Some time ago I received a phone call from a friend. She was late in the third trimester of her second pregnancy. She had been experiencing swelling and high blood pressure, and at her last appointment was told that she was spilling protein. Her doctor casually mentioned “preeclampsia.” So she called me.
I asked my friend for her lab numbers. And honestly, I was worried. Something was definitely going on. I know my story is the very rare worst case scenario, so I always consciously try to walk the fine line between trying to educate people about this little-known condition and, well, stepping out of place.
But my friend called for advice, so I tried to give it in a calm, non-alarmist manner.
I casually suggested that my friend buy a blood pressure cuff and that she push her doctor to do a 24 hour urine test. But it was the strangest thing. . . after calling me for advice – she kind of brushed me off! Denial, no doubt. But the most troubling part was that it seemed as if her doctor was being rather lackadaisical about the situation, too. But whatever. “Well, trust your doctor, I suppose. I’m sure he knows what’s best. . .”
After that, I called my friend several times to check up on her.
“So, how was your blood pressure today?,” I asked.
“Oh, a little high, but they did another ultrasound and the baby looks great!”
“Yes, but what about protein? Are you still spilling protein?”
“Yeah, I think that’s gone up a little, too. But the baby still has plenty of amniotic fluid, so that’s good!”
“Yes, but. . .
“And he’s still measuring right on track!”
“Yes, but. . .”
She kept insisting. . .
And I just wanted to scream: IT DOESN’T MATTER!!!
Let me tell you about our babies. They were beautiful. And perfect. Measured right on track. Perfect levels of amniotic fluid. Ten fingers and ten toes.
But it wasn’t enough.
People always worry and talk about the baby’s health. But what about the mother?
See, that’s the thing about preeclampsia/ HELLP Syndrome. (And, I suspect, the thing about preterm labor and placental abruptions and incompetent cervixes, and a whole host of other conditions about which I do not know enough to address.) It’s not a condition of the baby. Preeclampsia certainly affects the baby; it can cause IUGR or low amniotic fluid or, obviously, prematurity and death. But it’s not a condition of the baby.
It’s a condition of the mother.
Here in the south we have a saying: If mama ain’t happy, ain’t nobody happy. (I suspect that there is a comparable northern saying that simply involves better grammar.) But what about – if mama ain’t healthy, ain’t nobody healthy?
And I’m not talking “not healthy” as in the mother drinks a gallon of Jack and smokes a carton of cigarettes a day. In the case of preeclampsia, I’m talking “not healthy” as in the mother’s body rejects – violently and unequivocally rejects - the foreign matter inside it. The foreign matter that, for years, was dreamt about, and hoped for, and prayed for, and cried for (and, quite frankly, paid for).
Women like my friend like to talk about A Mother’s Love; about how they've never known a love so great and how they’d do anything for their children. Well, I’m here to tell you this – I would have done anything for those babies. I would have given my life.
Take me, not them I wanted to beg the doctors - even as they were explaining to me that that simply wasn't possible. Even if I had given my life – even if I had died right then– they still would have died, too. Not because anything was wrong with them. They were just too small to make it. They died all because I wasn’t healthy.
So, did I say all this to my friend? No, of course not. I just kept trying to steer her with the “Yes, but’s. . .,” while silently begging her to keep an eye on her own health for the sake of them both. And I kept listening to her carry on – insisting – about how perfect her baby was.
And then I got off the phone, and whispered to myself. . . Mine were, too.
MINE WERE, TOO.
(Of course, all babies are perfect and the above is not to say or suggest anything about those who have died because of his or her own health condition. I'm just sharing the other side of the story which is apparently little known to those outside our community).
Friday, October 2, 2009
Thursday, August 13, 2009
A Start
Well, ladies, we saw a heartbeat. I am really, genuinely surprised. And I must have unconsciously convinced myself that there wouldn't be one, because I've already noticed a slight shift in my attitude. It really helps to know that all this crap,* for now at least!, is for a reason.
My MFM was wonderful. He shook B's hand and gave me a hug, and told us how very happy he was to see us back. This sounds awful, but I was a little worried that we'd become just a number by treating with an MFM only. You know, at my OB's office we were "special" - the MFM sees high risk stuff all. day. long. But everyone (with the exception of the scheduling lady) was very kind and personal.
For now, we're going to just stay the course with my meds. That surprised me a little since I expected that we'd be increasing my Lovenox dosage, but he said we're going to put that off until if/ when I reach 13 weeks. I question this, but the science on thrombophilias and preeclampsia is so sketchy anyway, I know there's no firm right answer here.
I'm going to be seeing him every 2 weeks - well, except my next appointment. Apparently there's not an opening in 2 weeks so I have to wait 3. Do I even have to tell you how totally not happy that conversation with the scheduling girl made me! Grrrrrr.
Beyond that there's not much to report! You know, this is the same doctor with whom I got so irritated because he wouldn't give me any numbers. He wouldn't give me a goal gestational age, he wouldn't give me percentages or probabilities. . . And this time - I didn't even ask. My tongue is bleeding from biting it so hard! This goes against everything in my nature, this huge vast uncertainty. To have a due date, but know I'll never reach it, but yet to still not be able to say, "I'll probably be x many weeks early." To not have a freaking clue what to tell my bosses if/ when the time comes for that.
And it is so, so hard knowing that, really, there's not a damn thing they can do for me. These every-two-week appointments aren't to fix anything or cure anything or cause anything. I mean, therein lies the devil of preeclampsia. There is nothing anyone can do. But watch. We watch and wait, and hope that the Lovenox, and the facts of a second pregnancy and a single pregnancy, will buy us some time.
I'm still sick. I still can't stop crying. I still miss our babies in such a sharp way. But I am really, really trying to embrace his mentality right now. 2 weeks at a time. 2 weeks at a time.
::Deep breaths::
Thank you all for your continued support, kind words, and encouragement. It means so much to be walking this road with you.
*Refering to the morning sickness and etc., not anything to do with our twins, of course.
My MFM was wonderful. He shook B's hand and gave me a hug, and told us how very happy he was to see us back. This sounds awful, but I was a little worried that we'd become just a number by treating with an MFM only. You know, at my OB's office we were "special" - the MFM sees high risk stuff all. day. long. But everyone (with the exception of the scheduling lady) was very kind and personal.
For now, we're going to just stay the course with my meds. That surprised me a little since I expected that we'd be increasing my Lovenox dosage, but he said we're going to put that off until if/ when I reach 13 weeks. I question this, but the science on thrombophilias and preeclampsia is so sketchy anyway, I know there's no firm right answer here.
I'm going to be seeing him every 2 weeks - well, except my next appointment. Apparently there's not an opening in 2 weeks so I have to wait 3. Do I even have to tell you how totally not happy that conversation with the scheduling girl made me! Grrrrrr.
Beyond that there's not much to report! You know, this is the same doctor with whom I got so irritated because he wouldn't give me any numbers. He wouldn't give me a goal gestational age, he wouldn't give me percentages or probabilities. . . And this time - I didn't even ask. My tongue is bleeding from biting it so hard! This goes against everything in my nature, this huge vast uncertainty. To have a due date, but know I'll never reach it, but yet to still not be able to say, "I'll probably be x many weeks early." To not have a freaking clue what to tell my bosses if/ when the time comes for that.
And it is so, so hard knowing that, really, there's not a damn thing they can do for me. These every-two-week appointments aren't to fix anything or cure anything or cause anything. I mean, therein lies the devil of preeclampsia. There is nothing anyone can do. But watch. We watch and wait, and hope that the Lovenox, and the facts of a second pregnancy and a single pregnancy, will buy us some time.
I'm still sick. I still can't stop crying. I still miss our babies in such a sharp way. But I am really, really trying to embrace his mentality right now. 2 weeks at a time. 2 weeks at a time.
::Deep breaths::
Thank you all for your continued support, kind words, and encouragement. It means so much to be walking this road with you.
*Refering to the morning sickness and etc., not anything to do with our twins, of course.
Thursday, July 23, 2009
Beating the Odds
We have beaten the odds across the board. Not in the sense that we’ve had positive outcomes, of course. (Although, for a time, we certainly thought we had “beaten the odds” in the most joyful of ways – oh how ecstatic and confident we were – of course IUI with injectibles worked, and of course we were expecting twins!) But, rather, in the sense that none of our outcomes, statistically, should have occurred. Consider the following:
30% chance that IUI with injectibles is successful after 3-4 cycles
25% of those pregnancies are twin pregnancies.
5-7% of all pregnancies develop preeclampsia
2-12% of those pregnancies develop HELLP Syndrome
0.2% of babies are diagnosed with HLHS
Anyone enough of a numbers-wiz to figure out the statistical likelihood of all this happening in the same pregnancy??
I have unabashedly said to B that, once we start treatment again, I hope I’m able to get pregnant “easily.” I say "unabashedly" because I know that many of you have been on this journey longer and have to endure more intensive treatments, so sometimes I feel bad for having such thoughts. . . but, for us - it’s been almost three years, thousands of dollars, two dead babies, indescribable heartache - and, "next time," getting pregnant would just be the beginning! And that's quite enough for me, thankyouverymuch :)
But then I almost had to laugh – why in the world would I be so bold as to think that we could beat the odds again as far as getting pregnant goes – but then fall into the majority on the remainder of the statistics?
No, I told B, it almost seems as if we should resign ourselves to even more months and years of IF, possibly move on to IVF (and maybe even multiple miscarriages this time, just for an added punch) if we are to avoid the same ultimate outcomes as last time. Maybe it’s all or nothing – beat the odds across the board, or be universally “normal”? (Isn’t it interesting how terms like “easily” and “normal” become so relative in the IF world?) Although I fear not being able to get pregnant again – I am now much more fearful of getting pregnant and not being able to keep a baby alive.
Anyway, we just found out that B and I beat another odd, too:
1% chance of getting pregnant without treatment
Yep, that means what you think it does. Go frickin' figure.
I know this stings for some of you to read, and for that I am so, so sorry. And I know I might kick myself for even posting this at all – I’m telling you right away (no, really, like right away). . . but that is because I am so freaked out and have such mixed emotions about this, for so many reasons (not the least of which being that this is exactly when I got pregnant with the twins last year) - and I need an outlet.
In 24 hours it’s already become a whirlwind of doctors and insurance companies like I never imagined. The frenzy reminds me that I have reason to be terrified. I have a million blog posts swirling around in my head, and feel as if I just need to take the day off work and get them typed out, and out of my head!
Maybe I’ll also publish all the posts I drafted over the past few weeks about IF and our upcoming treatment cycle. (We were planning to do our first post-babies IUI next cycle.) I wrote these posts, but didn’t publish them at the time- ? And I might still toss them up here, even though circumstances have momentarily changed, just to let you know where my mind or was.
I can't even wrap my head around this most recent development. It’s so surreal.
I understand if some of you would rather not read what’s coming. But I do ask this – please, please cross your fingers for us. Think of us, pray for us – whatever it is that you do. This is just the beginning. Of whatever comes next.
30% chance that IUI with injectibles is successful after 3-4 cycles
25% of those pregnancies are twin pregnancies.
5-7% of all pregnancies develop preeclampsia
2-12% of those pregnancies develop HELLP Syndrome
0.2% of babies are diagnosed with HLHS
Anyone enough of a numbers-wiz to figure out the statistical likelihood of all this happening in the same pregnancy??
I have unabashedly said to B that, once we start treatment again, I hope I’m able to get pregnant “easily.” I say "unabashedly" because I know that many of you have been on this journey longer and have to endure more intensive treatments, so sometimes I feel bad for having such thoughts. . . but, for us - it’s been almost three years, thousands of dollars, two dead babies, indescribable heartache - and, "next time," getting pregnant would just be the beginning! And that's quite enough for me, thankyouverymuch :)
But then I almost had to laugh – why in the world would I be so bold as to think that we could beat the odds again as far as getting pregnant goes – but then fall into the majority on the remainder of the statistics?
No, I told B, it almost seems as if we should resign ourselves to even more months and years of IF, possibly move on to IVF (and maybe even multiple miscarriages this time, just for an added punch) if we are to avoid the same ultimate outcomes as last time. Maybe it’s all or nothing – beat the odds across the board, or be universally “normal”? (Isn’t it interesting how terms like “easily” and “normal” become so relative in the IF world?) Although I fear not being able to get pregnant again – I am now much more fearful of getting pregnant and not being able to keep a baby alive.
Anyway, we just found out that B and I beat another odd, too:
1% chance of getting pregnant without treatment
Yep, that means what you think it does. Go frickin' figure.
I know this stings for some of you to read, and for that I am so, so sorry. And I know I might kick myself for even posting this at all – I’m telling you right away (no, really, like right away). . . but that is because I am so freaked out and have such mixed emotions about this, for so many reasons (not the least of which being that this is exactly when I got pregnant with the twins last year) - and I need an outlet.
In 24 hours it’s already become a whirlwind of doctors and insurance companies like I never imagined. The frenzy reminds me that I have reason to be terrified. I have a million blog posts swirling around in my head, and feel as if I just need to take the day off work and get them typed out, and out of my head!
Maybe I’ll also publish all the posts I drafted over the past few weeks about IF and our upcoming treatment cycle. (We were planning to do our first post-babies IUI next cycle.) I wrote these posts, but didn’t publish them at the time- ? And I might still toss them up here, even though circumstances have momentarily changed, just to let you know where my mind or was.
I can't even wrap my head around this most recent development. It’s so surreal.
I understand if some of you would rather not read what’s coming. But I do ask this – please, please cross your fingers for us. Think of us, pray for us – whatever it is that you do. This is just the beginning. Of whatever comes next.
Tuesday, May 26, 2009
Hypoplastic Left Heart Syndrome
This is baby B's “heart defect” to which I have referred but had not yet identified.
As you might recall, when we went for our anatomy scan at 19w2d, we were told that there might be a problem with our little girl, baby B’s, heart. The ultrasound tech said she couldn’t get a good picture of the left side. One of the MFMs, Dr. G, came in and agreed that the left side could not be seen well – but, baby B was always smaller, always measuring a little behind baby A. So maybe it was just too early to get a really good look of her heart. Dr. G. told us to come back in a week and retest. Hopefully everything would be fine. If not - to a pediatric cardiologist we go.
That night my OB called and told me to go to the hospital. I had no idea everything was falling apart. All I could think of, all I could focus on or bargain for – was that my little girl B’s heart be okay.
When I was in the hospital, after I delivered our babies, my "head" MFM, Dr. C, requested an autopsy to look at baby B's heart. So, was it related?, I asked. Did my HELLP Syndrome have anything to do with her heart defect? No, he said. Nothing at all.
You mean there were *more* cards stacked against me and my babies?! I cried. It's not enough that my body apparently *hates* to be pregnant??
Yes, it seems so, he said. Double whammy.
(Incidentally, I received this same response when I asked my RE if my clotting disorders that led to my HELLP caused my infertility. She said no. Double whammy?, I asked. Yes, she responded. You’re just my unluckiest patient. So make it a tipple whammy: IF, clotting disorders/HELLP Syndrome, and heart defects. But I digress.)
The autopsy results were inconclusive. I was crushed. I needed answers. So I asked for the report from the anatomy scan. And there I saw it: “Probable HLHS.” Hypoplastic Left Heart Syndrome.
Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. In a child with HLHS, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body), including the aorta, are severely underdeveloped. Infants with HLHS develop life-threatening shock when the ducutus arteriosus begins to close, typically within the first hours or days of life.
The preferred treatment is a heart transplant within the first 24 hours of birth. Since often there are not organs available to transplant, the most common treatment is a series of three reconstructive operations, the first performed within the first week, the second during the first six months, and the third within the first two to three years.
When we went for our follow-up with Dr. C, I asked him – So really, doctor. What do you think was going on with her heart? He started speaking slowly: Well, Dr. G is one of the best in the business. She knows how to read ultrasounds, and she knows how to find what she’s looking for. . .
Rate of recurrence: 5%. Maybe as high as 25%. One study claims a 13% recurrance risk and a 22% chance of some other cardiovascular malformation.
Nuts.
I tell you this, dear friends, so that, should I find myself pregnant again one day down the road, and I come to you with my anxiety and fear, you will know all its many sources. Fear that my body is failing my child. Fear that my child's body is failing him or her. A tripple whammy. So many insults added to injury. It's all a little hard to get my head around.
I feel valid in my anxiety; it's not unfounded. The science - the numbers - are very, very real. And only my baseless belief that we should now be immune from all bad things keeps me hopeful that we will, for the first time, fall on the right side of the odds.
As you might recall, when we went for our anatomy scan at 19w2d, we were told that there might be a problem with our little girl, baby B’s, heart. The ultrasound tech said she couldn’t get a good picture of the left side. One of the MFMs, Dr. G, came in and agreed that the left side could not be seen well – but, baby B was always smaller, always measuring a little behind baby A. So maybe it was just too early to get a really good look of her heart. Dr. G. told us to come back in a week and retest. Hopefully everything would be fine. If not - to a pediatric cardiologist we go.
That night my OB called and told me to go to the hospital. I had no idea everything was falling apart. All I could think of, all I could focus on or bargain for – was that my little girl B’s heart be okay.
When I was in the hospital, after I delivered our babies, my "head" MFM, Dr. C, requested an autopsy to look at baby B's heart. So, was it related?, I asked. Did my HELLP Syndrome have anything to do with her heart defect? No, he said. Nothing at all.
You mean there were *more* cards stacked against me and my babies?! I cried. It's not enough that my body apparently *hates* to be pregnant??
Yes, it seems so, he said. Double whammy.
(Incidentally, I received this same response when I asked my RE if my clotting disorders that led to my HELLP caused my infertility. She said no. Double whammy?, I asked. Yes, she responded. You’re just my unluckiest patient. So make it a tipple whammy: IF, clotting disorders/HELLP Syndrome, and heart defects. But I digress.)
The autopsy results were inconclusive. I was crushed. I needed answers. So I asked for the report from the anatomy scan. And there I saw it: “Probable HLHS.” Hypoplastic Left Heart Syndrome.
I spent the rest of the afternoon glued to my computer:
Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. In a child with HLHS, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body), including the aorta, are severely underdeveloped. Infants with HLHS develop life-threatening shock when the ducutus arteriosus begins to close, typically within the first hours or days of life.
The preferred treatment is a heart transplant within the first 24 hours of birth. Since often there are not organs available to transplant, the most common treatment is a series of three reconstructive operations, the first performed within the first week, the second during the first six months, and the third within the first two to three years.
When we went for our follow-up with Dr. C, I asked him – So really, doctor. What do you think was going on with her heart? He started speaking slowly: Well, Dr. G is one of the best in the business. She knows how to read ultrasounds, and she knows how to find what she’s looking for. . .
Translation: what she was looking for – the left side of my baby’s heart – essentially wasn’t there. Hypoplastic Left Heart Syndrome.
Rate of recurrence: 5%. Maybe as high as 25%. One study claims a 13% recurrance risk and a 22% chance of some other cardiovascular malformation.
Nuts.
I tell you this, dear friends, so that, should I find myself pregnant again one day down the road, and I come to you with my anxiety and fear, you will know all its many sources. Fear that my body is failing my child. Fear that my child's body is failing him or her. A tripple whammy. So many insults added to injury. It's all a little hard to get my head around.
I feel valid in my anxiety; it's not unfounded. The science - the numbers - are very, very real. And only my baseless belief that we should now be immune from all bad things keeps me hopeful that we will, for the first time, fall on the right side of the odds.
Monday, May 4, 2009
A Mother
Here in the babyloss community we call ourselves “mothers.” And I suppose it’s true. I have been forever changed. I have carried two perfect examples of life inside of me. I loved them with every ounce of my being and in ways I never before understood or thought possible. I gave birth to two perfect little babies, and will forever carry the weight of their absence. My inability to protect them shattered me to the core.
And I can remind myself of these things all day long. But I don’t feel like a mother.
There’s no nursery in my house. There aren’t any bottles or sippy cups in my cupboards. We don’t have car seats in our cars. We sleep in and stay up late. And we save money for fertility treatments rather than college. I sing songs to my dogs, rather than a child (embarrassing but true), and I rock – well, I don’t rock at all. I don't bandage knees or break up fights. I don't cut the crust off bread or cut grapes into quarters. I'm not sending new photographs to doting grandparents. My arms are empty. Painfully, obviously, empty.
And the world certainly doesn’t view me as a mother. Not ever, but particularly not on this coming Sunday. No one will be sending me a card, taking me to lunch, or handing me a gift. There would be no corsage for me at church.
Sometimes I want to scream at the world and convince it of my mother-ness. But most of the time I just feel like a fraud. I want to embrace Mothers' Day in a bittersweet way: bitter because my little boy and girl - my son and my daughter - are not here with me; sweet because I am still their mother.
But if I am a mother it is only in an intangible, emotional sense. (And, I suppose, in a physical sense too, if you consider my reshaped body.) The practical side of me doesn't even remotely feel like a mother. Which, I suppose, is the real source of the heartache after all.
And I can remind myself of these things all day long. But I don’t feel like a mother.
There’s no nursery in my house. There aren’t any bottles or sippy cups in my cupboards. We don’t have car seats in our cars. We sleep in and stay up late. And we save money for fertility treatments rather than college. I sing songs to my dogs, rather than a child (embarrassing but true), and I rock – well, I don’t rock at all. I don't bandage knees or break up fights. I don't cut the crust off bread or cut grapes into quarters. I'm not sending new photographs to doting grandparents. My arms are empty. Painfully, obviously, empty.
And the world certainly doesn’t view me as a mother. Not ever, but particularly not on this coming Sunday. No one will be sending me a card, taking me to lunch, or handing me a gift. There would be no corsage for me at church.
Sometimes I want to scream at the world and convince it of my mother-ness. But most of the time I just feel like a fraud. I want to embrace Mothers' Day in a bittersweet way: bitter because my little boy and girl - my son and my daughter - are not here with me; sweet because I am still their mother.
But if I am a mother it is only in an intangible, emotional sense. (And, I suppose, in a physical sense too, if you consider my reshaped body.) The practical side of me doesn't even remotely feel like a mother. Which, I suppose, is the real source of the heartache after all.
Tuesday, April 7, 2009
Trying To Make Some Good
One of the things we did over our Due Date weekend was make plans to attend a Preeclampsia Foundation Awareness Walk. It’s Mothers’ Day weekend, and we have to travel 5 hours away for the closest Walk. . . And I’m terrified! I don’t have to tell you all how terribly difficult it’s going to be to attend this family-friendly event without our sweet babies, but we just really feel compelled to honor their memory in this way.
I know that everyone has their own causes, and I know that we’re all stretched thin during these times. And I know that it’s super uncomfortable for me to ask people for things – anything! – especially people like you who have been so wonderful and supportive of us :)
But I also know how many of you have also been touched by preeclampsia/ HELLP Syndrome, and I know how many of you care about me and B. So I wanted to at least let you know what we’re doing and give you the opportunity – and ask you kindly – to support us and the Foundation by donating to our Walk.
Most of you already know my story, so I won’t bore you with it now. (If you don’t, you can click here to read about the day the wheels fell off.) The short version is that I developed HELLP Syndrome, which is an extremely severe variant of preeclampsia. Preeclampsia causes a woman’s blood vessels to constrict, resulting in high blood pressure and a reduced blood flow that can affect organs throughout the body including the liver, kidneys, and brain.
HELLP Syndrome is very rare; however, preeclampsia is all too common. It is the leading known cause of premature births in the U.S., and it affects as many women in the U.S. as does breast cancer. Preeclampsia complicates 5-8% of all pregnancies: nearly 350,000 women each year in the U.S. alone. Over 1,500 women each week reach severe or critical status as I did and, even in the U.S., at least 2 mothers die each week because of this condition. Worldwide estimates suggest that preeclampsia causes 76,000 maternal and 500,000 infant deaths each year.
But the worst part is this: Preeclampsia has no known cause, and has no known cure other than delivery of the baby.
The Preeclampsia Foundation is dedicated to raising public awareness and funding innovative research for preeclampsia. Please consider supporting us and our Walk by donating to the Foundation! You can send us send a check made payable to the Preeclampsia Foundation, and we be honored to present it to the Foundation at the Walk. (Please email me for a mailing address.) Or, if you prefer to make a credit card donation simply go to https://www.preeclampsia.org/pfwat/watdonation.asp, and make sure to indicate that the donation is made in memory of "Baby A and Baby B." I'm asking for this notation for record keeping purposes only - I know your own babies will be on your heart! All donations are tax deductible.
Please don't be upset with me for writing this post! Like I said, this is definitely not comfortable for me, but we're trying to reach out to all our family and friends - and you're my friends :) (Lucky you!)
Thank you so much for your continued love and support! And thank you for helping me fight preeclampsia and HELLP Syndrome.
I know that everyone has their own causes, and I know that we’re all stretched thin during these times. And I know that it’s super uncomfortable for me to ask people for things – anything! – especially people like you who have been so wonderful and supportive of us :)
But I also know how many of you have also been touched by preeclampsia/ HELLP Syndrome, and I know how many of you care about me and B. So I wanted to at least let you know what we’re doing and give you the opportunity – and ask you kindly – to support us and the Foundation by donating to our Walk.
Most of you already know my story, so I won’t bore you with it now. (If you don’t, you can click here to read about the day the wheels fell off.) The short version is that I developed HELLP Syndrome, which is an extremely severe variant of preeclampsia. Preeclampsia causes a woman’s blood vessels to constrict, resulting in high blood pressure and a reduced blood flow that can affect organs throughout the body including the liver, kidneys, and brain.
HELLP Syndrome is very rare; however, preeclampsia is all too common. It is the leading known cause of premature births in the U.S., and it affects as many women in the U.S. as does breast cancer. Preeclampsia complicates 5-8% of all pregnancies: nearly 350,000 women each year in the U.S. alone. Over 1,500 women each week reach severe or critical status as I did and, even in the U.S., at least 2 mothers die each week because of this condition. Worldwide estimates suggest that preeclampsia causes 76,000 maternal and 500,000 infant deaths each year.
But the worst part is this: Preeclampsia has no known cause, and has no known cure other than delivery of the baby.
The Preeclampsia Foundation is dedicated to raising public awareness and funding innovative research for preeclampsia. Please consider supporting us and our Walk by donating to the Foundation! You can send us send a check made payable to the Preeclampsia Foundation, and we be honored to present it to the Foundation at the Walk. (Please email me for a mailing address.) Or, if you prefer to make a credit card donation simply go to https://www.preeclampsia.org/pfwat/watdonation.asp, and make sure to indicate that the donation is made in memory of "Baby A and Baby B." I'm asking for this notation for record keeping purposes only - I know your own babies will be on your heart! All donations are tax deductible.
Please don't be upset with me for writing this post! Like I said, this is definitely not comfortable for me, but we're trying to reach out to all our family and friends - and you're my friends :) (Lucky you!)
Thank you so much for your continued love and support! And thank you for helping me fight preeclampsia and HELLP Syndrome.
Monday, March 2, 2009
Back In The Saddle. Kind Of.
Well, sweet girls. . . I’m too tired to write much interesting tonight (my, but isn’t that presumptious about all the other nights!) I'm sure that this will be a long and boring post, but I thought I should update while it's on my mind.
Today B and I met with the RE for the first time since losing the babies. I was so excited for this day to come; to get a plan in place. But as we sat and waited. And waited and waited and waited. I felt it all slowly draining out of me . . .
Our RE was great. She’s sympathetic without being emotional, which suits me perfect. She took it upon herself to validate the opinions of my MFM and hematologist - that the clotting disorders (albeing vanishing) were the cause, and Lovenox will be the magic pill. It meant a lot that she said that.
Then she started talking about "what worked for us last time," (IUI with injectibles). It was strange, because I had to bring up the fact that my MFM cautioned against multiples again. My RE agreed that a single would be best, but she didn’t seem to feel really strongly against multiples. If we did injectibles again, of course we would do everything to try to ensure a single (and of course she mentioned selective reduction), but . . .
Oh yeah, and then she looked at my follie sizes before trigger from my last IUI, and said she wouldn't have been surprised if we'd ended up with triplets last time! (And I had only been on 75ius of Follistim!) Um - wtf?!! I couldn't do anything but look at B and laugh while I said: "Well, if that had been the case, I would have been dead a long time ago!"
Anyway! She mentioned Clomid – to which we promptly responded, “No way in hell!” (HORRIBLE experience before!) She mentioned IVF and discussed the stats for single transfers vs. double transfers, and she mentioned a gestational surrogate - But she said she didn’t think we were at a point where either of those was necessary yet.
You know, THIS was the good news from the appointment. I was so terrified that she’d say we could do a single transfer IVF or nothing at all, and we just don’t have the funds to make that happen. So, the good news – the really good news – is that we have options.
B also brought up an unmedicated IUI (trigger, but no FSH), and she supported that idea also. Oh, and I asked whether any of my diagnoses, including homo MTHFR, had anything to do with our infertility. Nope, nothing at all. Just a dang-blasted double-whammy. I believe she called me something like her “most unlucky patient.” Yay me :)
So, I guess its just up to us. It was a good appointment because she supports me getting pregnant again and will help us get there (without resorting to the most expensive methods). But, naturally, it was also completely overwhelming and frustrating and exhausting.
I expected to be fired up today. I expected to be crying or yelling. I expected my post tonight to be railing against this most horrible of injustices – this ultimate insult added to injury! – that is infertility combined with pregnancy loss. (And ladies, I know I don’t have to stop and explain that I'm just having a pity party here and I'm not meaning any disrespect to those who are suffering through one or the other.)
But, surprisingly, tonight I’m not crying or yelling. I’m not really anything at all. I just feel spent. Numb, almost. I’ve said it before and I’ll say it again: B and I will have children – I just don’t know how or when that’s going to happen. And I want it to happen, so much. But I really, really don’t want to go through what it takes to get there. It just makes me tired to think about. I just want to fall asleep, and wake up once everyone’s safely in place.
Today B and I met with the RE for the first time since losing the babies. I was so excited for this day to come; to get a plan in place. But as we sat and waited. And waited and waited and waited. I felt it all slowly draining out of me . . .
Our RE was great. She’s sympathetic without being emotional, which suits me perfect. She took it upon herself to validate the opinions of my MFM and hematologist - that the clotting disorders (albeing vanishing) were the cause, and Lovenox will be the magic pill. It meant a lot that she said that.
Then she started talking about "what worked for us last time," (IUI with injectibles). It was strange, because I had to bring up the fact that my MFM cautioned against multiples again. My RE agreed that a single would be best, but she didn’t seem to feel really strongly against multiples. If we did injectibles again, of course we would do everything to try to ensure a single (and of course she mentioned selective reduction), but . . .
Oh yeah, and then she looked at my follie sizes before trigger from my last IUI, and said she wouldn't have been surprised if we'd ended up with triplets last time! (And I had only been on 75ius of Follistim!) Um - wtf?!! I couldn't do anything but look at B and laugh while I said: "Well, if that had been the case, I would have been dead a long time ago!"
Anyway! She mentioned Clomid – to which we promptly responded, “No way in hell!” (HORRIBLE experience before!) She mentioned IVF and discussed the stats for single transfers vs. double transfers, and she mentioned a gestational surrogate - But she said she didn’t think we were at a point where either of those was necessary yet.
You know, THIS was the good news from the appointment. I was so terrified that she’d say we could do a single transfer IVF or nothing at all, and we just don’t have the funds to make that happen. So, the good news – the really good news – is that we have options.
B also brought up an unmedicated IUI (trigger, but no FSH), and she supported that idea also. Oh, and I asked whether any of my diagnoses, including homo MTHFR, had anything to do with our infertility. Nope, nothing at all. Just a dang-blasted double-whammy. I believe she called me something like her “most unlucky patient.” Yay me :)
So, I guess its just up to us. It was a good appointment because she supports me getting pregnant again and will help us get there (without resorting to the most expensive methods). But, naturally, it was also completely overwhelming and frustrating and exhausting.
I expected to be fired up today. I expected to be crying or yelling. I expected my post tonight to be railing against this most horrible of injustices – this ultimate insult added to injury! – that is infertility combined with pregnancy loss. (And ladies, I know I don’t have to stop and explain that I'm just having a pity party here and I'm not meaning any disrespect to those who are suffering through one or the other.)
But, surprisingly, tonight I’m not crying or yelling. I’m not really anything at all. I just feel spent. Numb, almost. I’ve said it before and I’ll say it again: B and I will have children – I just don’t know how or when that’s going to happen. And I want it to happen, so much. But I really, really don’t want to go through what it takes to get there. It just makes me tired to think about. I just want to fall asleep, and wake up once everyone’s safely in place.
Friday, February 13, 2009
Test Results - Part 2
First, thank you all for your sweet words yesterday. It was such a joy for me to share our sweet babies with you.
On the test results front, it seems that no news is – well – no news. I feel so deflated right now, that’s the only way to describe it. Dr. C. was kind as he always is, but I just had so built up this appointment in my head, and it was horribly anticlimactic, to say the least.
I just don’t understand why doctors are so hesitant to give educated guesses. I mean, we don’t go to them for guarantees! I feel like I’m being underestimated – like they don’t trust me to realize that their opinions are just that. But I go to them because they’ve seen this stuff before and I'd like some thoughts on what normally happens. But anyway.
He wouldn’t give us any numbers. Wouldn’t give us any rates of reoccurrence. Despite the fact that my clotting disorder blood tests came back negative now, they were positive while pregnant, so he still feels like the clotting disorders were the root of all this evil.
He said he wouldn't tell us to not try for a family based on my history. (Now, if things go wrong again, then . . .?? Great.) He thinks that if I have a single pregnancy, and if I’m treated with Lovenox, I should have a “successful outcome.” Or maybe he said “an outcome you’ll be happy with.” Something like that.
I tried to pin him down on that – “what does that mean, like, I’ll get to viability?” He said no, better than that. He said that we "should be able to get the picture that we have in our head of our child in kindergarten." O-kaaay.
I tried to get an idea of what the pregnancy would be like. I said, “you know, my bosses will freak if I tell them I’m pregnant again.” To which he responded, “Well, you know, its just a job.” To which *I* responded, “Yes, I know. And B and I are willing to do whatever we need to to make this happen. But I’d like to be prepared: I mean, if you’re telling us there will come a point where I’ll have to be in here every day or in the hospital or whatever, I want to be prepared for that.” To which he responded . . . well, did he even respond? I think he said something like, “no, that’s not what a ‘positive outcome’ looks like to me.” Fine.
I know he can’t give us guarantees. But freakin give us something to go on here! If I’m going to be out of work, we can’t afford the house. That’s fine, we’ll sell the house – just let me know. If we’re going to have a preemie who will be in NICU or can’t be in daycare – again, we’ll be thrilled and will make it work, just let me know. Just let me know if these things are a real enough possibility that it makes sense to plan for them. If it doesn’t happen, even better, but just let me know.
(*I'll* gilve you a guantee, and that's that I'll have high bp if I'm pregnant again, even though I never did last time! Two days ago my bp was 107/73 - today, it was 124/82. Anxious much?)
Ladies, I know everyone's medical history is different, but if you've been through something similar, how did your "going forward" appointment go? How would/did you emotionally and practically prepare?
Oh yeah, and we also asked about Baby B’s heart. He said that since it was most likely a structural defect there’s a 4-5% chance of reoccurrence and that they’d watch very closely for that. Finally. A number. Scheeze :)
On the test results front, it seems that no news is – well – no news. I feel so deflated right now, that’s the only way to describe it. Dr. C. was kind as he always is, but I just had so built up this appointment in my head, and it was horribly anticlimactic, to say the least.
I just don’t understand why doctors are so hesitant to give educated guesses. I mean, we don’t go to them for guarantees! I feel like I’m being underestimated – like they don’t trust me to realize that their opinions are just that. But I go to them because they’ve seen this stuff before and I'd like some thoughts on what normally happens. But anyway.
He wouldn’t give us any numbers. Wouldn’t give us any rates of reoccurrence. Despite the fact that my clotting disorder blood tests came back negative now, they were positive while pregnant, so he still feels like the clotting disorders were the root of all this evil.
He said he wouldn't tell us to not try for a family based on my history. (Now, if things go wrong again, then . . .?? Great.) He thinks that if I have a single pregnancy, and if I’m treated with Lovenox, I should have a “successful outcome.” Or maybe he said “an outcome you’ll be happy with.” Something like that.
I tried to pin him down on that – “what does that mean, like, I’ll get to viability?” He said no, better than that. He said that we "should be able to get the picture that we have in our head of our child in kindergarten." O-kaaay.
I tried to get an idea of what the pregnancy would be like. I said, “you know, my bosses will freak if I tell them I’m pregnant again.” To which he responded, “Well, you know, its just a job.” To which *I* responded, “Yes, I know. And B and I are willing to do whatever we need to to make this happen. But I’d like to be prepared: I mean, if you’re telling us there will come a point where I’ll have to be in here every day or in the hospital or whatever, I want to be prepared for that.” To which he responded . . . well, did he even respond? I think he said something like, “no, that’s not what a ‘positive outcome’ looks like to me.” Fine.
I know he can’t give us guarantees. But freakin give us something to go on here! If I’m going to be out of work, we can’t afford the house. That’s fine, we’ll sell the house – just let me know. If we’re going to have a preemie who will be in NICU or can’t be in daycare – again, we’ll be thrilled and will make it work, just let me know. Just let me know if these things are a real enough possibility that it makes sense to plan for them. If it doesn’t happen, even better, but just let me know.
(*I'll* gilve you a guantee, and that's that I'll have high bp if I'm pregnant again, even though I never did last time! Two days ago my bp was 107/73 - today, it was 124/82. Anxious much?)
Ladies, I know everyone's medical history is different, but if you've been through something similar, how did your "going forward" appointment go? How would/did you emotionally and practically prepare?
Oh yeah, and we also asked about Baby B’s heart. He said that since it was most likely a structural defect there’s a 4-5% chance of reoccurrence and that they’d watch very closely for that. Finally. A number. Scheeze :)
Wednesday, February 11, 2009
Test Results - Part 1
I don’t even know what to say. Here’s some background. I may have insinuated this in my last post, but I don’t remember and I’m in no mood to read it again. But here’s how it happened:
I’m in the hospital. The great and powerful MFM Dr. C - and I say that with all seriousness and no sarcasm, we love him! – anyways, the great and powerful Dr. C. is confused. Completely stumped. The source of his confusion? Me. Never had he seen a case of HELLP this early and this severe. Even with twins, which would exacerbate the condition, this was extreme. I was an enigma. (Yeah, now you know why its been such a help for me to find community with you ladies – my doctors made me feel like a freak!)
Anyway. He starts searching for answers. They’re running a bazillion blood tests. He’d been on the phone with the head geneticist at Mayo, and wants to send my blood up there for some hoody doody workup - but we held off because he learned that the $23k price tag wouldn’t be covered by insurance. (Are you freaking kidding me Dr. C.?)
Then the results for the clotting disorder tests started rolling in. Lupus Anticoagulant – positive. Great. We have an answer. Dr. C. was pacified. Mayo was put on hold and we called in a local hematologist, Dr. D., instead. Then more tests results came in. Now, anticardiolipin antibodies igm – also positive. As I treated with Dr. D. I learned I also tested positive for homo MTHFR. And something about Protein S was mentioned in passing.
I was on Lovenox for almost FOUR WEEKS. The cumadin wouldn’t work. My blood was t-h-i-c-k. I was definitely a clotter.
So, I go back today to get the results of my retest and confirm my diagnosis, and what do I hear?
Lupus anticoagulant – negative
Anticardiolipin antibodies igm – negative
Protein S – marginally deficient. ("marginally" as in 70 is normal; I was 69. Seriously?!)
So, Dr. D. was rejoicing. And I was crushed. Crushed. I had said that I didn’t know what results I was hoping for, but it seems I lied. I wanted everything to come pack positive – then we would at least have a theory as to why everything happened, and we would have something to treat next time around. Now - ? What do we have? I don’t even know.
So, I tried to ask Dr. D. some questions. I asked him – “Sooo, what do you think happened?" And I think (keep in mind that the brillance is communicated through a heavy Egyptian accent) – he said “Yez, you haad de Lupus Anticoagulant, but eet was transitory.”
Transitory? What? Like it comes and goes? That doesn’t make a ton of sense. So I asked, “Sooo, since I had it – did I have it because I was pregnant, or was it just a fluke?” To which he responds (I think!) – “A floouk.”
Are. You. Freaking. Kidding. Me? It just does not make sense to me that someone (i.e. me) can be such a freaking enigma because of a fluke.
In non-clotting news, I finally am getting my red blood cell count back up! However, my iron is super low. Low as in he wants the measure of whatever they measure to be 100 – and I’m at 16. And its been steadily dropping for the last three months.
He said he’s not super concerned because my RBC is going up, and it takes iron to make that happen. I get back and consult Dr. G.oogle – yes, to my surprise, “anemia” is defined as iron deficiency and a lack of RBCs. Who knew? (Well, you probably did, but I didn’t. I just thought it had to do with iron.)
So, I’m thorougly frustrated and thorougly confused. And I'm terrified. To me, the apparent lack of underlying disorders just means that my body completely freaked out and hated being pregnant. I don't know if that's true or rational, but that's what's in my head now.
Thank you all for thinking of me today. We're hopefully going to be able to meet with my MFM Dr. C. on Friday, and I just pray we get some answers then. In the meantime, if anyone makes more sense of all this than I do, please feel free to share. Ya’ll are the best :) (And yes, I said ya’ll.)
Oh yeah, and I am glad I’m not at high risk for strokes and stuff, but that’s really taking a back seat in my mind right now! (Although - wonder if my OB would put me back on the pill now?? Humm. . . .)
I’m in the hospital. The great and powerful MFM Dr. C - and I say that with all seriousness and no sarcasm, we love him! – anyways, the great and powerful Dr. C. is confused. Completely stumped. The source of his confusion? Me. Never had he seen a case of HELLP this early and this severe. Even with twins, which would exacerbate the condition, this was extreme. I was an enigma. (Yeah, now you know why its been such a help for me to find community with you ladies – my doctors made me feel like a freak!)
Anyway. He starts searching for answers. They’re running a bazillion blood tests. He’d been on the phone with the head geneticist at Mayo, and wants to send my blood up there for some hoody doody workup - but we held off because he learned that the $23k price tag wouldn’t be covered by insurance. (Are you freaking kidding me Dr. C.?)
Then the results for the clotting disorder tests started rolling in. Lupus Anticoagulant – positive. Great. We have an answer. Dr. C. was pacified. Mayo was put on hold and we called in a local hematologist, Dr. D., instead. Then more tests results came in. Now, anticardiolipin antibodies igm – also positive. As I treated with Dr. D. I learned I also tested positive for homo MTHFR. And something about Protein S was mentioned in passing.
I was on Lovenox for almost FOUR WEEKS. The cumadin wouldn’t work. My blood was t-h-i-c-k. I was definitely a clotter.
So, I go back today to get the results of my retest and confirm my diagnosis, and what do I hear?
Lupus anticoagulant – negative
Anticardiolipin antibodies igm – negative
Protein S – marginally deficient. ("marginally" as in 70 is normal; I was 69. Seriously?!)
So, Dr. D. was rejoicing. And I was crushed. Crushed. I had said that I didn’t know what results I was hoping for, but it seems I lied. I wanted everything to come pack positive – then we would at least have a theory as to why everything happened, and we would have something to treat next time around. Now - ? What do we have? I don’t even know.
So, I tried to ask Dr. D. some questions. I asked him – “Sooo, what do you think happened?" And I think (keep in mind that the brillance is communicated through a heavy Egyptian accent) – he said “Yez, you haad de Lupus Anticoagulant, but eet was transitory.”
Transitory? What? Like it comes and goes? That doesn’t make a ton of sense. So I asked, “Sooo, since I had it – did I have it because I was pregnant, or was it just a fluke?” To which he responds (I think!) – “A floouk.”
Are. You. Freaking. Kidding. Me? It just does not make sense to me that someone (i.e. me) can be such a freaking enigma because of a fluke.
In non-clotting news, I finally am getting my red blood cell count back up! However, my iron is super low. Low as in he wants the measure of whatever they measure to be 100 – and I’m at 16. And its been steadily dropping for the last three months.
He said he’s not super concerned because my RBC is going up, and it takes iron to make that happen. I get back and consult Dr. G.oogle – yes, to my surprise, “anemia” is defined as iron deficiency and a lack of RBCs. Who knew? (Well, you probably did, but I didn’t. I just thought it had to do with iron.)
So, I’m thorougly frustrated and thorougly confused. And I'm terrified. To me, the apparent lack of underlying disorders just means that my body completely freaked out and hated being pregnant. I don't know if that's true or rational, but that's what's in my head now.
Thank you all for thinking of me today. We're hopefully going to be able to meet with my MFM Dr. C. on Friday, and I just pray we get some answers then. In the meantime, if anyone makes more sense of all this than I do, please feel free to share. Ya’ll are the best :) (And yes, I said ya’ll.)
Oh yeah, and I am glad I’m not at high risk for strokes and stuff, but that’s really taking a back seat in my mind right now! (Although - wonder if my OB would put me back on the pill now?? Humm. . . .)
Tuesday, February 10, 2009
November 10, 2008
There are two dates every month that make me catch my breath: the 10th and the 12th. November 12th was the day our babies were born still. But November 10th was the day it all started falling apart. The 10th is the day that I clearly remember, that I replay in my head over and over. . . after that, it’s all a bit of a blur. Today marks three months from the 10th.
I know this post will be lengthy. Feel free to skip it (but come back tomorrow!) But the memories are so clear in my head, I have to write them out. . .
November 10 was a Monday. We had spent all weekend cleaning out the office-to-be-nursery. B put the cribs together. We stood back and looked at the room and the two cribs together and just said: “Wow! We’re having twins!”
FROM BAD
Monday morning I went to court to argue a motion. I was wearing my favorite black pantssuit and red heels. And I won. That afternoon we went for our “big” ultrasound at our MFM’s office. They looked at and measured every perfect inch of our tiny babies. For over an hour B and I watched them and talked to them, and fell more in love with them.
Baby A looked perfect. But while looking at Baby B, the tech said she couldn’t get a good picture of her heart. She called in one of the MFM doctors, who agreed that she couldn’t get a good picture, but seemed to think there might be a problem with the left side of her heart. She scheduled us to come back in one week and retest; hopefully it would be easier to get information at that point. Baby B was smaller; maybe it was just too early to see well.
The doctor also asked for permission to rerun our amnio test for Baby B. She thought that Baby B’s heart problem (if there was one) could be a sign of the generic condition DiGeorge’s Syndrome – a condition illustrated by heart defects and small stature. While she still hoped that everything was fine with Baby B, we discussed that, if the next ultrasound did not show anything different, we would have to meet with a pediatric cardiologist. Baby B would likely need surgery immediately after delivery.
We went from the ultrasound to my OB’s office, where we continued to discuss the ultrasound. After about 30 minutes, my OB switched topics and said that I was spilling protein in my urine. "Do you have an infection?" she asked? "Anything going on?" "No, no" I said, "Nothing that I haven't already told you." She wanted to do bloodwork "stat." We said okay and didn’t think much of it. B and I didn’t know anything about protein, except that I was supposed to eat it! As we were leaving I did stop to ask her – was any of this related? “Humm, good question,” she said, almost thoughtfully. “I don’t think so.”
It was near 5:00 by the time we left my OB’s office. I remember calling my mom as I pulled out of the parking lot: “Mamma. Try to not freak out. And I don’t have any answers. But they think something’s wrong with my little girl.” And as I was saying those words, I saw the lab car pulling in the parking lot to pick up my blood samples.
TO WORSE
I went home and changed. Black yoga pants and a yellow hoodie now. And we started making supper – steak fajaitas. Around 7:00, we were about to fill our plates when my OB called.
She said that my liver enzyme levels were up and my platelet count was down. She wanted me to go to the hospital that night so they could rerun the tests and monitor me for “a few days” – or at least long enough to do a 24 hour urine test. This was all gibberish to me – I’d never heard of enzymes or platelets before – but I knew she was looking out for me and my babies so I went along with it. She said to just go triage and they would decide where to put me. She had a c-section at the hospital that night, and she would check in with me once she was done.
I tried to eat our dinner and help B clean up the dishes. But I did understood enough to be flustered. So he cleaned up while I packed my bag. I packed my makeup, my straight iron, some comfy clothes, a book. . . B said he would go to work for me the next day and pick up some files. As far as I was concerned, I was checking in for a few days of rest and relaxation.
As I was packing my bags my mind necessarily went to the “worst case” scenario. The worst case I came up with would be bed rest – perhaps even hospital bed rest – for the remainder of my pregnancy. That was a looong time, and the thought was terrifying to me. I would go crazy. We’d go broke. If I had to stay in the hospital, how would I get to see enough of B? We spend all our time together. And what about the holidays? . . . . But, I bargained, I would absolutely do any of it, with a willing and happy spirit, if Baby B would just be okay. I knew one thing probably had nothing to do with the other, but bargaining’s never rational. Besides, I was focused on our babies. Particularly Baby B. Potential bedrest – well, that would be my burden to bear. Just so long as the babies were okay . . .
We got to the hospital around 8:00. At some point my OB must have mentioned preeclampsia or toxemia to me, because the nurse at the desk kept asking me why I was there (even though she was supposedly told to expect me), and I didn’t know anything to say other than “suspected toxemia or preeclampsia.” She didn’t like that answer; she wanted an actual diagnosis to put into the computer. I told her I didn’t have one.
We waited and waited, and were finally admitted and in our room sometime after 9:00. I joked with the nurse about how I was finally going to get to catch up on my leisure reading. I'd been resisting reading T.wilight, but this seemed as good a time as any to start.
We were in a Labor and Delivery room, although I didn’t think anything of that, and the first nurse came in around 9:30 or 10:00 to put in an IV port. She said it was just so they didn’t have to keep sticking me; they could use the IV port for everything. Imagine my surprise when the tech came to take my blood and she stuck me again! All I knew at this point was that they were going to rerun the tests that were conducted at my OB’s office to make sure the results were right.
Sometime after 11:00 I convinced B to go home. He had to work the next day, of course, and I preferred that he be at home with the kids (our four-legged ones) anyways. He made me promise to call him if anything happened, no matter what the time, kissed me and went on his way.
TO - there's no words
Not more than a few minutes later my OB came in. I had just been digging in my bag for my book and was settling down to read. She asked where B was. I said that I had sent him home: “Why, do you need him?” She said: “Yeah, I do. Can you ask him to come back?” So, I called B. He didn’t ask any questions, but just got in the car and was back in minutes.
My OB came back in. The nurse was with her, as was someone she introduced as Dr. C. with MFM. That should have told me something right then: it was midnight, and one of the best doctors in Na.shville was in my room in a mock turtleneck. Things were bad.
Dr. C. said that I had HELLP Syndrome, which was very serious, and the only way to “cure” it was to deliver the babies and placenta. I looked him calmly in the face, gave a half-laugh and said, “Well that’s not good!” I thought he meant we’d have to deliver early and they’d be premature.
He kept telling us how serious the disease was, and finally they said that they would leave us alone and give us some time. That confused me. When they left, I finally looked at B and it hit me – they want to take our babies now! Oh my gosh, that couldn’t be possible – it didn’t make any sense at all! The doctors came back in and I started arguing. Actually, those who know me would expect me to argue. But it was more like I was pleading, grasping at straws.
I was just 19w2d at this point. I asked them to please just keep me here in the hospital for a few weeks, I promised I’d be a good patient! Dr. C. explained that my liver and kidneys were shutting down. He tried to be gentle. He tried to be soft with his words. But we weren't getting it. I just kept shaking my head back and forth. I would do what it took to save these babies. I remember thinking, "Hey! You say my liver's not working - but isn't that what dialysis is for?!" There has got to be something we can do!
Finally Dr. C. said: “You’re dying. Your organs are shutting down. You will not live five weeks." In other words - "You will not live long enough to give your babies a chance.”
It didn’t make sense, I had just happened to have an appointment that day. There had been no signs or symptoms! B and I weren’t buying it. “What would have happened if we hadn’t happened to go to the OB today?” B asked. Dr. C. responded: “Within 48 hours she would have seized or hemorrhaged.” When it strikes early, it progresses quickly. He said: “There is nothing you can do.”
Moving on to practicalities, I then tried to get them to let me go to work the next day and get my files in order. “I’ll come back tomorrow!” I promised. They just shook their heads at me. Then I tried to convince them to do a c-section. The thought of having to deliver terrified me. Labor had always terrified me anways, and I could not experience that, go through that, knowing what would be the result. But a c section was dangerous considering my propensity to bleed and hemorrhage, and it could potentially scar my uterus.
They left us alone again. It was probably 1:00 in the morning by now. And I just – I don’t know what happened. I didn’t freak out, I don’t think. I remember crying, but I wasn’t hysterical. I was just so tired. I just wanted to curl up with B. They kept asking us if they could call anyone. “No, no.” we said. “Its just us.” Why would anyone want to come in town for this? But I did call my mom (who of course promptly collected my sister and began the 3 hour drive). All I said was: “Mamma, I’m sick. And they want to induce me. I've gotta go." After my call earlier that day, she must have been so confused.
Finally the doctors came back in. They must have been able to tell we’d finally been defeated. I climbed back in bed and got under the covers. And they began the magnesium drip to try to prevent a seizure. They put me in compression stockings to prevent a blood clot. And they gave me drugs to induce labor. And the wait began.
My blood pressure was spiking dangerously. There were issues with my pulse and oxygen levels. I wasn’t allowed any food or liquids. The magnesium made me weak and I wasn’t allowed out of bed. My red blood cell count was dropping and I was severely anemic. They were worried about a pulmonary embolism, and brought in an x-ray machine to look at my lungs. Whatever was going on with my kidneys and liver. And something about my heart and calcium levels? Who knows. . .
The doctors didn’t see any chance of an epidural because my platelets were so low. No one had told me this. They offered me demerol for the pain, but it made me nauseous. Finally, with lots of steroids, my platelets rose enough that the anesthesiologist agreed to an epidural.
And B just sat by my side and kept hitting that epi button. Just kept trying to make it all go away.
I know this post will be lengthy. Feel free to skip it (but come back tomorrow!) But the memories are so clear in my head, I have to write them out. . .
November 10 was a Monday. We had spent all weekend cleaning out the office-to-be-nursery. B put the cribs together. We stood back and looked at the room and the two cribs together and just said: “Wow! We’re having twins!”
FROM BAD
Monday morning I went to court to argue a motion. I was wearing my favorite black pantssuit and red heels. And I won. That afternoon we went for our “big” ultrasound at our MFM’s office. They looked at and measured every perfect inch of our tiny babies. For over an hour B and I watched them and talked to them, and fell more in love with them.
Baby A looked perfect. But while looking at Baby B, the tech said she couldn’t get a good picture of her heart. She called in one of the MFM doctors, who agreed that she couldn’t get a good picture, but seemed to think there might be a problem with the left side of her heart. She scheduled us to come back in one week and retest; hopefully it would be easier to get information at that point. Baby B was smaller; maybe it was just too early to see well.
The doctor also asked for permission to rerun our amnio test for Baby B. She thought that Baby B’s heart problem (if there was one) could be a sign of the generic condition DiGeorge’s Syndrome – a condition illustrated by heart defects and small stature. While she still hoped that everything was fine with Baby B, we discussed that, if the next ultrasound did not show anything different, we would have to meet with a pediatric cardiologist. Baby B would likely need surgery immediately after delivery.
We went from the ultrasound to my OB’s office, where we continued to discuss the ultrasound. After about 30 minutes, my OB switched topics and said that I was spilling protein in my urine. "Do you have an infection?" she asked? "Anything going on?" "No, no" I said, "Nothing that I haven't already told you." She wanted to do bloodwork "stat." We said okay and didn’t think much of it. B and I didn’t know anything about protein, except that I was supposed to eat it! As we were leaving I did stop to ask her – was any of this related? “Humm, good question,” she said, almost thoughtfully. “I don’t think so.”
It was near 5:00 by the time we left my OB’s office. I remember calling my mom as I pulled out of the parking lot: “Mamma. Try to not freak out. And I don’t have any answers. But they think something’s wrong with my little girl.” And as I was saying those words, I saw the lab car pulling in the parking lot to pick up my blood samples.
TO WORSE
I went home and changed. Black yoga pants and a yellow hoodie now. And we started making supper – steak fajaitas. Around 7:00, we were about to fill our plates when my OB called.
She said that my liver enzyme levels were up and my platelet count was down. She wanted me to go to the hospital that night so they could rerun the tests and monitor me for “a few days” – or at least long enough to do a 24 hour urine test. This was all gibberish to me – I’d never heard of enzymes or platelets before – but I knew she was looking out for me and my babies so I went along with it. She said to just go triage and they would decide where to put me. She had a c-section at the hospital that night, and she would check in with me once she was done.
I tried to eat our dinner and help B clean up the dishes. But I did understood enough to be flustered. So he cleaned up while I packed my bag. I packed my makeup, my straight iron, some comfy clothes, a book. . . B said he would go to work for me the next day and pick up some files. As far as I was concerned, I was checking in for a few days of rest and relaxation.
As I was packing my bags my mind necessarily went to the “worst case” scenario. The worst case I came up with would be bed rest – perhaps even hospital bed rest – for the remainder of my pregnancy. That was a looong time, and the thought was terrifying to me. I would go crazy. We’d go broke. If I had to stay in the hospital, how would I get to see enough of B? We spend all our time together. And what about the holidays? . . . . But, I bargained, I would absolutely do any of it, with a willing and happy spirit, if Baby B would just be okay. I knew one thing probably had nothing to do with the other, but bargaining’s never rational. Besides, I was focused on our babies. Particularly Baby B. Potential bedrest – well, that would be my burden to bear. Just so long as the babies were okay . . .
We got to the hospital around 8:00. At some point my OB must have mentioned preeclampsia or toxemia to me, because the nurse at the desk kept asking me why I was there (even though she was supposedly told to expect me), and I didn’t know anything to say other than “suspected toxemia or preeclampsia.” She didn’t like that answer; she wanted an actual diagnosis to put into the computer. I told her I didn’t have one.
We waited and waited, and were finally admitted and in our room sometime after 9:00. I joked with the nurse about how I was finally going to get to catch up on my leisure reading. I'd been resisting reading T.wilight, but this seemed as good a time as any to start.
We were in a Labor and Delivery room, although I didn’t think anything of that, and the first nurse came in around 9:30 or 10:00 to put in an IV port. She said it was just so they didn’t have to keep sticking me; they could use the IV port for everything. Imagine my surprise when the tech came to take my blood and she stuck me again! All I knew at this point was that they were going to rerun the tests that were conducted at my OB’s office to make sure the results were right.
Sometime after 11:00 I convinced B to go home. He had to work the next day, of course, and I preferred that he be at home with the kids (our four-legged ones) anyways. He made me promise to call him if anything happened, no matter what the time, kissed me and went on his way.
TO - there's no words
Not more than a few minutes later my OB came in. I had just been digging in my bag for my book and was settling down to read. She asked where B was. I said that I had sent him home: “Why, do you need him?” She said: “Yeah, I do. Can you ask him to come back?” So, I called B. He didn’t ask any questions, but just got in the car and was back in minutes.
My OB came back in. The nurse was with her, as was someone she introduced as Dr. C. with MFM. That should have told me something right then: it was midnight, and one of the best doctors in Na.shville was in my room in a mock turtleneck. Things were bad.
Dr. C. said that I had HELLP Syndrome, which was very serious, and the only way to “cure” it was to deliver the babies and placenta. I looked him calmly in the face, gave a half-laugh and said, “Well that’s not good!” I thought he meant we’d have to deliver early and they’d be premature.
He kept telling us how serious the disease was, and finally they said that they would leave us alone and give us some time. That confused me. When they left, I finally looked at B and it hit me – they want to take our babies now! Oh my gosh, that couldn’t be possible – it didn’t make any sense at all! The doctors came back in and I started arguing. Actually, those who know me would expect me to argue. But it was more like I was pleading, grasping at straws.
I was just 19w2d at this point. I asked them to please just keep me here in the hospital for a few weeks, I promised I’d be a good patient! Dr. C. explained that my liver and kidneys were shutting down. He tried to be gentle. He tried to be soft with his words. But we weren't getting it. I just kept shaking my head back and forth. I would do what it took to save these babies. I remember thinking, "Hey! You say my liver's not working - but isn't that what dialysis is for?!" There has got to be something we can do!
Finally Dr. C. said: “You’re dying. Your organs are shutting down. You will not live five weeks." In other words - "You will not live long enough to give your babies a chance.”
It didn’t make sense, I had just happened to have an appointment that day. There had been no signs or symptoms! B and I weren’t buying it. “What would have happened if we hadn’t happened to go to the OB today?” B asked. Dr. C. responded: “Within 48 hours she would have seized or hemorrhaged.” When it strikes early, it progresses quickly. He said: “There is nothing you can do.”
Moving on to practicalities, I then tried to get them to let me go to work the next day and get my files in order. “I’ll come back tomorrow!” I promised. They just shook their heads at me. Then I tried to convince them to do a c-section. The thought of having to deliver terrified me. Labor had always terrified me anways, and I could not experience that, go through that, knowing what would be the result. But a c section was dangerous considering my propensity to bleed and hemorrhage, and it could potentially scar my uterus.
They left us alone again. It was probably 1:00 in the morning by now. And I just – I don’t know what happened. I didn’t freak out, I don’t think. I remember crying, but I wasn’t hysterical. I was just so tired. I just wanted to curl up with B. They kept asking us if they could call anyone. “No, no.” we said. “Its just us.” Why would anyone want to come in town for this? But I did call my mom (who of course promptly collected my sister and began the 3 hour drive). All I said was: “Mamma, I’m sick. And they want to induce me. I've gotta go." After my call earlier that day, she must have been so confused.
Finally the doctors came back in. They must have been able to tell we’d finally been defeated. I climbed back in bed and got under the covers. And they began the magnesium drip to try to prevent a seizure. They put me in compression stockings to prevent a blood clot. And they gave me drugs to induce labor. And the wait began.
My blood pressure was spiking dangerously. There were issues with my pulse and oxygen levels. I wasn’t allowed any food or liquids. The magnesium made me weak and I wasn’t allowed out of bed. My red blood cell count was dropping and I was severely anemic. They were worried about a pulmonary embolism, and brought in an x-ray machine to look at my lungs. Whatever was going on with my kidneys and liver. And something about my heart and calcium levels? Who knows. . .
The doctors didn’t see any chance of an epidural because my platelets were so low. No one had told me this. They offered me demerol for the pain, but it made me nauseous. Finally, with lots of steroids, my platelets rose enough that the anesthesiologist agreed to an epidural.
And B just sat by my side and kept hitting that epi button. Just kept trying to make it all go away.
Tuesday, January 27, 2009
A Hollow Victory
I used to feel so victorious when I thought we had “conquered” infertility. We had gained what so many IF-ers desire: the knowledge that we could get pregnant. But that knowledge didn’t get us very far.
I was so elated once we passed the first trimester. We didn’t have to worry about vanishing twin syndrome, and the risk of miscarriage was slim to none. But that victory, also, proved to be hollow.
Our ability to get pregnant seems insignificant now. In fact, we got pregnant relatively easily as far as IF stories go (20 months, multiple break cycles due to cysts, and IUI plus injectibles) - although you never could have convinced me of that at the time. Each person's journey causes pain for that person.
But I also realize that some couples go through years of pain and invasive treatments, spend tens of thousands of dollars, if not more, and continue to suffer a broken heart month after month. . . I am thankful that our IF journey was as short and easy as it was, relatively speaking. And I have to remind myself to not assume that it will be just as easy for us to get pregnant again. (Isn’t it interesting how “easy” becomes a relative term?)
But regardless – none of that matters now. Because now we have to face it all again. We’re starting over, empty-handed.
Or maybe not.
And the possibility of "not" is what I’m struggling with right now.
If you’ve never been pregnant, at least there’s options to try to get pregnant – IUI, IVF, ICSI, PGD, donor egg and donor sperm, and even donor embryos. I’m not suggesting any of those options are easy. Or cheap. And its terribly unfair that anyone should be faced with these choices to achieve what comes so easily for others. I so respect and ache for the women who have to decide whether to take each step after painful step in the IF treatment process.
But I’m terrified that we’re not going to have any decisions to make. That we won't have any options. That it won’t matter if I can get pregnant, because I won't be able to stay pregnant. That B and I will be able to make beautiful babies, but I won't be able to carry them and give them what they need. That I won't be able to deliver a baby with a fair chance at survival. And I'm scared that we might have to go through this heartache again to even figure that out.
Then what? Then what would be our options?
To get so close. . . To think you had overcome, only to realize that the biggest obstacle is still before you. And is potentially insurmountable.
I go for more testing tomorrow. We should have the results in a few weeks. I'm so confused that I don't even know anymore what results to hope for. But please keep us in your thoughts nonetheless.
I was so elated once we passed the first trimester. We didn’t have to worry about vanishing twin syndrome, and the risk of miscarriage was slim to none. But that victory, also, proved to be hollow.
Our ability to get pregnant seems insignificant now. In fact, we got pregnant relatively easily as far as IF stories go (20 months, multiple break cycles due to cysts, and IUI plus injectibles) - although you never could have convinced me of that at the time. Each person's journey causes pain for that person.
But I also realize that some couples go through years of pain and invasive treatments, spend tens of thousands of dollars, if not more, and continue to suffer a broken heart month after month. . . I am thankful that our IF journey was as short and easy as it was, relatively speaking. And I have to remind myself to not assume that it will be just as easy for us to get pregnant again. (Isn’t it interesting how “easy” becomes a relative term?)
But regardless – none of that matters now. Because now we have to face it all again. We’re starting over, empty-handed.
Or maybe not.
And the possibility of "not" is what I’m struggling with right now.
If you’ve never been pregnant, at least there’s options to try to get pregnant – IUI, IVF, ICSI, PGD, donor egg and donor sperm, and even donor embryos. I’m not suggesting any of those options are easy. Or cheap. And its terribly unfair that anyone should be faced with these choices to achieve what comes so easily for others. I so respect and ache for the women who have to decide whether to take each step after painful step in the IF treatment process.
But I’m terrified that we’re not going to have any decisions to make. That we won't have any options. That it won’t matter if I can get pregnant, because I won't be able to stay pregnant. That B and I will be able to make beautiful babies, but I won't be able to carry them and give them what they need. That I won't be able to deliver a baby with a fair chance at survival. And I'm scared that we might have to go through this heartache again to even figure that out.
Then what? Then what would be our options?
To get so close. . . To think you had overcome, only to realize that the biggest obstacle is still before you. And is potentially insurmountable.
I go for more testing tomorrow. We should have the results in a few weeks. I'm so confused that I don't even know anymore what results to hope for. But please keep us in your thoughts nonetheless.
Friday, January 16, 2009
Let's start at the very beginning
On A.pril 30, 2005, I married my best friend, B. Cliché, but true. Together with our two puppies (they will be “puppies” no matter how old they become), we made a small but happy family. We worked on our careers and setting up our home. We learned to love and lean on each other, and became a perfect team.
In January 2007 we started working on expanding our little family. Finally, after 20 months, and IUI plus injectibles, we found out I was pregnant with twins – Baby Boy A and Baby Girl B. We were so overwhelmed: it was perfect. Even those dreams we didn’t know we had came true.
Or so we thought. On Nov.ember 10, 2008, after a seemingly normal OB appointment, I was sent to the hospital and diagnosed with severe HELLP Syndrome and preeclampsia. At only 19 weeks 2 days, it was a death sentence: for the babies, and possibly for me. On Nov.ember 12, 2008, at just 19 weeks 4 days, our precious babies were born. They were too small to survive, but so beautiful and perfect.
We will never be the same. And we’re trying to figure out what has been so aptly referred to as our “new normal.”
So why start a blog? Why now, after having already faced infertility? After already experiencing the loss of our babies?
Because it is only now, after living through the worst days of our lives, that I fully appreciate the power of relationships formed with virtual strangers based on common experiences. I always thought it was slightly ridiculous to search for friends online. I have a better husband than I deserve; we have wonderful, loving families and caring friends. But I also happened to be a member - a rather inactive and not very well known member - of a few message boards. And those women did for us what few others could do, or dared to do.
These virtual strangers told me: “You’re so strong” - and I believed it, and gained strength. I found others who lost their babies and was deeply saddened, but also reassured to know that I wasn't alone. And I gained hope reading about a pre-e survivor who is pregnant again. These beatutiful women provided comfort as they cried with us for our sweet "babies;" as they called me a "mom." And these women made us realize that we can never say, "No one cares" or "No one understands."
I would never have made it through the past weeks and months without the communities of women who have been through or are going through infertility, multiple pregnancies, preeclampsia and HELLP, pregnancy loss . . .
So, I’m blogging for myself, of course. But also because we need the continued strength and support of these strangers we now consider friends. And because maybe, just maybe, reading our story might also help someone else feel slightly less alone.
In January 2007 we started working on expanding our little family. Finally, after 20 months, and IUI plus injectibles, we found out I was pregnant with twins – Baby Boy A and Baby Girl B. We were so overwhelmed: it was perfect. Even those dreams we didn’t know we had came true.
Or so we thought. On Nov.ember 10, 2008, after a seemingly normal OB appointment, I was sent to the hospital and diagnosed with severe HELLP Syndrome and preeclampsia. At only 19 weeks 2 days, it was a death sentence: for the babies, and possibly for me. On Nov.ember 12, 2008, at just 19 weeks 4 days, our precious babies were born. They were too small to survive, but so beautiful and perfect.
We will never be the same. And we’re trying to figure out what has been so aptly referred to as our “new normal.”
So why start a blog? Why now, after having already faced infertility? After already experiencing the loss of our babies?
Because it is only now, after living through the worst days of our lives, that I fully appreciate the power of relationships formed with virtual strangers based on common experiences. I always thought it was slightly ridiculous to search for friends online. I have a better husband than I deserve; we have wonderful, loving families and caring friends. But I also happened to be a member - a rather inactive and not very well known member - of a few message boards. And those women did for us what few others could do, or dared to do.
These virtual strangers told me: “You’re so strong” - and I believed it, and gained strength. I found others who lost their babies and was deeply saddened, but also reassured to know that I wasn't alone. And I gained hope reading about a pre-e survivor who is pregnant again. These beatutiful women provided comfort as they cried with us for our sweet "babies;" as they called me a "mom." And these women made us realize that we can never say, "No one cares" or "No one understands."
I would never have made it through the past weeks and months without the communities of women who have been through or are going through infertility, multiple pregnancies, preeclampsia and HELLP, pregnancy loss . . .
So, I’m blogging for myself, of course. But also because we need the continued strength and support of these strangers we now consider friends. And because maybe, just maybe, reading our story might also help someone else feel slightly less alone.
Subscribe to:
Posts (Atom)
