side). We were instantly worried because Eli’s surgeon was no longer there; however, it turned out even better because we got a man who had been there twice as long and he was the one who taught our first surgeon. We ran into some issues with the blood donation though. I went and gave my blood and a few days before surgery we found out that it didn’t make the transfer from were we live to <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:City w:st="on"><st1:place w:st="on">Denver</st1:place></st1:City> (it got lost somewhere). I was not happy but went back in to give more and demanded that they track the shipping along the way while communicating each step to me. They did and luckily it made it there on time. As I said, he did not need the blood during the surgery but the next day his count was low and they said he would need some. I was a little uncomfortable but felt reassured that it was mine. Then, the nurse practitioner (NP) came in to say there was a problem. Somebody in the operating room forgot to put the blood back into the fridge and it had coagulated and could not be used. I was furious! The previous day we had learned that some religions do not allow blood transfusions and that in that case, they give them extra shots to boost up their blood reproduction. To get to the point, I asked our NP if we could do that instead because his count was borderline not really low. Our wonderful NP went to talk with the doc while he was in another surgery and asked if we could give it a try. We did and he was fine. They kept saying to trust the blood system but I didn’t at that point and it’s scary to worry about a tiny baby with the rest of their life in front of them (what if they got blood with AIDS or something). I’m not saying that you shouldn’t use someone else’s blood if necessary. I’m just glad that we opened our mind up to consider some other alternatives when faced with an obstacle.<o:p></o:p>
<o:p> </o:p>
Anyhow, Ethan had surgery at 3 months old and did great! The drain in his head really helped with the swelling and he only had his eyes shut for about a half a day. One of the surgeons on the team was the one who separated the twins in Denver that were attached at the head at birth a few years ago. The whole team is brilliant!
Strangely enough, both of our boys were admitted to the hospital on a Thursday and were out by Sunday. Ethan is now a happy, rambunctious 2-year old and you can’t tell that he ever had it either. Here are some of his pics and as you can see he was pretty well back to normal a week after the surgery (especially in the one with his big bro).
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<o:p> </o:p>
When I was pregnant with our 2<SUP>nd</SUP> I wanted to know if there was any chance for Craniosynostosis. I didn’t care to know about any other issues and chose not to do an amnio but I wanted to be prepared if necessary to deal with craniosynostosis the 2<SUP>nd</SUP> time around. We went to a genetic specialist and did tons of ultrasounds throughout my pregnancy and one at 36 weeks where they said ‘not to worry’. His head measured round and showed no signs so they completely ruled it out. We were sooo happy!...until the delivery day. I had a planned c-section and right after the doc pulled him out they asked me how they would check his head. I said ‘why, does he have craniosynostosis?’…they immediately back-tracked and said ‘no, we’re not saying that’. Right then, my heart sank and I just knew. My hubby was running around with the video camera so excited and I was lying there crying. He couldn’t figure out what was wrong with me but I told him I thought it was definite. Later that night, it was confirmed. I handled the 2<SUP>nd</SUP> better than the first but it was the opposite for my hubby. He had put it behind us and was devastated when we knew we’d have to face it again. I kept reminding him that we could do it because we knew what to expect. We would get through it…and we did.<o:p></o:p>
<o:p> </o:p>
The 2<SUP>nd</SUP> time was similar in a lot of ways but also very different (both on the positive and negative side). We were instantly worried because Eli’s surgeon was no longer there; however, it turned out even better because we got a man who had been there twice as long and he was the one who taught our first surgeon. We ran into some issues with the blood donation though. I went and gave my blood and a few days before surgery we found out that it didn’t make the transfer from were we live to <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:City w:st="on"><st1:place w:st="on">Denver</st1:place></st1:City> (it got lost somewhere). I was not happy but went back in to give more and demanded that they track the shipping along the way while communicating each step to me. They did and luckily it made it there on time. As I said, he did not need the blood during the surgery but the next day his count was low and they said he would need some. I was a little uncomfortable but felt reassured that it was mine. Then, the nurse practitioner (NP) came in to say there was a problem. Somebody in the operating room forgot to put the blood back into the fridge and it had coagulated and could not be used. I was furious! The previous day we had learned that some religions do not allow blood transfusions and that in that case, they give them extra shots to boost up their blood reproduction. To get to the point, I asked our NP if we could do that instead because his count was borderline not really low. Our wonderful NP went to talk with the doc while he was in another surgery and asked if we could give it a try. We did and he was fine. They kept saying to trust the blood system but I didn’t at that point and it’s scary to worry about a tiny baby with the rest of their life in front of them (what if they got blood with AIDS or something). I’m not saying that you shouldn’t use someone else’s blood if necessary. I’m just glad that we opened our mind up to consider some other alternatives when faced with an obstacle.<o:p></o:p>
<o:p> </o:p>
Anyhow, Ethan had surgery at 3 months old and did great! The drain in his head really helped with the swelling and he only had his eyes shut for about a half a day. One of the surgeons on the team was the one who separated the twins in Denver that were attached at the head at birth a few years ago. The whole team is brilliant!
Strangely enough, both of our boys were admitted to the hospital on a Thursday and were out by Sunday. Ethan is now a happy, rambunctious 2-year old and you can’t tell that he ever had it either. Here are some of his pics and as you can see he was pretty well back to normal a week after the surgery (especially in the one with his big bro).
260
261
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