Sanders mum
02-17-2009, 03:47 PM
As I mentioned in 'the Welcome Mat' I'll try to put Sanders story here... <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
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I got pregnant of Sander in may 2007. It was a strange pregnancy: after 4 weeks doctors told me I was carrying my baby outside my uterus, maybe in the oviduct. That's because there was nothing like an embryo in the uterus and my HcG hormone level was really high.. I was submitted in hospital to be sure I would have the help I needed when things would go wrong... Next morning, gynaecologist said he might have seen an embryo on the echo. Another echo, and yes there was something beating. It was really strange, I couldn't believe it would be right... And in my 11th I got a huge haemorrhage, so byebye... Not at all byebye, there was still life in my womb. Inconceivable...
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It was only from the 20 week structural echo on that I believed it all would be allright with our little miracle. The rest of the pregnancy went well, no problems at all. At 36 weeks I was still doing everything. From then on I got a little swollen..
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I was expecting February 22, but no signs at all that labour would begin. On February 24 in the evening at about 21.00 I was sure I was in labour. In the morning at about 8 I could start 'pushing' but no baby... I was brought to the local hospital and Sander was born at 11.20 am by 'vacuum pump'. He looked normal to me, and to others (like the paediatrician). He developed really great. We had some worries about his strong 'lying 'preference to which a child physiotherapist was counseled. Only 3 sessions and some practice at home were necessary to make this better.
At the 3 months checkup (May) at the infant welfare centre the doctor expressed her worries about the shape of Sanders head, without telling us where here thoughts would go. I was furious with her. She advised us to talk to the GP about it. We did, he recognized what she said but didn't think there was anything going on. But because he couldn't give us the tools that would relieve, he refferred us to the paediatrician in the local hospital. He called them for an early appointment because he didn't want us to be in such a worry for a few weeks. The paediatrician on duty said there was no reason to refer when his soft spot was not bulging and the line of his head circumference on growth chart was not bending a lot. So we were 'relieved'. Just a month later (June) when Sander had chicken-pox, the GP told us he found the shape of his head more obvious then a month ago and he advised us still to go to a paediatrician. We went to another hospital. This doctor diagnosed the symptom 'frontal bossing', didn't think there was something going on though, but made appointments for echography and x-ray for the 29th of June. If something came out of these medical examinations, he would take care of another paediatrician contact us because he himself was going on vacation for a month. Otherwise we would meet him for an appointment at 22th of July. We went to the examinations and didn't hear anything, so we were relieved, again by mistake. On the scheduled appointment he told us that he was really sorry that evidently no colleague had seen the outcomes of examination and that he just seen them before this appointment. He thought Sander suffered from bicoronal synostosis and gave us the advice to go for more examination and surgery to a neurosurgeon in University Hospital in Groningen. We were shocked and dissapointed...
Once home, I have been online on different internetsites and the more I found, the more I doubted the diagnose. That's the point where I found the craniofacial centre in Rotterdam. I got confused because I couldn't recognize the shape of Sanders head in the different types of craniosynostosis. The best fitting was the oxycephalic but this was often a craniodysynostosis, with an underlying syndrome, and somehow I wouldn't believe this. His development went great, he was rather fast than slow in development. I decided to ask the paediatrician a referral to Rotterdam in stead of Groningen because they were much better informed, experienced and capable than just a neurosurgeon in Groningen. I wanted the best for my son. He promised us to send all letters and photo's to Rotterdam. I didn't trust this a lot and furthermore, the 6 month borderline was nearby and maybe (as I read) we could get a much less radical procedure. So I called Rotterdam to make an appointment. We could get there the 15th of august. And that would be late for the less radical procedure, but the nurse practioner told me by telephone that it was already late for this kind of procedure, giving the fact that a lot of procedures had to be taken before a possibly less radical procedure within 10 day's (there cut-off in age) So, a bit angry on the delay in procedure with the paediatrician, but we had to go on so we did. On 15th of August, in 2 minutes time we heard his saggital suture was closed, so a scaphocephaly was going on, and the craniofacial surgeon said he had to be operated upon between the 9th en 12th month. It all would come out allright and there was no reason for questioning an underlying syndrome: there wasn't. There were a lot of appointments with opthalmologist, nurse practitioner, CT scan, etc. There were no complications so surgery was scheduled 10th february 2009. It was a strange time between august and february. We enjoyed our cute little charmeur, but fear got greater each day.
Sander was submitted 9th february, it was a really full day with all kinds of doctors and nurses wanting something from Sander or us. He was really stronger dan I was. I felt, "allright the figures are great so I don't have to worry but what if he belongs to the small figure in which there is some complication, or worse?'?" The week before the surgery I went to a funeral and somehow I began to think "what if we have the same thing in two weeks? I won't overcome". The fear didn't leave me, no one could comfort me.
When Sander was brought to operation room (10th feb, 8.15 am) I felt my heart broke. I was comforted by a nurse while my husband went to anaesthesia with Sander. We wandered confused through the city centre and where back at 12.30. We were called at 12.45 that surgery was successfull and that Sander did great. What a relief! We were able to visit him on IC in half an hour, with all these horrible drips, beeps and drains. It was a horrible sight, allthough not as horrible as the intense pain he visibly suffered from. He was given morphine and other strong painkilling medicine, so he was really soporific. And still he would 'get through' painkilling by painshots, in which his heartbeat would raise to 230 bpm. We were really worried it would go wrong. In the evening, though, he was more peaceful. We then heard he had torn out one of the drips of his arm when he came out of narcosis, out of pure anger. So there was a central line left and two drips in both feet. We decided we should sleep in the Ronald McDonald house nearby, made appointments when to call us and got to 'sleep'.
Next morning - he had had a peaceful night - he was really upset to see us and torn out the drips in both feet so he only had the central line to give him medicine etc. No worries because a lot of things could be removed. The drains, the monitor, etc. Later on that morning he was taken to medium care, on which he stayed in the day before surgery. Wednesday in the afternoon morphine was stopped, he now got suppository. He regularly did have pain attacks but it was less frightening then on the IC. (I now think, only because there wasn't a monitor registrating his awfully high heartbeat rate) On wednesday evening, swelling begun to be really visible.
Thursday morning, one eye was closed, due to the fact that he had been lying to one side most of the night. He was uncomfortable, but a little more Sander as we knew him from before surgery. He was able to go walking in the baby buggy, go to the hospital playroom, etc. He was eating a little, too. Thursday afternoon, the close eye was opening again.
On friday the 13th the surgeon proposed us to go home this weekend. But later on fever was running up till 39.3 and he got really ill.. Nurse practitioner didn't think it had anything to do with operation and proposed a general examination (maybe he suffered from flue, pneumonia or some other infection). He would be examined next morning. I was worried, again, but soon there was a really experienced nurse who smelled his diarrhoea and diagnosed NORO virus. He had to be isolated. On saturday morning they told us to go home: there was not a better place to recover from operation and NORO. When he wouldn't drink a lot, we could give him ORS.
So we went home (now I was a little more sure) saturday afternoon. He has been quite ill until today (Tuesday, one week after surgery) and we had to give him ORS. GP (substitute, own GP has vacation) went by to examine him, he had no worries.
And today he's doing better.... Just now I'm suffering from NORO and so my mother is... But we're heading sunshine again, in all aspects. I am aware of the fact that there's a lot of pain still to overcome, so I have to take it easy... We have to go to the checkup with the surgeon at 27th of February, just two days after Sanders 1st birthday...
Well this was a really long story... Hope you didn't fall asleep somewhere... but also hope it is a little help for people who are still on the other side... I cán say it all turned out better than I expected, allthough you might not read this above. As soon as you will see your child in some way he was before surgery, your heart will bounce again...
It was really great to tell the whole story again, allthough in English. Nice circumstance is that I wanted to tell 2 friends from Canada and one from Sweden the whole story... now I can just 'copy and paste'.
With love, Maria
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<o:p></o:p>
I got pregnant of Sander in may 2007. It was a strange pregnancy: after 4 weeks doctors told me I was carrying my baby outside my uterus, maybe in the oviduct. That's because there was nothing like an embryo in the uterus and my HcG hormone level was really high.. I was submitted in hospital to be sure I would have the help I needed when things would go wrong... Next morning, gynaecologist said he might have seen an embryo on the echo. Another echo, and yes there was something beating. It was really strange, I couldn't believe it would be right... And in my 11th I got a huge haemorrhage, so byebye... Not at all byebye, there was still life in my womb. Inconceivable...
<o:p></o:p>
It was only from the 20 week structural echo on that I believed it all would be allright with our little miracle. The rest of the pregnancy went well, no problems at all. At 36 weeks I was still doing everything. From then on I got a little swollen..
<o:p></o:p>
I was expecting February 22, but no signs at all that labour would begin. On February 24 in the evening at about 21.00 I was sure I was in labour. In the morning at about 8 I could start 'pushing' but no baby... I was brought to the local hospital and Sander was born at 11.20 am by 'vacuum pump'. He looked normal to me, and to others (like the paediatrician). He developed really great. We had some worries about his strong 'lying 'preference to which a child physiotherapist was counseled. Only 3 sessions and some practice at home were necessary to make this better.
At the 3 months checkup (May) at the infant welfare centre the doctor expressed her worries about the shape of Sanders head, without telling us where here thoughts would go. I was furious with her. She advised us to talk to the GP about it. We did, he recognized what she said but didn't think there was anything going on. But because he couldn't give us the tools that would relieve, he refferred us to the paediatrician in the local hospital. He called them for an early appointment because he didn't want us to be in such a worry for a few weeks. The paediatrician on duty said there was no reason to refer when his soft spot was not bulging and the line of his head circumference on growth chart was not bending a lot. So we were 'relieved'. Just a month later (June) when Sander had chicken-pox, the GP told us he found the shape of his head more obvious then a month ago and he advised us still to go to a paediatrician. We went to another hospital. This doctor diagnosed the symptom 'frontal bossing', didn't think there was something going on though, but made appointments for echography and x-ray for the 29th of June. If something came out of these medical examinations, he would take care of another paediatrician contact us because he himself was going on vacation for a month. Otherwise we would meet him for an appointment at 22th of July. We went to the examinations and didn't hear anything, so we were relieved, again by mistake. On the scheduled appointment he told us that he was really sorry that evidently no colleague had seen the outcomes of examination and that he just seen them before this appointment. He thought Sander suffered from bicoronal synostosis and gave us the advice to go for more examination and surgery to a neurosurgeon in University Hospital in Groningen. We were shocked and dissapointed...
Once home, I have been online on different internetsites and the more I found, the more I doubted the diagnose. That's the point where I found the craniofacial centre in Rotterdam. I got confused because I couldn't recognize the shape of Sanders head in the different types of craniosynostosis. The best fitting was the oxycephalic but this was often a craniodysynostosis, with an underlying syndrome, and somehow I wouldn't believe this. His development went great, he was rather fast than slow in development. I decided to ask the paediatrician a referral to Rotterdam in stead of Groningen because they were much better informed, experienced and capable than just a neurosurgeon in Groningen. I wanted the best for my son. He promised us to send all letters and photo's to Rotterdam. I didn't trust this a lot and furthermore, the 6 month borderline was nearby and maybe (as I read) we could get a much less radical procedure. So I called Rotterdam to make an appointment. We could get there the 15th of august. And that would be late for the less radical procedure, but the nurse practioner told me by telephone that it was already late for this kind of procedure, giving the fact that a lot of procedures had to be taken before a possibly less radical procedure within 10 day's (there cut-off in age) So, a bit angry on the delay in procedure with the paediatrician, but we had to go on so we did. On 15th of August, in 2 minutes time we heard his saggital suture was closed, so a scaphocephaly was going on, and the craniofacial surgeon said he had to be operated upon between the 9th en 12th month. It all would come out allright and there was no reason for questioning an underlying syndrome: there wasn't. There were a lot of appointments with opthalmologist, nurse practitioner, CT scan, etc. There were no complications so surgery was scheduled 10th february 2009. It was a strange time between august and february. We enjoyed our cute little charmeur, but fear got greater each day.
Sander was submitted 9th february, it was a really full day with all kinds of doctors and nurses wanting something from Sander or us. He was really stronger dan I was. I felt, "allright the figures are great so I don't have to worry but what if he belongs to the small figure in which there is some complication, or worse?'?" The week before the surgery I went to a funeral and somehow I began to think "what if we have the same thing in two weeks? I won't overcome". The fear didn't leave me, no one could comfort me.
When Sander was brought to operation room (10th feb, 8.15 am) I felt my heart broke. I was comforted by a nurse while my husband went to anaesthesia with Sander. We wandered confused through the city centre and where back at 12.30. We were called at 12.45 that surgery was successfull and that Sander did great. What a relief! We were able to visit him on IC in half an hour, with all these horrible drips, beeps and drains. It was a horrible sight, allthough not as horrible as the intense pain he visibly suffered from. He was given morphine and other strong painkilling medicine, so he was really soporific. And still he would 'get through' painkilling by painshots, in which his heartbeat would raise to 230 bpm. We were really worried it would go wrong. In the evening, though, he was more peaceful. We then heard he had torn out one of the drips of his arm when he came out of narcosis, out of pure anger. So there was a central line left and two drips in both feet. We decided we should sleep in the Ronald McDonald house nearby, made appointments when to call us and got to 'sleep'.
Next morning - he had had a peaceful night - he was really upset to see us and torn out the drips in both feet so he only had the central line to give him medicine etc. No worries because a lot of things could be removed. The drains, the monitor, etc. Later on that morning he was taken to medium care, on which he stayed in the day before surgery. Wednesday in the afternoon morphine was stopped, he now got suppository. He regularly did have pain attacks but it was less frightening then on the IC. (I now think, only because there wasn't a monitor registrating his awfully high heartbeat rate) On wednesday evening, swelling begun to be really visible.
Thursday morning, one eye was closed, due to the fact that he had been lying to one side most of the night. He was uncomfortable, but a little more Sander as we knew him from before surgery. He was able to go walking in the baby buggy, go to the hospital playroom, etc. He was eating a little, too. Thursday afternoon, the close eye was opening again.
On friday the 13th the surgeon proposed us to go home this weekend. But later on fever was running up till 39.3 and he got really ill.. Nurse practitioner didn't think it had anything to do with operation and proposed a general examination (maybe he suffered from flue, pneumonia or some other infection). He would be examined next morning. I was worried, again, but soon there was a really experienced nurse who smelled his diarrhoea and diagnosed NORO virus. He had to be isolated. On saturday morning they told us to go home: there was not a better place to recover from operation and NORO. When he wouldn't drink a lot, we could give him ORS.
So we went home (now I was a little more sure) saturday afternoon. He has been quite ill until today (Tuesday, one week after surgery) and we had to give him ORS. GP (substitute, own GP has vacation) went by to examine him, he had no worries.
And today he's doing better.... Just now I'm suffering from NORO and so my mother is... But we're heading sunshine again, in all aspects. I am aware of the fact that there's a lot of pain still to overcome, so I have to take it easy... We have to go to the checkup with the surgeon at 27th of February, just two days after Sanders 1st birthday...
Well this was a really long story... Hope you didn't fall asleep somewhere... but also hope it is a little help for people who are still on the other side... I cán say it all turned out better than I expected, allthough you might not read this above. As soon as you will see your child in some way he was before surgery, your heart will bounce again...
It was really great to tell the whole story again, allthough in English. Nice circumstance is that I wanted to tell 2 friends from Canada and one from Sweden the whole story... now I can just 'copy and paste'.
With love, Maria
<o:p></o:p>