for one and all > Sharing your stories?
January 31, 2010 |
Paula
Paula
My blog is here: http://watchinggeordielife.blogspot.com/
It used to be a cheerful, chatty blog talking about my life in Newcastle (North East of England). Not any more. December and Jan posts are nearly all about the loss of the baby and how I'm coping with it.
The closest I've got to posting the details is here http://newcastleupontynedailyphoto.com/index.php/2009/11/27/no-photos-this-weekend-sad-news/ but I've never really done one post telling the whole story. Basically, we had a routine midwife's appointment at 17 weeks and the midwife couldn't find a heartbeat. She didn't think anything was really wrong (I've asked her since and she said if she'd suspected the worst she would have told us so we could have prepared ourselves for that possibility) but referred us to the hospital anyway. They gave us a scan after we waited round for hours. They told us in the ultrasound room that there was no heartbeat and the baby only measured 13 weeks. There had been no signs that anything was wrong. I'd never had any bleeding, any pain, anything.
I had even thought, the few days before, that I was starting to feel the baby starting to move around. I knew it was early but... what more is there to say? I thought I could feel movement. One of the many reasons that I felt so stupid not to have suspected something was wrong.
Because the baby died at 13 weeks, it's counted as an early miscarriage and isn't investigated in the UK. But because I didn't find out until 17 weeks, to me... it feels more like a stillbirth than anything else. I thought.... we'd had a healthy scan at 12 weeks. The heartbeat was healthy at that point. I thought we were home clear. That it was just a matter of time.
Not sure if you realise but if you click on people's names, if they have put in their blog URL it will show up there. But not everyone does have a blog or anything and not everyone links it from here if they do.
As we never got to find out if it was a boy or a girl we couldn't name our baby. That's really hard for me, but my husband's glad not to know. Ironic, because we had disagreed strongly about whether to find out the sex of the baby at the 20 week scan (he wanted to, I didn't). Now, I just wish I could have known so much.
Thank you for asking us all to share. It hurts to tell the story, but I want to tell it still x
It used to be a cheerful, chatty blog talking about my life in Newcastle (North East of England). Not any more. December and Jan posts are nearly all about the loss of the baby and how I'm coping with it.
The closest I've got to posting the details is here http://newcastleupontynedailyphoto.com/index.php/2009/11/27/no-photos-this-weekend-sad-news/ but I've never really done one post telling the whole story. Basically, we had a routine midwife's appointment at 17 weeks and the midwife couldn't find a heartbeat. She didn't think anything was really wrong (I've asked her since and she said if she'd suspected the worst she would have told us so we could have prepared ourselves for that possibility) but referred us to the hospital anyway. They gave us a scan after we waited round for hours. They told us in the ultrasound room that there was no heartbeat and the baby only measured 13 weeks. There had been no signs that anything was wrong. I'd never had any bleeding, any pain, anything.
I had even thought, the few days before, that I was starting to feel the baby starting to move around. I knew it was early but... what more is there to say? I thought I could feel movement. One of the many reasons that I felt so stupid not to have suspected something was wrong.
Because the baby died at 13 weeks, it's counted as an early miscarriage and isn't investigated in the UK. But because I didn't find out until 17 weeks, to me... it feels more like a stillbirth than anything else. I thought.... we'd had a healthy scan at 12 weeks. The heartbeat was healthy at that point. I thought we were home clear. That it was just a matter of time.
Not sure if you realise but if you click on people's names, if they have put in their blog URL it will show up there. But not everyone does have a blog or anything and not everyone links it from here if they do.
As we never got to find out if it was a boy or a girl we couldn't name our baby. That's really hard for me, but my husband's glad not to know. Ironic, because we had disagreed strongly about whether to find out the sex of the baby at the 20 week scan (he wanted to, I didn't). Now, I just wish I could have known so much.
Thank you for asking us all to share. It hurts to tell the story, but I want to tell it still x
January 31, 2010 |
B
B
I'll just summarize. It's all over the place (you can find my blog by clicking on my name).
Long ago, I had a missed miscarriage. It was an unplanned and not particularly welcome pregnancy, and I have to admit we were discussing termination. I wonder sometimes if everything since then has been a punishment, but I don't think I really believe that. It was a great relief when I was no longer pregnant, and I believed it was an answer to a prayer.
We planned to start trying in summer 2007, and that January we realized we couldn't afford it financially. So we pushed it back a year. It was kind of a tough year because all my friends were having their first kids and I was envious and felt left out.
Come May 2008, we finally started trying. No go first 2 cycles, 3rd cycle was anovulatory, but the 4th cycle did the trick. We joked that we would be teased a lot because conception occurred right around the same time we got hit by Hurricane Ike. We called the baby Chickadee and we knew this was it. Except I never had a totally comfortable feeling. Looking back, I was terrified from about 5 weeks on. A spotting episode at 8 weeks increased the fear, and at 9 weeks I had an appointment with my midwife and she was worried. A blood draw revealed that the levels were way off what they should be, and an u/s the following day confirmed that there was no baby. Sac developed to 7 weeks, there was no measurable CRL; whether it was a blighted ovum or simply arrested development about 5 weeks we don't know. Nevertheless, miscarriage.
I took misoprostol, passed everything over the course of a few days and we were told we could start ttc again right away, since we hadn't had surgery. So we did.
I got pregnant again immediately, but it was abnormal from the start. I had a huge temp drop followed by a faint positive test and my period arrived later that day. Full period - not just a little spotting. Positive tests continued. Blood draw said clinically pregnant, but the level was far too low. We figured chemical pregnancy, but a few days after my period ended I started spotting again. And I took another test and it still said pregnant. Had another blood draw - levels went up, but again, nowhere near enough.
Repeat this cycle for 3 weeks, levels are still under 1000, but the numbers keep increasing. We know it's abnormal, but can't figure out what is going on. U/s shows a totally normal pelvic u/s. Another 2 weeks, and I'm finally sent to an OB, who diagnoses a cervical pregnancy. Methotrexate and orders to wait to try again until we've had a full cycle. Others tell us that we should wait 12 weeks. It ends up being a moot point, given how long it takes hcg to return to 0. Doc never followed up and because I loathed him, I didn't press it. We thought it was just bad luck (cervical pregnancy accounts for less than 1% of ectopic pregnancies - so rare that they don't even have good research about the causes), so there was no reason to change anything or do tests - the losses were chalked up to bad luck and that was that.
I got pregnant again the first cycle we really tried, and it was scary and awful, but early on, things were fine. Development proceeded as expected, I started to relax, and then one Saturday evening about 9 weeks, I was reading in bed. Felt something odd, got up to go to the bathroom and completely out of nowhere, passed a large clot in a gush of red blood. The bleeding stopped pretty quickly, but of course we were terrified. MW sent us to the ER, where we found a steady normal heartbeat and development to dates. No explanations. We got a doppler and started hearing the heartbeat ourselves within 3 weeks.
At 12 weeks, again, out of nowhere, a sudden gush of bright red blood. Again, it stopped quickly and we got home and heard the h/b, but of course we were still terrified. U/s showed perfect development, low lying placenta, but no clear cause. N/T scan a few days later was the same. That was the first time we heard maybe boy and we were stunned, having expected a girl (except for one moment where I was doodling the names we'd chosen and Gwendolyn was simply wrong).
15 weeks, things are seemingly well, and then again, poof, out of nowhere, I pass a huge clot (the size of a chicken egg) in a gush of red blood, and the bleeding continues for a longer time. The mw threw her hands in the air and got me an appt with her backup OB, who diagnosed a partial placenta previa and said the baby was causing the bleeding by using the portion of the placenta over the cervix as a trampoline. That the bleeding would continue until the placenta moved, but really, we were doing ok, it should move on it's own, take it easy and I was most welcome to continue seeing my mw.
Bleeding continued over the next few weeks and it is hard to remember how we lived during this time. Every episode was the same - passing a large clot in a gush of blood. Heavy bleeding stopped as soon as the clot passed, but I would continue to have light bleeding and spotting until the next episode. Every one was terrifying, but I became used to it and tried to evaluate the amount of bleeding to know if we were in danger. We had the doppler so we always knew baby was fine. Still, there were times the bleeding was so heavy and sudden that I would fill a pad and have blood dripping down my legs. We didn't really leave the house because we tried once and I passed a clot while waiting in the line and the mess by the time we got home still makes me shudder. Our bathroom looked like a horror movie set and I cried while my husband helped wipe blood off me. Still, we kept being told things were going to be fine. I saw the OB a couple more times, the last time after I spent a weekend passing large clot after large clot (the largest the size of the palm of my hand). I kept saying it wasn't normal, but they kept insisting it was.
Then things seemed to get a little better. I hadn't had an episode in over a week and I hit 20 weeks and we had our big u/s and it was definitely boy and the previa was cleared, and we said hello to Gabriel and started to feel really optimistic. Even went clothes shopping, because we knew things would be fine now. For the first time I felt safe.
Four perfect days. Then a bad night and a morning in which I thought my water had broken, and I had a terrible feeling all day. Gabriel was born that night. That story can be found on the previous page of discussions here, in a post entitled 'What happens when the people you trust let you down?" That is one part I don't like repeating. At all. We were betrayed by our caregivers.
We know now, from my new OB who is sympathetic and very proactive and did a million tests, that my cervix was damaged from the ectopic pregnancy and there was likely not much we could have done, especially since we think that MTHFR had a role in abnormal placental placement/development and that I had had an early abruption that never fully healed (we think the continued bleeding/clotting was a result of my body fighting to heal the placenta and failing). It's likely the pregnancy was doomed from early on, but we will never know for certain.
At least now we can we try to prevent some of this stuff from happening again. I'm taking baby aspirin, extra vit B-6, vit B-12, folic acid. . . I'll have more frequent monitoring (u/s every two weeks or more), be seen by MFMs, have a preventative cerclage. . . and we just have to hope it's enough next time. I guess we're lucky in that we seem to have few problems getting sperm and egg to meet, it's the after part that is messed up.
I just had a chemical pregnancy last cycle to add to the fun.
So, that is really long, and I'm sorry. It actually helps me to type it out and keep it straight. I can see where we might have done things differently, but it does help reassure me that we probably did the best we could.
Long ago, I had a missed miscarriage. It was an unplanned and not particularly welcome pregnancy, and I have to admit we were discussing termination. I wonder sometimes if everything since then has been a punishment, but I don't think I really believe that. It was a great relief when I was no longer pregnant, and I believed it was an answer to a prayer.
We planned to start trying in summer 2007, and that January we realized we couldn't afford it financially. So we pushed it back a year. It was kind of a tough year because all my friends were having their first kids and I was envious and felt left out.
Come May 2008, we finally started trying. No go first 2 cycles, 3rd cycle was anovulatory, but the 4th cycle did the trick. We joked that we would be teased a lot because conception occurred right around the same time we got hit by Hurricane Ike. We called the baby Chickadee and we knew this was it. Except I never had a totally comfortable feeling. Looking back, I was terrified from about 5 weeks on. A spotting episode at 8 weeks increased the fear, and at 9 weeks I had an appointment with my midwife and she was worried. A blood draw revealed that the levels were way off what they should be, and an u/s the following day confirmed that there was no baby. Sac developed to 7 weeks, there was no measurable CRL; whether it was a blighted ovum or simply arrested development about 5 weeks we don't know. Nevertheless, miscarriage.
I took misoprostol, passed everything over the course of a few days and we were told we could start ttc again right away, since we hadn't had surgery. So we did.
I got pregnant again immediately, but it was abnormal from the start. I had a huge temp drop followed by a faint positive test and my period arrived later that day. Full period - not just a little spotting. Positive tests continued. Blood draw said clinically pregnant, but the level was far too low. We figured chemical pregnancy, but a few days after my period ended I started spotting again. And I took another test and it still said pregnant. Had another blood draw - levels went up, but again, nowhere near enough.
Repeat this cycle for 3 weeks, levels are still under 1000, but the numbers keep increasing. We know it's abnormal, but can't figure out what is going on. U/s shows a totally normal pelvic u/s. Another 2 weeks, and I'm finally sent to an OB, who diagnoses a cervical pregnancy. Methotrexate and orders to wait to try again until we've had a full cycle. Others tell us that we should wait 12 weeks. It ends up being a moot point, given how long it takes hcg to return to 0. Doc never followed up and because I loathed him, I didn't press it. We thought it was just bad luck (cervical pregnancy accounts for less than 1% of ectopic pregnancies - so rare that they don't even have good research about the causes), so there was no reason to change anything or do tests - the losses were chalked up to bad luck and that was that.
I got pregnant again the first cycle we really tried, and it was scary and awful, but early on, things were fine. Development proceeded as expected, I started to relax, and then one Saturday evening about 9 weeks, I was reading in bed. Felt something odd, got up to go to the bathroom and completely out of nowhere, passed a large clot in a gush of red blood. The bleeding stopped pretty quickly, but of course we were terrified. MW sent us to the ER, where we found a steady normal heartbeat and development to dates. No explanations. We got a doppler and started hearing the heartbeat ourselves within 3 weeks.
At 12 weeks, again, out of nowhere, a sudden gush of bright red blood. Again, it stopped quickly and we got home and heard the h/b, but of course we were still terrified. U/s showed perfect development, low lying placenta, but no clear cause. N/T scan a few days later was the same. That was the first time we heard maybe boy and we were stunned, having expected a girl (except for one moment where I was doodling the names we'd chosen and Gwendolyn was simply wrong).
15 weeks, things are seemingly well, and then again, poof, out of nowhere, I pass a huge clot (the size of a chicken egg) in a gush of red blood, and the bleeding continues for a longer time. The mw threw her hands in the air and got me an appt with her backup OB, who diagnosed a partial placenta previa and said the baby was causing the bleeding by using the portion of the placenta over the cervix as a trampoline. That the bleeding would continue until the placenta moved, but really, we were doing ok, it should move on it's own, take it easy and I was most welcome to continue seeing my mw.
Bleeding continued over the next few weeks and it is hard to remember how we lived during this time. Every episode was the same - passing a large clot in a gush of blood. Heavy bleeding stopped as soon as the clot passed, but I would continue to have light bleeding and spotting until the next episode. Every one was terrifying, but I became used to it and tried to evaluate the amount of bleeding to know if we were in danger. We had the doppler so we always knew baby was fine. Still, there were times the bleeding was so heavy and sudden that I would fill a pad and have blood dripping down my legs. We didn't really leave the house because we tried once and I passed a clot while waiting in the line and the mess by the time we got home still makes me shudder. Our bathroom looked like a horror movie set and I cried while my husband helped wipe blood off me. Still, we kept being told things were going to be fine. I saw the OB a couple more times, the last time after I spent a weekend passing large clot after large clot (the largest the size of the palm of my hand). I kept saying it wasn't normal, but they kept insisting it was.
Then things seemed to get a little better. I hadn't had an episode in over a week and I hit 20 weeks and we had our big u/s and it was definitely boy and the previa was cleared, and we said hello to Gabriel and started to feel really optimistic. Even went clothes shopping, because we knew things would be fine now. For the first time I felt safe.
Four perfect days. Then a bad night and a morning in which I thought my water had broken, and I had a terrible feeling all day. Gabriel was born that night. That story can be found on the previous page of discussions here, in a post entitled 'What happens when the people you trust let you down?" That is one part I don't like repeating. At all. We were betrayed by our caregivers.
We know now, from my new OB who is sympathetic and very proactive and did a million tests, that my cervix was damaged from the ectopic pregnancy and there was likely not much we could have done, especially since we think that MTHFR had a role in abnormal placental placement/development and that I had had an early abruption that never fully healed (we think the continued bleeding/clotting was a result of my body fighting to heal the placenta and failing). It's likely the pregnancy was doomed from early on, but we will never know for certain.
At least now we can we try to prevent some of this stuff from happening again. I'm taking baby aspirin, extra vit B-6, vit B-12, folic acid. . . I'll have more frequent monitoring (u/s every two weeks or more), be seen by MFMs, have a preventative cerclage. . . and we just have to hope it's enough next time. I guess we're lucky in that we seem to have few problems getting sperm and egg to meet, it's the after part that is messed up.
I just had a chemical pregnancy last cycle to add to the fun.
So, that is really long, and I'm sorry. It actually helps me to type it out and keep it straight. I can see where we might have done things differently, but it does help reassure me that we probably did the best we could.
January 31, 2010 |
eliza
eliza
Oh, B. Honey. Have you considered naming the baby anyway? Maybe a more androgynous or unisex name like Taylor or Dallas or something? It might be healing for you to have a name to call your child.
January 31, 2010 |
eliza
eliza
Thank you Eliza. II would love to give the baby a name, but the husband can't face doing anything like that, and I don't want to give the baby a name he doesn't know. It would just feel wrong. Of course, in a universe where everything is wrong, what's one more to add to the list... but something that divides us like that just scares me.
Your story is heartbreaking, it really is. I don't know how you keep going. Losing just one baby has devastated me. After so many losses you still have the time and the heart to be kind to other people... Thank you honey xx
Your story is heartbreaking, it really is. I don't know how you keep going. Losing just one baby has devastated me. After so many losses you still have the time and the heart to be kind to other people... Thank you honey xx
January 31, 2010 |
B
B
Thanks so much for posting your stories or links to your stories. I am honored you were willing to share your loss with me.
Paula, I'm so sorry your Devyn's loss and now the recent IVF cycle. Will and Abby are the result of IVF as well. Though we have two embabies frozen, I have been advised that I should no longer attempt pregnancy, as I have been very ill, have PTL issues and now Will's death on top of it. Infertility is a loss unto itself, adding a lost baby to it is that much more devastating.
B, I'm sorry you didn't get to name your baby. I have a lot of guilt about not naming our twins before Will died. We were just sort of hemming and hawing about it. On the way home from learning that our son died, we named Will as we drove over the Mississippi River. I will never forget that. It is one of my greatest regrets he only had a name once he died.
Eliza, I'm so sorry for your muliple losses. I was thinking about MTHFR while I was reading your story. I don't have that particular clotting issue, but i have many risk factors for clotting issues and took baby aspirin with my son and with the twins. Have you ever consulted with a reproductive endocrinologist? I know that conceiving is not problematic for you, but they also specialize in multiple losses. Baby aspirin is one way to deal with clotting factors, but I also have friends who've required stronger blood thinners and also something called 'intralipid therapy' to sustain a healthy pregnancy. Just let me know if you want more information on these things, I don't mean to shove them in your face, as I get frustrated when people always try to give me 'little fix-it' type things with my own infertility.
Hugs to you all.
Paula, I'm so sorry your Devyn's loss and now the recent IVF cycle. Will and Abby are the result of IVF as well. Though we have two embabies frozen, I have been advised that I should no longer attempt pregnancy, as I have been very ill, have PTL issues and now Will's death on top of it. Infertility is a loss unto itself, adding a lost baby to it is that much more devastating.
B, I'm sorry you didn't get to name your baby. I have a lot of guilt about not naming our twins before Will died. We were just sort of hemming and hawing about it. On the way home from learning that our son died, we named Will as we drove over the Mississippi River. I will never forget that. It is one of my greatest regrets he only had a name once he died.
Eliza, I'm so sorry for your muliple losses. I was thinking about MTHFR while I was reading your story. I don't have that particular clotting issue, but i have many risk factors for clotting issues and took baby aspirin with my son and with the twins. Have you ever consulted with a reproductive endocrinologist? I know that conceiving is not problematic for you, but they also specialize in multiple losses. Baby aspirin is one way to deal with clotting factors, but I also have friends who've required stronger blood thinners and also something called 'intralipid therapy' to sustain a healthy pregnancy. Just let me know if you want more information on these things, I don't mean to shove them in your face, as I get frustrated when people always try to give me 'little fix-it' type things with my own infertility.
Hugs to you all.
January 31, 2010 |
Eve
Eve
My blog is http://aftermatilda.blogspot.com/
I haven't posted our full story on there yet but here it is (it's pretty long and complicated).
We got married and got pregnant straight away - couldn't believe how lucky we were and that we'd have a baby by Christmas. 12 week scan was fine so we were just ticking along.
20 weeks scan - we found out the baby had an omphalocele (part of her small bowel was outside her body in a sac). There's a high association between these and down's syndrome so we had an amino. It was an awful awful week. But then we found out the baby didn't have down's and was a girl. So we thought it was just the omphalocele which would need a minor surgery to fix after she was born.
We started having 4 weekly scans at this point and being managed by the fetal medicine unit.
24 weeks - the scan show's theres a lot of fluid trapped around the bowel. The specialist is concerned and thinks this might indicate there's been some damage to the bowel and she may lose a portion of it after birth. So I'm a mess again. But there's nothing that can be done at this stage except hope for the best and in the long term it's still most likely things will be fine. I actually asked at the scan 'what are the chances of thing going very wrong at this stage?' and the doctor said 'very low'.
26 weeks - diagnosed with gestational diabetes and my ob tells me I'm carrying a lot of extra fluid that has her a bit worried about the baby.
28 weeks - find out our baby has enlarged livers and kidneys, large adominal circumference, and protruding tounge. She has a rare genetic syndrome (Beckwith Wiedemann Syndrome). Find out there's a occurrence rate of 1 in 14 000 and freak out. Then read about the syndrome and find out that while there's complications at the start, most babies with this go on to lead happy healthy lives. Calm down, join support group, and carry on with pregnancy. At increased risk of pre-eclampsia due to BWS.
See social worker and baby doctors.
29 weeks - get pre-eclampsia, admitted to hospital and given steroid shots. Ob talking about delivering in next couple of days.
29 - 34 weeks - pre-eclampsia stays pretty stable. Spend all of this time except 4 days in hospital. As pregnancy continues, starts to look like we're going to get to a good gestation and actually start feeling excited and like we're really going to have a baby at the end of this.
34 weeks exactly - baby stops moving, CTG completely flat (heartbeat strong but no variation) so delivered by emergency c-section at 11.44pm. All happens very quickly and feels very surreal.
She was taken straight to the resus room - we knew this was going to happen so weren't panicing. The specialists were all there waiting for her. DH got taken out to see her and after that I was taken to recoverey. They told us the sac around the ompholocele had burst and she would need surgery that night.
After recovery, I was wheeled into the nursery to see her. She was beautiful and just lying there. We went back to the ward, signed consent papers, and waited. At 4am the surgeon called and said the surgery had gone well and her bowel looked good and he was hopeful she wouldn't need more surgery on it. This was a huge relief because it had been this big question mark the whole pregnancy.
We next saw her about lunchtime that day - the doctor explained she'd had a pretty rough first night with the surgery, severe hypogylcemia, and low blood pressure. She was on a bunch of medication but stable at this point. She was waving her arms and legs around and we just thought it'd be a matter time from this point.
The next day (Sunday) was much the same and then that night her hypoglycemia reoccured, a lung started to bleed, and her blood pressure dropped. It was awful but then she stablised again - she was going to need to have part of her pancreus removed at some stage but they were hoping to put it off for a while if her gut was working. So we recovered but I realised the NICU was going to be pretty scarey and up and down (that was Monday).
On Tuesday morning things were very bad - the lung bleed has restarted and her blood pressure was dropping. There were heaps of doctors around. About mid-morning we were told there was a chance she might not make it and did we want to get her baptised. We did, our families came, and after that we were told that she was going to die and the best thing we could do was hold her. I held her on the ventilator and then DH did, after that I held her while they removed the ventilator and she died a couple of minutes later.
Sometimes I still can't believe all of this happened to us and our baby died. Three months ago today she was alive.
Maddie x
I haven't posted our full story on there yet but here it is (it's pretty long and complicated).
We got married and got pregnant straight away - couldn't believe how lucky we were and that we'd have a baby by Christmas. 12 week scan was fine so we were just ticking along.
20 weeks scan - we found out the baby had an omphalocele (part of her small bowel was outside her body in a sac). There's a high association between these and down's syndrome so we had an amino. It was an awful awful week. But then we found out the baby didn't have down's and was a girl. So we thought it was just the omphalocele which would need a minor surgery to fix after she was born.
We started having 4 weekly scans at this point and being managed by the fetal medicine unit.
24 weeks - the scan show's theres a lot of fluid trapped around the bowel. The specialist is concerned and thinks this might indicate there's been some damage to the bowel and she may lose a portion of it after birth. So I'm a mess again. But there's nothing that can be done at this stage except hope for the best and in the long term it's still most likely things will be fine. I actually asked at the scan 'what are the chances of thing going very wrong at this stage?' and the doctor said 'very low'.
26 weeks - diagnosed with gestational diabetes and my ob tells me I'm carrying a lot of extra fluid that has her a bit worried about the baby.
28 weeks - find out our baby has enlarged livers and kidneys, large adominal circumference, and protruding tounge. She has a rare genetic syndrome (Beckwith Wiedemann Syndrome). Find out there's a occurrence rate of 1 in 14 000 and freak out. Then read about the syndrome and find out that while there's complications at the start, most babies with this go on to lead happy healthy lives. Calm down, join support group, and carry on with pregnancy. At increased risk of pre-eclampsia due to BWS.
See social worker and baby doctors.
29 weeks - get pre-eclampsia, admitted to hospital and given steroid shots. Ob talking about delivering in next couple of days.
29 - 34 weeks - pre-eclampsia stays pretty stable. Spend all of this time except 4 days in hospital. As pregnancy continues, starts to look like we're going to get to a good gestation and actually start feeling excited and like we're really going to have a baby at the end of this.
34 weeks exactly - baby stops moving, CTG completely flat (heartbeat strong but no variation) so delivered by emergency c-section at 11.44pm. All happens very quickly and feels very surreal.
She was taken straight to the resus room - we knew this was going to happen so weren't panicing. The specialists were all there waiting for her. DH got taken out to see her and after that I was taken to recoverey. They told us the sac around the ompholocele had burst and she would need surgery that night.
After recovery, I was wheeled into the nursery to see her. She was beautiful and just lying there. We went back to the ward, signed consent papers, and waited. At 4am the surgeon called and said the surgery had gone well and her bowel looked good and he was hopeful she wouldn't need more surgery on it. This was a huge relief because it had been this big question mark the whole pregnancy.
We next saw her about lunchtime that day - the doctor explained she'd had a pretty rough first night with the surgery, severe hypogylcemia, and low blood pressure. She was on a bunch of medication but stable at this point. She was waving her arms and legs around and we just thought it'd be a matter time from this point.
The next day (Sunday) was much the same and then that night her hypoglycemia reoccured, a lung started to bleed, and her blood pressure dropped. It was awful but then she stablised again - she was going to need to have part of her pancreus removed at some stage but they were hoping to put it off for a while if her gut was working. So we recovered but I realised the NICU was going to be pretty scarey and up and down (that was Monday).
On Tuesday morning things were very bad - the lung bleed has restarted and her blood pressure was dropping. There were heaps of doctors around. About mid-morning we were told there was a chance she might not make it and did we want to get her baptised. We did, our families came, and after that we were told that she was going to die and the best thing we could do was hold her. I held her on the ventilator and then DH did, after that I held her while they removed the ventilator and she died a couple of minutes later.
Sometimes I still can't believe all of this happened to us and our baby died. Three months ago today she was alive.
Maddie x
January 31, 2010 |
Maddie
Maddie
I don't have a public blog, or at least, not one that tells this story.
My first pregnancy was a chemical pregnancy or a very early loss, over by 6 weeks. I thought it was devastating at the time. My second, thankfully, was uneventful and healthy and my son Noah is now 2.
This recent pregnancy was totally textbook - same morning sickness as with Noah, otherwise an easy, low-risk pregnancy. I used the same amazing midwives who delivered Noah and once we were past 20 weeks or so, I thought everything was safe and that we'd bring a baby home. About three weeks ago, on a Thursday, I had my 36 week appointment and we took a peek at the baby with ultrasound just to check position. He was perfect - head down, thumb to his mouth, strong heartbeat. Sometime later that day, he died - we'll never know why.
I noticed that he wasn't moving and knew right away that he was gone, even before we went in to be checked the next night. I was then induced on Saturday morning - Micah was born just before midnight Sunday night, 7 pounds, 8 ounces and with no clues as to why he died. I will say that we had incredibly compassionate and competent midwife care the entire time - if we go back down this road and try again, I would want the same caregivers with me. We left the hospital that morning and buried Micah that Friday. I haven't been back to see the grave yet, but it across the street from Noah's preschool, so I drive by it everyday - it crushes me every time.
Now it's three weeks later. Tomorrow was supposed to be my first day of leave and instead, I'm going back to work on Tuesday. We're crushed and heartbroken and confused and I've been reading the stories and posts here over and over, trying to figure out if anyone else has ever found peace again.
My first pregnancy was a chemical pregnancy or a very early loss, over by 6 weeks. I thought it was devastating at the time. My second, thankfully, was uneventful and healthy and my son Noah is now 2.
This recent pregnancy was totally textbook - same morning sickness as with Noah, otherwise an easy, low-risk pregnancy. I used the same amazing midwives who delivered Noah and once we were past 20 weeks or so, I thought everything was safe and that we'd bring a baby home. About three weeks ago, on a Thursday, I had my 36 week appointment and we took a peek at the baby with ultrasound just to check position. He was perfect - head down, thumb to his mouth, strong heartbeat. Sometime later that day, he died - we'll never know why.
I noticed that he wasn't moving and knew right away that he was gone, even before we went in to be checked the next night. I was then induced on Saturday morning - Micah was born just before midnight Sunday night, 7 pounds, 8 ounces and with no clues as to why he died. I will say that we had incredibly compassionate and competent midwife care the entire time - if we go back down this road and try again, I would want the same caregivers with me. We left the hospital that morning and buried Micah that Friday. I haven't been back to see the grave yet, but it across the street from Noah's preschool, so I drive by it everyday - it crushes me every time.
Now it's three weeks later. Tomorrow was supposed to be my first day of leave and instead, I'm going back to work on Tuesday. We're crushed and heartbroken and confused and I've been reading the stories and posts here over and over, trying to figure out if anyone else has ever found peace again.
January 31, 2010 |
turtle
turtle
Maddie,
What a horrible rollercoaster you were on during your pregnancy. I'm so very sorry that your little girl did not survive despite what sounds like a bitter fight. I cannot believe I have a 'dead baby' either. It almost seems like I just made it up or something.
Turtle, How utterly devastating for you and your familly. We don't have any answers as to why Will died either (his u/s scan always appeared perfectedly healthy with a healthy hearbeat and development). I think no knowing what happened will always haunt me. As will the thought that my Will died in me and I didn't even know it at first. That thought hurts my heart so deeply. I have a friend who lost her 6 year old nearly two years ago, I don't know if she would describe herself as totally 'at peace', but she told me earlier today that she finds it easier to trust God again than she used to . I suppsed that is hope, at least to me.
What a horrible rollercoaster you were on during your pregnancy. I'm so very sorry that your little girl did not survive despite what sounds like a bitter fight. I cannot believe I have a 'dead baby' either. It almost seems like I just made it up or something.
Turtle, How utterly devastating for you and your familly. We don't have any answers as to why Will died either (his u/s scan always appeared perfectedly healthy with a healthy hearbeat and development). I think no knowing what happened will always haunt me. As will the thought that my Will died in me and I didn't even know it at first. That thought hurts my heart so deeply. I have a friend who lost her 6 year old nearly two years ago, I don't know if she would describe herself as totally 'at peace', but she told me earlier today that she finds it easier to trust God again than she used to . I suppsed that is hope, at least to me.
January 31, 2010 |
Eve
Eve
Maddie, I am just so heartbroken for you. Your story is so incredible, you've been so brave.
Turtle, dear heart. I can't answer for everyone, and I don't know if it shows through my posts here, but I have found some peace. It's not constant, necessarily. It's not a matter of cancelling out all sadness or unhappiness or longing, but yes, there is a peace. I don't pretend to understand it, but it allows me to be happy at times and to be free of guilt, and to move on, and the same peace allows me to process some of the questions around Gabriel.
B - I totally understand. I don't blame you for not wanting to name your child if your husband is not on board with the idea. It's hard enough on a marriage to lose a baby like this without creating additional strife.
Eve - Thanks for the offer. I have seen an RE - after I lost Gabriel I decided there was no way in hell I was going back to my mw or her doc because apart from knowing I am now high-risk, I was far too angry to see them again. That's died down some, but it led me to a new women's health group recommended by a friend who used to see my old mw and understood where I was coming from. My new OB is fantastic and lined up all the tests to see if there was a linking factor. Good thing - that's how we discovered the cervical damage. It wouldn't be obvious on another u/s, and probably not until it was too late in another pregnancy. Anyway, there is an RE with the practice and I saw him once; he did the shg and went over my blood work results with me.
He's the one who spotted the damage to the cervix. To be honest, I knew I didn't have any uterine deformities, or fibroids or polyps and was just sort of going along with the shg because she wanted to see if there was any scar tissue. I didn't expect it turn up anything, but the RE was particularly interested to note I'd had a cervical pregnancy and I think it led him to check a little closer. And sure enough, the internal OS is damaged, precisely where the ectopic was.
The MTHFR is heterozygous, but the RE said he believes it was probably contributing to the early miscarriages and possibly the placement of the ectopic (but that could also be that I know now that I have unusually short luteal phases post-pregnancy, so it could have simply been a drop in progesterone making the endometrium hostile to the embryo trying to implant). The fact that I was taking extra folic acid may have helped Gabe to implant, but there is still a strong liklihood that there was early placental malformation, you know?
He said he feels that a supplement (Folgard, which is essentially what I'm doing with the extra B vitamins) and baby aspirin should be sufficient, because my homocysteine levels were normal.
Turtle, dear heart. I can't answer for everyone, and I don't know if it shows through my posts here, but I have found some peace. It's not constant, necessarily. It's not a matter of cancelling out all sadness or unhappiness or longing, but yes, there is a peace. I don't pretend to understand it, but it allows me to be happy at times and to be free of guilt, and to move on, and the same peace allows me to process some of the questions around Gabriel.
B - I totally understand. I don't blame you for not wanting to name your child if your husband is not on board with the idea. It's hard enough on a marriage to lose a baby like this without creating additional strife.
Eve - Thanks for the offer. I have seen an RE - after I lost Gabriel I decided there was no way in hell I was going back to my mw or her doc because apart from knowing I am now high-risk, I was far too angry to see them again. That's died down some, but it led me to a new women's health group recommended by a friend who used to see my old mw and understood where I was coming from. My new OB is fantastic and lined up all the tests to see if there was a linking factor. Good thing - that's how we discovered the cervical damage. It wouldn't be obvious on another u/s, and probably not until it was too late in another pregnancy. Anyway, there is an RE with the practice and I saw him once; he did the shg and went over my blood work results with me.
He's the one who spotted the damage to the cervix. To be honest, I knew I didn't have any uterine deformities, or fibroids or polyps and was just sort of going along with the shg because she wanted to see if there was any scar tissue. I didn't expect it turn up anything, but the RE was particularly interested to note I'd had a cervical pregnancy and I think it led him to check a little closer. And sure enough, the internal OS is damaged, precisely where the ectopic was.
The MTHFR is heterozygous, but the RE said he believes it was probably contributing to the early miscarriages and possibly the placement of the ectopic (but that could also be that I know now that I have unusually short luteal phases post-pregnancy, so it could have simply been a drop in progesterone making the endometrium hostile to the embryo trying to implant). The fact that I was taking extra folic acid may have helped Gabe to implant, but there is still a strong liklihood that there was early placental malformation, you know?
He said he feels that a supplement (Folgard, which is essentially what I'm doing with the extra B vitamins) and baby aspirin should be sufficient, because my homocysteine levels were normal.
January 31, 2010 |
eliza
eliza
Eliza, I'm so glad you worked with an RE. Too many OBs try to do things themselves that are WAAAAY over their heads (my experience anyway). I have been on a course of Folgard and Baby Aspirin for both my pregnancies, as I don't have any recognized clotting disorders, but have a hx of elevated Homocysteine and also am positive for the Thyroid (TSH) antibody, which puts me at risk for clotting issues. That course of treatment led me to my beautiful son. Unfortunately, with the twins, I developed a subchorionic hematoma at 8.5 weeks...and I wonder if that wasn't the underlying cause for Will's death, as it could've been a sign that his placenta was not working properly. I also was on progesterone shots for 12 weeks at the beginning of the pregnancy and now take 17P shots (this helps prevent PTL) starting at weeks 16 up to week 36. I've been very grateful to be working with a perinatologist this whole pregnancy...unfortunately, as you know, even the 'best' cannot always overcome the uncertainty of an unborn child.
I hope that this new course of treatment is the key for you, and that you have to suffer no more losses.
I hope that this new course of treatment is the key for you, and that you have to suffer no more losses.
January 31, 2010 |
Eve
Eve
Thanks Eve. I'm interested to hear you've done the 17P shots; one of my friends had them with her second pregnancy (her first was born at 29 weeks), with great success. She ended up having to be induced for post-dates, after 12 weeks of full bed-rest from 23 to 35 weeks.
It's something Dr. B has mentioned. She is an OB, but does a lot of high-risk work and works with sever peri's. As I understand it, she'll co-manage so long as things seem normal, and hand me over if things are taking a turn for the worse.
I can't imagine how difficult things are for you right now as you mourn WIll and pray for Abby, so I'm glad that you at least have a good medical team in place.
It's something Dr. B has mentioned. She is an OB, but does a lot of high-risk work and works with sever peri's. As I understand it, she'll co-manage so long as things seem normal, and hand me over if things are taking a turn for the worse.
I can't imagine how difficult things are for you right now as you mourn WIll and pray for Abby, so I'm glad that you at least have a good medical team in place.
January 31, 2010 |
eliza
eliza
Eliza,
The 17P shots do seem to be helping a lot. At 24 weeks pg with my ds, I was hospitalIzed for a weeks to due to contrax every 2 min that started to dilate my cervix. Luckily with mag and other drugs, they were able to stop my labor. I was on bedrest at home with him from 24 weeks to 36 weeks. I also wore a terbutaline pump in my leg to manage the contrax. The day I went off bedrest and the terb at 36 weeks, I had my son.
This time, I decided to consult with a perinatologist once I found out I was pregnant (didn't know it was twins yet). He gave me great advice, including HIGHLY recommending the 17P shots. We made a plan that I would work with both him and my reg OB during my pregnancy. However, once I found out I was having twins, I only went to my peri as I was considered extremely high risk (along with the PTL I had with my ds, I had severe hyperemesis, and only gained 10lbs during my pregnancy).
I was so grateful to have a peri on board when at 8.5 weeks I suffered a big bleed from my subchorionic hematoma. He also had me on an aggressive regiment of meds to manage my hyperemesis (and I'm now up 11 lbs prepregancy at 27 weeks this time). I started having contrax at 14 weeks with this pregnancy (probably b/c of twins). I noticed a HUGE difference with the contrax once I started the 17P shots. I also take Procardia twice a day since I've been in L&D several times contracting too much.
It's something to consider at least consulting with a peri, so that, if something scary happens early on, you have that resource at your disposal. That being said, I miss working with my OB dearly. He is someone who would've been extremely caring and kind during all this mess of a pregnancy I'm in.
The 17P shots do seem to be helping a lot. At 24 weeks pg with my ds, I was hospitalIzed for a weeks to due to contrax every 2 min that started to dilate my cervix. Luckily with mag and other drugs, they were able to stop my labor. I was on bedrest at home with him from 24 weeks to 36 weeks. I also wore a terbutaline pump in my leg to manage the contrax. The day I went off bedrest and the terb at 36 weeks, I had my son.
This time, I decided to consult with a perinatologist once I found out I was pregnant (didn't know it was twins yet). He gave me great advice, including HIGHLY recommending the 17P shots. We made a plan that I would work with both him and my reg OB during my pregnancy. However, once I found out I was having twins, I only went to my peri as I was considered extremely high risk (along with the PTL I had with my ds, I had severe hyperemesis, and only gained 10lbs during my pregnancy).
I was so grateful to have a peri on board when at 8.5 weeks I suffered a big bleed from my subchorionic hematoma. He also had me on an aggressive regiment of meds to manage my hyperemesis (and I'm now up 11 lbs prepregancy at 27 weeks this time). I started having contrax at 14 weeks with this pregnancy (probably b/c of twins). I noticed a HUGE difference with the contrax once I started the 17P shots. I also take Procardia twice a day since I've been in L&D several times contracting too much.
It's something to consider at least consulting with a peri, so that, if something scary happens early on, you have that resource at your disposal. That being said, I miss working with my OB dearly. He is someone who would've been extremely caring and kind during all this mess of a pregnancy I'm in.
February 1, 2010 |
Eve
Eve
Thank you for asking about our babies, Eve. To many of us here it feels like we are the only ones who remember or care that we once caried a life. My story is on my blog. I am praying for your family and the safe delivery of
My son's name is Aiden Wren, thank you for asking.
My son's name is Aiden Wren, thank you for asking.
February 1, 2010 |
jen
jen
crap, I'm sorry Eve. I was trying to add Abby's name in and my connection got screwed up. I'll remember your Will with you too, if you want.
February 1, 2010 |
jen
jen
Eve,
My daughter's name was Jenna.
I love that you asked.
I think about you and Abby and WIll a lot.
I just wanted to add that I hide from church too, sometimes, and I was hoping to convince you not to feel bad about it. It's good to protect yourself as much as possible from fake converstations or superficial talk. Church is a land mine for that.
I am sorry it is so hard for you and I care.
I hope for you,
Diana
My daughter's name was Jenna.
I love that you asked.
I think about you and Abby and WIll a lot.
I just wanted to add that I hide from church too, sometimes, and I was hoping to convince you not to feel bad about it. It's good to protect yourself as much as possible from fake converstations or superficial talk. Church is a land mine for that.
I am sorry it is so hard for you and I care.
I hope for you,
Diana
February 1, 2010 |
diana
diana
My son's name is Henry, he would be 6 months old in just three days. Here is his story (see first post for a description of what happened at his birth, which resulted in his death three days later):
http://indiebambino.blogspot.com/
Hugs to you....
http://indiebambino.blogspot.com/
Hugs to you....
February 1, 2010 |
mindy
mindy
I have a new blog. If you are interested, email me and I will give you the password.
Thanks!
Thanks!
February 23, 2010 |
Martha
Martha
Here is a link to my blog discussing my loss: http://infertilityrocks.wordpress.com/2010/01/14/losing-will/
God Bless you all...Eve