I know two people who have had trisomy 18 babies. Neither of them carried to term. I e-mailed them today about my results and they were both concerned. Really concerned. The blood test IS just a screening and doesn't guarantee that I will have a baby with trisomy 18, but they felt that it is probably likely that I am carrying a baby with trisomy 18, especially with those odds. I told my husband about the appointment and then about what the people said. We are both just kind of numb.
It seems like I am forever waiting with this pregnancy. Now I have to wait for three weeks for amnio and at least a week after that to get results. I won't know anything definitive for a month.
I probably won't update this blog for awhile unless there is something definitive to report. At least until after my appointment. It is March 18th at 1 pm. I won't know anything until then, and probably not much that day either. It doesn't seem like it would do much good to write anything until then since it would just be posts about worrying and stressing about not knowing about whether we are going to have to make a really difficult decision.
- Andie (12 weeks 6 days)
Tuesday, February 26, 2008
Good news is that the baby looked o.k. yesterday
I had a quick appointment with my OB yesterday. He did a super quick ultrasound and said yes, I have a low-lying placenta, yes, I need to be on bedrest for a couple weeks. See you in 3 weeks.
Then I had an appointment with a maternal-fetal specialist today. That went - interesting.
He showed me my blood results in terms of the risk. My risk came back for down's syndrome with a risk of 1/150, with the cut off being 1/250 for a negative, but said that for my age, the risk of 1/150 was pretty good. Then he showed me my results for trisomy 18 and the risk was 1/10 with the cut-off being 1/100 for a negative. I was very concerned and said as much to the dr. He said "Yes, we like to see a higher number, but this part of the test has a pretty high false positive." He said that I was in between genetic tests right now - I was too far along for CVS and not far enough for amnio. Trisomy 18 is otherwise known as Edward's syndrome, and most of the babies born with it die in utero. Those that make it to birth usually die shortly after birth. It is basically not compatible with life.
He said that he would do an ultrasound today to check for any problems, but it was a little early to see anything definite in terms of markers for Trisomy 21 (Down's Syndrome) or Trisomy 18. So he did the ultrasound and he measured the head and said that it was the right size, and he could see the heart and there was a normal heartbeat (155 beats per minute), he could see all arms and legs and they were the right length, he could see the bladder, and the stomach, and he could see a nasal bone. At the end, he said that he didn't see any markers for either trisomy, particularly trisomy 21, but repeated that it was still a little early to see anything definitively. He told me that I had some options - I could come back in 3 weeks and get an amnio. I could come back in 3 weeks and have another ultrasound to look for markers, and another one at 20 weeks for markers. Or I could decide to do no further testing/screening.
I asked if I could do an ultrasound at 16 weeks and then decide after that whether I wanted to do an amnio and he said yes, we could do that, so that is the plan right now. Although the more I think about it, I think that I'm probably going to have the amnio no matter what, so that we will know for sure.
So at this point, I'll have the ultrasound/amnio in three weeks. I won't get results from the amnio for at least 10 days after that. So I have over a month before I will know whether this baby has any genetic problems, and at this point, according to my blood test, there is a 10% chance that there is. I'd be lying if I said that I wasn't worried. Really worried.
-Andie (12 weeks 6 days)
Then I had an appointment with a maternal-fetal specialist today. That went - interesting.
He showed me my blood results in terms of the risk. My risk came back for down's syndrome with a risk of 1/150, with the cut off being 1/250 for a negative, but said that for my age, the risk of 1/150 was pretty good. Then he showed me my results for trisomy 18 and the risk was 1/10 with the cut-off being 1/100 for a negative. I was very concerned and said as much to the dr. He said "Yes, we like to see a higher number, but this part of the test has a pretty high false positive." He said that I was in between genetic tests right now - I was too far along for CVS and not far enough for amnio. Trisomy 18 is otherwise known as Edward's syndrome, and most of the babies born with it die in utero. Those that make it to birth usually die shortly after birth. It is basically not compatible with life.
He said that he would do an ultrasound today to check for any problems, but it was a little early to see anything definite in terms of markers for Trisomy 21 (Down's Syndrome) or Trisomy 18. So he did the ultrasound and he measured the head and said that it was the right size, and he could see the heart and there was a normal heartbeat (155 beats per minute), he could see all arms and legs and they were the right length, he could see the bladder, and the stomach, and he could see a nasal bone. At the end, he said that he didn't see any markers for either trisomy, particularly trisomy 21, but repeated that it was still a little early to see anything definitively. He told me that I had some options - I could come back in 3 weeks and get an amnio. I could come back in 3 weeks and have another ultrasound to look for markers, and another one at 20 weeks for markers. Or I could decide to do no further testing/screening.
I asked if I could do an ultrasound at 16 weeks and then decide after that whether I wanted to do an amnio and he said yes, we could do that, so that is the plan right now. Although the more I think about it, I think that I'm probably going to have the amnio no matter what, so that we will know for sure.
So at this point, I'll have the ultrasound/amnio in three weeks. I won't get results from the amnio for at least 10 days after that. So I have over a month before I will know whether this baby has any genetic problems, and at this point, according to my blood test, there is a 10% chance that there is. I'd be lying if I said that I wasn't worried. Really worried.
-Andie (12 weeks 6 days)
Monday, February 25, 2008
Today's the day
I am 12 weeks 5 days today. This is the day in my last pregnancy when I found out that the baby had died.
Thankfully, I have a dr's appointment today, so I should be able to find out whether or not this baby is doing o.k.
It's been a wild few days. I had another bleeding episode on Thursday. With the dr. still out of town until today, they couldn't bring me in to do an ultrasound. So they ended up sending me to the hospital and going straight to radiology instead of going through the ER. The tech was looking for signs of why I was bleeding and she wasn't looking at the baby at first, and I literally almost hyperventilated with worry because I thought something was wrong with the baby. But then she went over by the baby, and the baby is fine.
The causes of the bleeding are low-lying placenta and I have a small hematoma in my placenta. The tech called over to the dr's office, and the nurse said that I needed to be on complete bedrest for two weeks. But the good news is that most of the time, as the uterus grows, the placenta moves and the bleeding stops. The bleed should heal over time too.
I'm, of course, still a little worried, but nobody seems to be overly concerned, so I'm trying to relax as much as possible.
Oh, I also got the results back from my blood test that they did during my nuchal fold test and it came back with a positive result. This is the same thing that happened to my sister a few weeks ago. The nurse said that most likely my age is the the thing that made my result come back positive, but they want to have me see a high risk dr anyway. Partly because of these results, but also because of my age, my number of miscarriages, and now this placenta issue. So I have a dr. appt with the high risk dr. tomorrow.
I will probably get an ultrasound today and again tomorrow with the high risk dr. I've certainly got plenty of peeks at this little one.
Cross your fingers that everything is still going o.k.
-Andie (12 weeks 5 days)
Thankfully, I have a dr's appointment today, so I should be able to find out whether or not this baby is doing o.k.
It's been a wild few days. I had another bleeding episode on Thursday. With the dr. still out of town until today, they couldn't bring me in to do an ultrasound. So they ended up sending me to the hospital and going straight to radiology instead of going through the ER. The tech was looking for signs of why I was bleeding and she wasn't looking at the baby at first, and I literally almost hyperventilated with worry because I thought something was wrong with the baby. But then she went over by the baby, and the baby is fine.
The causes of the bleeding are low-lying placenta and I have a small hematoma in my placenta. The tech called over to the dr's office, and the nurse said that I needed to be on complete bedrest for two weeks. But the good news is that most of the time, as the uterus grows, the placenta moves and the bleeding stops. The bleed should heal over time too.
I'm, of course, still a little worried, but nobody seems to be overly concerned, so I'm trying to relax as much as possible.
Oh, I also got the results back from my blood test that they did during my nuchal fold test and it came back with a positive result. This is the same thing that happened to my sister a few weeks ago. The nurse said that most likely my age is the the thing that made my result come back positive, but they want to have me see a high risk dr anyway. Partly because of these results, but also because of my age, my number of miscarriages, and now this placenta issue. So I have a dr. appt with the high risk dr. tomorrow.
I will probably get an ultrasound today and again tomorrow with the high risk dr. I've certainly got plenty of peeks at this little one.
Cross your fingers that everything is still going o.k.
-Andie (12 weeks 5 days)
Wednesday, February 20, 2008
Drama and Telling (m)
Well, after seeing the baby on Thursday, and starting to feel hopeful and like I really might have this baby at the end of August, then all of a sudden, it seemed like it might not happen.
We left for church and got there a few minutes before it started. I decided to go to the bathroom before it started. I was bleeding. I went back and told my husband, but decided to just hope that it would just slow down. Within a couple of minutes, I could tell that it was getting much worse, and I was really, really scared, and I was assuming the worst.
We took the kids home and called my mother-in-law to ask her to watch the children while we went to the hospital. Of course, we had to tell her why we were going. We also had to tell a couple of people at church because we both teach classes on Sunday, so we told a couple people before we left for the hospital.
The ER doc examined me and said that there was some blood but that I wasn't dilated, which was good. He sent me for an ultrasound. I was still assuming the worst. The person started the ultrasound and I couldn't see anything. I couldn't breathe. Finally, she said that the baby looked fine. She showed me the screen and there was the baby, moving around and with a heartbeat of 155. She said that she couldn't see any reason for the bleeding. The ER doc didn't seem to have any ideas where the bleeding was coming from either. They sent me home with instructions for strict bedrest for two days and no lifting for at least a week.
I told one of my best IRL (in real life) friends, and she told a couple other people who arranged to bring us dinner for this week. I finally decided that I needed to call a few more people so that it wouldn't look like I was excluding people.
It was not the way that I wanted to tell people. "Yes, we are pregnant. Yes, I'm having complications and we aren't sure if things will be o.k."
My dr. is out of town until next Monday, so the nurses said to just continue with the recommendations from the ER doc, and call if the bleeding gets worse. So far, I haven't had any bleeding since this Monday. I have an appointment on Monday to see my dr. I will be 12 weeks, 5 days. I had a dr. appointment during my last pregnancy at 12 weeks and 5 days, and that was when I found out that the baby no longer had a heartbeat. I am terrified that it is all going to happen again.
On the other hand, I'm doing everything that I can do, which isn't much. If I'm going to have a miscarriage, there isn't a lot to do to stop it. But I really hope that everything ends up o.k. I've started to become a little excited about this pregnancy. Please let everything be o.k.
-Andie (12 weeks)
We left for church and got there a few minutes before it started. I decided to go to the bathroom before it started. I was bleeding. I went back and told my husband, but decided to just hope that it would just slow down. Within a couple of minutes, I could tell that it was getting much worse, and I was really, really scared, and I was assuming the worst.
We took the kids home and called my mother-in-law to ask her to watch the children while we went to the hospital. Of course, we had to tell her why we were going. We also had to tell a couple of people at church because we both teach classes on Sunday, so we told a couple people before we left for the hospital.
The ER doc examined me and said that there was some blood but that I wasn't dilated, which was good. He sent me for an ultrasound. I was still assuming the worst. The person started the ultrasound and I couldn't see anything. I couldn't breathe. Finally, she said that the baby looked fine. She showed me the screen and there was the baby, moving around and with a heartbeat of 155. She said that she couldn't see any reason for the bleeding. The ER doc didn't seem to have any ideas where the bleeding was coming from either. They sent me home with instructions for strict bedrest for two days and no lifting for at least a week.
I told one of my best IRL (in real life) friends, and she told a couple other people who arranged to bring us dinner for this week. I finally decided that I needed to call a few more people so that it wouldn't look like I was excluding people.
It was not the way that I wanted to tell people. "Yes, we are pregnant. Yes, I'm having complications and we aren't sure if things will be o.k."
My dr. is out of town until next Monday, so the nurses said to just continue with the recommendations from the ER doc, and call if the bleeding gets worse. So far, I haven't had any bleeding since this Monday. I have an appointment on Monday to see my dr. I will be 12 weeks, 5 days. I had a dr. appointment during my last pregnancy at 12 weeks and 5 days, and that was when I found out that the baby no longer had a heartbeat. I am terrified that it is all going to happen again.
On the other hand, I'm doing everything that I can do, which isn't much. If I'm going to have a miscarriage, there isn't a lot to do to stop it. But I really hope that everything ends up o.k. I've started to become a little excited about this pregnancy. Please let everything be o.k.
-Andie (12 weeks)
Friday, February 15, 2008
Baby looks good (m)
My husband went to the ultrasound with me, which surprised me a little bit, but I was so glad that he came with me. I mean, everything was fine, but it was just nice to have him there.
At first, the baby was sleeping, which kind of concerned me, because during my last pregnancy, I went in for my NT test, and the baby was sleeping, and they could not get the baby to wake up, and then a week or so later, there was no heartbeat, and they estimated that the baby had died just a couple days after the test. But they had me suck on a peppermint candy and the baby woke up and started moving all over the place. The heartrate was 160. The baby was 5 cm, and measuring at more like 11 weeks, 6 days when I was 11 weeks, 1 day. The nuchal fold measurement was 1.7 mm, which according to my doctor is "very good". They did a blood test too, and the nuchal fold measurement will be combined with the results of the blood test and they will give me my risk of having a baby with genetic problems. I'm hoping for the best. I should have the results in a week.
We have decided to wait and find out the results from the bloodtest and to then make a decision on amnio. I think we are both leaning on not doing it at this point.
I asked to come in to the office in two weeks for a heartbeat check which would put me at just past the date of my last miscarriage. (I'll be 13 weeks in two weeks and my last miscarriage was at 12 weeks 5 days.) I'm hoping that if I hear the heartbeat then, I'll start to worry a little bit less. I can always hope, right?
Some days, I'm still like "I'm pregnant?????????"
- Andie (11 weeks, 2 days)
At first, the baby was sleeping, which kind of concerned me, because during my last pregnancy, I went in for my NT test, and the baby was sleeping, and they could not get the baby to wake up, and then a week or so later, there was no heartbeat, and they estimated that the baby had died just a couple days after the test. But they had me suck on a peppermint candy and the baby woke up and started moving all over the place. The heartrate was 160. The baby was 5 cm, and measuring at more like 11 weeks, 6 days when I was 11 weeks, 1 day. The nuchal fold measurement was 1.7 mm, which according to my doctor is "very good". They did a blood test too, and the nuchal fold measurement will be combined with the results of the blood test and they will give me my risk of having a baby with genetic problems. I'm hoping for the best. I should have the results in a week.
We have decided to wait and find out the results from the bloodtest and to then make a decision on amnio. I think we are both leaning on not doing it at this point.
I asked to come in to the office in two weeks for a heartbeat check which would put me at just past the date of my last miscarriage. (I'll be 13 weeks in two weeks and my last miscarriage was at 12 weeks 5 days.) I'm hoping that if I hear the heartbeat then, I'll start to worry a little bit less. I can always hope, right?
Some days, I'm still like "I'm pregnant?????????"
- Andie (11 weeks, 2 days)
Tuesday, February 12, 2008
Two more days
My nuchal fold ultrasound is on February 14th at 1:30 pm.
The only people who know still are my husband and my sister. We haven't decided if we will tell anyone after this ultrasound, if everything turns out o.k. I'm still so torn about telling. It seems like I've known FOREVER, but it has only been 8 weeks. And there is still SO much of the pregnancy left, if it goes full-term.
I wonder what it must be like to have a carefree pregnancy. I've never had one. My first pregnancy ended in miscarriage, way back in February 1998, and so I've always been at least a little worried every time I got pregnant. The last two pregnancies, I've worried a lot. I try not to talk about it out loud because there isn't anything that anybody can do about it. And I do try to just relax and hope for the best. But it is hard.
-Andie (10W6D, I got a new due date and so I am further along than I thought)
The only people who know still are my husband and my sister. We haven't decided if we will tell anyone after this ultrasound, if everything turns out o.k. I'm still so torn about telling. It seems like I've known FOREVER, but it has only been 8 weeks. And there is still SO much of the pregnancy left, if it goes full-term.
I wonder what it must be like to have a carefree pregnancy. I've never had one. My first pregnancy ended in miscarriage, way back in February 1998, and so I've always been at least a little worried every time I got pregnant. The last two pregnancies, I've worried a lot. I try not to talk about it out loud because there isn't anything that anybody can do about it. And I do try to just relax and hope for the best. But it is hard.
-Andie (10W6D, I got a new due date and so I am further along than I thought)
Friday, February 08, 2008
My dr's office called the other day
and they had me on the schedule with the nurse practicioner, and she is out now on maternity leave and needed to reschedule my appointment. I was afraid that they would make me wait another week, but they changed it from February 15th to February 14th. I will be 10 weeks 6 days on the 14th.
I'm still so stressed out that I'm going to go in and there won't be a heartbeat. I've felt this way every time I've gone in during this pregnancy, and it has always been o.k. But having my last pregnancy end in a miscarriage at 12 weeks and 5 days, well, it does strange things to your mind. I don't think that I'll be able to really relax and feel like I'm going to have a baby until I get past that date. Now my worry is that nipples don't hurt any more, and I feel smaller than I did a few days ago. That was one of my signs that something was wrong last time.
But there isn't really anything I can do but just wait. I haven't had any bleeding or spotting, and if I went in now for an ultrasound, then I'd have to go back in a week to do my NT test because right now, it would still be too early to do it. So I'm better off just waiting the six days and going to appointment. I just keep praying that I'm wrong, and that everything is o.k.
-Andie (10 weeks)
I'm still so stressed out that I'm going to go in and there won't be a heartbeat. I've felt this way every time I've gone in during this pregnancy, and it has always been o.k. But having my last pregnancy end in a miscarriage at 12 weeks and 5 days, well, it does strange things to your mind. I don't think that I'll be able to really relax and feel like I'm going to have a baby until I get past that date. Now my worry is that nipples don't hurt any more, and I feel smaller than I did a few days ago. That was one of my signs that something was wrong last time.
But there isn't really anything I can do but just wait. I haven't had any bleeding or spotting, and if I went in now for an ultrasound, then I'd have to go back in a week to do my NT test because right now, it would still be too early to do it. So I'm better off just waiting the six days and going to appointment. I just keep praying that I'm wrong, and that everything is o.k.
-Andie (10 weeks)
Monday, February 04, 2008
Everything is fine so far
I was overreacting. The dr. started the ultrasound, and he wasn't saying anything right away, and I had a moment of panic, but then the nurse said "See the heartbeat right there?" The dr. said that the heartrate was 160 and the baby looked like it was growing right on track. It definitely looked bigger than last time.
11 days until my next appointment. They will be doing a nuchal fold test at that appointment where they measure the neck fold during the ultrasound. The measurement should be under 3 mm. If it is around or above 3 mm, it indicates a possibility of down's syndrome or other genetic problems. They also do a blood test and combined the two tests to give you a fairly accurate look at the possibility of down's syndrome. I know that at my age (41), my risk is around 1 out of 100 chance that my child will have down's syndrome.
I haven't decided yet whether I will have an amnio. At first, I figured that I would if the pregnancy made to 14-15 weeks. Now, I'm debating about it. If my nuchal fold test comes back positive, I definitely will. But if my nuchal fold test comes back with little risk, I may not. I'm so confused.
I also am not sure when I want to tell people, especially family. My sister knows, and my husband, but no one else does. My parents will worry, and my in-laws will think that it wasn't responsible given our financial situation. Some days, I want to tell people around 12 weeks, but I probably should wait. I feel like I've known forever.
I am trying not to be consumed with worry and to just live my life, but it is tough some days. There IS a lot to worry about. There is the concern about whether I will have another miscarriage, whether the baby will have any problems, whether the baby will make it to full term and that's just until the baby is born. Then I have to worry about how we will afford everything we need for a baby, and I'll have to take care of a newborn again, and worrying about whether I need to get a job, etc., etc.
On a positive note, my sister is 20 weeks now and all seems to be going well.
-Andie (9W3D)
11 days until my next appointment. They will be doing a nuchal fold test at that appointment where they measure the neck fold during the ultrasound. The measurement should be under 3 mm. If it is around or above 3 mm, it indicates a possibility of down's syndrome or other genetic problems. They also do a blood test and combined the two tests to give you a fairly accurate look at the possibility of down's syndrome. I know that at my age (41), my risk is around 1 out of 100 chance that my child will have down's syndrome.
I haven't decided yet whether I will have an amnio. At first, I figured that I would if the pregnancy made to 14-15 weeks. Now, I'm debating about it. If my nuchal fold test comes back positive, I definitely will. But if my nuchal fold test comes back with little risk, I may not. I'm so confused.
I also am not sure when I want to tell people, especially family. My sister knows, and my husband, but no one else does. My parents will worry, and my in-laws will think that it wasn't responsible given our financial situation. Some days, I want to tell people around 12 weeks, but I probably should wait. I feel like I've known forever.
I am trying not to be consumed with worry and to just live my life, but it is tough some days. There IS a lot to worry about. There is the concern about whether I will have another miscarriage, whether the baby will have any problems, whether the baby will make it to full term and that's just until the baby is born. Then I have to worry about how we will afford everything we need for a baby, and I'll have to take care of a newborn again, and worrying about whether I need to get a job, etc., etc.
On a positive note, my sister is 20 weeks now and all seems to be going well.
-Andie (9W3D)
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