Thanks, guys, it's been an incredibly long three and a half years, and the last few months, y'all have been an astronomical life saver. Thank you so much, truly!
It's been a while since I've updated, but I'm trying really hard not to freak out right now.
Up to this point, my OB has been really optimistic. I had my 12 week ultrasound a week ago as part of the routine genetic screening and everything looked really good. I saw my OB for a regular appointment on Tuesday, and she checked on ultrasound again to be sure of a normal fetal heart rate; it looked good at 159 bpm.
Yesterday though, I started spotting- bright red, so fresh blood. Went to the ER, and they did another ultrasound. Baby was moving, and had a heart rate of 150 bpm. They diagnosed a threatened miscarriage and told me to follow up with OB.
Touched base with her today. The spotting is light, but still there. Now it is rust-colored instead of bright red, which my OB says is better than it still being bright red because it indicates old blood instead of continued bleeding. She is having me wait and watch while taking it easy.
I know spotting is normal for some people, but I feel so jumpy and on edge. The thought of getting this far just to maybe lose another pregnancy turns my stomach and nerves into knots, and I don't know what to do to reassure myself. It's driving me crazy.
@kathrenne I’m so sorry you are going through this. Being in limbo is so hard. FX that your doc is right and the old blood is a good sign. I hope you get some answers soon and that it is good news.
@kathrenne I have been wondering how you are doing. I’m sorry to hear about the spotting but it definitely could be nothing. I am hoping so hard for good things for you and your baby. Keep us updated if you can.
The bleeding settled down for now, and my doctor is hoping it was just due to hormone shifts.
It's a wait and watch situation for now because even at 13 weeks, there aren't really any kind of effective interventions. Mostly I'm just trying to take it easy and not overwork myself. Not much else I can do. :-/
I know it's been a while, but I wanted to go ahead and update this thread as I've gotten new information.
A week ago I had an anatomy ultrasound, and this baby girl looks fantastic; such a little fighter!
In the process of just trying to rule out potential issues and because the losses were never adequately explained, the maternal fetal medicine specialist opted to do some additional testing, including another full blood panel checking for vitamin deficiencies, and clotting disorders we may have missed, and an updated echocardiogram to reassess a heart defect.
In the process of the blood screening, it's been discovered that I have a rare genetic mutation known a PAI-1 4G/4G. The doctors now believe that this is what was causing recurrent losses.
To prevent 2nd trimester loss of the current pregnancy, tomorrow I will be starting with an injectable blood thinner (I believe Lovonox sp?). I will need to have a scheduled delivery and will have to stop the blood thinner a few days before that and resume after delivery for six weeks. Hopefully, the rest will go as planned.
I don't know what this means for future pregnancies, or if I will try. For now, it's a day-at-a-time kind of thing.
@kathrenne thanks for the update. I’m glad LO is a fighter and that they decided to do additional testing. I hope that all goes well with blood thinner and that you have a healthy pregnancy and delivery with a healthy little girl!
@kathrenne I am glad to see the update that your LO is doing well! I am also relieved that they seem to have identified the issue. I am hopeful the Lovenox will prevent any issues. May I ask - had you had a regular clotting test before? You are in my thoughts!
This actually isn't the first time I've been tested for clotting disorders. Two years ago my IB sent me to a hematologist to try to rule them out, and the tests that she ran had come out negative. This included looking for the more common APS and Lupus.
I don't think PAI-1 4G/4G was tested for, however, because it's pretty rare and there really hasn't been much research done with it as a result. I'm not sure if it's really included in standard clotting/immunoligial testing.
@kathrenne So happy to hear that your baby is doing good!!! That's great you were able to get extra testing and figure out the possible cause of your miscarriages, and now you've got a plan. I bet it's still scary and I'll be sending you lots of positive vibes!
I had a follow up on Monday with the maternal fetal medicine specialist that was initially supposed to go over updated echo results as well as management for the PAI-1 4G/4G moving forward. It is standard practice for an ultrasound to be performed at all of these appointments just to track fetal growth and to monitor for any changes.
The tech told me when she started that it would only take a few minutes because it was a handful of measurements and that's it, but 10 minutes became 20 and 20 minutes became 45 with the tech refusing to say anything. She left, came back, took more images, then left again. The doctor came in, quietly took more images himself, and then told me that the baby is accumulating fluid in her abdominal cavity. Apparently this is called fetal ascites.
It is not good, but we don't know how bad it is until the doctor figures out the cause, or even if he does. Right now, we are testing for what feels like literally everything. They've completed genetic screening for a couple hundred mutations for me, and we are waiting for similar screening results from her to try to find any genetic disease indicating developmental abnormalities in the gi tract, and they are testing for any potential infections that could be the cause.
Right now, it is isolated, meaning there's only one pocket of fluid and only in the abdomen. If more fluid in different locations begin to accumulate, especially around the heart and/or lungs, then her odds of survival decrease dramatically and they'll change the diagnosis to fetal hydrops.
While the doctor tries to figure out what is happening, the treatment plan is to push steroid injections to force her lungs to mature as fast as is safely possible, and to just be prepared to deliver her if at any point she seems like her treatment plan is better outside than in.
Right now I'm 25w5d, so obviously, delivering is not ideal. I'm just really, really angry because I feel like given everything, I should have at least one pregnancy that isn't so complicated. I feel like, as moms, the one place that we can be sure is safe for our babies is inside, but now I feel like that's as big of a crap shoot as anywhere else.
I'm tired of worrying, but there's a neverending stream of things to worry about. I don't even know what I will do with myself if I got this far with her only to lose her now. It might actually break me. I just don't even know anymore.
@kathrenne I'm so sorry you are going through this and I am pulling for you and your little girl. You are so right, you should not have to go through this complication on top of everything else you have been through.
I am so sorry, that is just not fair. I hope it's something that can be safely managed or fixed somehow.. I can't imagine the stress you are under. I'll be thinking of you both.
@kathrenne I'm so sorry to hear that you're going through this. What a hard journey this has been. I can't even begin to imagine what this feels like. Much love to you and well wishes. Keeping you and your little girl in my thoughts.
@kathrenne I've been thinking about you. I truly hope they're able to help your little fighter. I'm so glad you finally got some answers as to what's been going on, and hopefully they will know how to prevent future losses for you. Please keep us updated as you go.
The current status right now is that I've tested negative for 175 genetic carrier markers, and she's tested negative for trisomy disorders, chromosomal genetic disorders, and chromosome deletion disorders, and I've tested negative for infectious diseases that might cause her issues (toxoplasmosis, parvovirus, etc). They haven't found any more indicators that she has a congenital defect causing the ascites.
We've been doing ultrasounds every week to make sure the fluid is manageable and for now, it seems to be reducing on it's own, which is good, but it does mean that no cause has been found, so if there is a bowel blockage or perforation, it'll need to be treated surgically after birth.
Right now, the goal is to get to 38 weeks for a scheduled induction and to continue to closely monitor her, and we'll deliver her early if the scores progresses into fetal hydrops.
@kathrenne I am relieved that you haven't been able to deliver yet and the genetic tests all look good. I am rooting for you and your girl, I hope she stays in as long as is safe and doesn't require surgery. Just so unfair that you have to go through these complications on top of everything else. I'm rooting for you and your girl!
The cause of the fetal ascites was never determined; over the course of about a month, it very slowly disapated and resolved itself. The maternal fetal specialist said that this happens sometimes and that in those cases, a cause is never determined even after delivery.
Since that point, however, there have been multiple other complications that seem to have a completely indeterminable cause.
Several weeks ago at the grocery store with my husband, the breathing and fatigue issues I'd had for weeks (dismissed as "normal pregnancy stuff") became so bad that my husband left the cart and drove me to the hospital because I almost fainted. At the hospital, the baby seemed fine, but my resting heart rate kept jumping from 85 to 130 bpm despite me just lying on a gourney. They ran a CBC which determined that my hemoglobin was at 8.2 and hematocrit was ar 28%, so severely anemic (frame of reference: the standard for a blood transfusion up until recently was hemoglobin at <10 and hematocrit at <30%). The hospital looked for an internal bleed, but was unable to find one. I was sent home with instructions to return if I felt worse and to follow up with my hematologist asap.
I saw my hematologist the following week; I almost passed it between the parking lot and the building, but was moderately okay in the waiting area. However, walking from the waiting area to the exam room, I lost consciousness and came to surrounded by nurses and doctors in their chemo infusion area while they were drawing for another CBC. Those results came back within 40 minutes with "critically low" hemoglobin of 7.8 and hematocrit at 24.6%.
Hematologist refused to let me leave without immediately beginning an iron infusion protocol, so at this point, I've been going in for weekly and sometimes biweekly iron infusions.
The first week after getting an infusion, my weight shot up by 12 pounds, my resting heart rate is now consistently over 100 bpm and will peak randomly at about 140, and I have breathing issues. The MF specialist can't figure out what is happening; despite my blood pressure not being "classically high" he tested my anyway, and those labs were fine. He ran another CBC and in three weeks, my hemoglobin is only back up to 8.0 and hematocrit is ar 26.7%, but still no evidence of a bleed. My cardiologist believes that the cardiac episodes are related. To the anemia, so he can't treat it. My MF specialist says, "Something is going on and we need to get to the bottom of it, but I have no idea what to look for because it seems like anemia not caused by iron deficiency, but you don't have the genetic issues known. To cause it," so he and my hematologist are discussing moving from iron infusions to straight up blood infusions which, apparently, can do weird things to the placenta and also can affect future pregnancies. My OB is at a complete loss and feels like this is out of her league.
The bottom line is that the whole team of doctors feels that these issues would all resolve by delivering early, but at the same time, they are all afraid to deliver because the simultaneous risks of the PAI-1 4G/4G clotting disorder increasing stroke risk, and the fact that I don't actually have the blood volume to safely deliver even nothing goes wrong.
I have an appointment with each specialist this week and they are working together to try to figure out what to do. They have me continuing lovenox injections and iron infusions while they work on it, but have also told me to talk to family about potentially donating blood directly to reduce transfusion risks if we have to go that route. I'll be 35 weeks tomorrow; initially they were going to induce at 38, now they are looking at the latest 37 weeks, or sooner depending on symptoms and what they figure out.
My husband is really scared that it may come down to me having to choose between my self or the baby, and he's made his preference for me to pick myself pretty clear.
But honestly, I don't know. Given how many I've already lost, I really don't know how I would go about trying to figure it out. It is definitely not the same as consenting to terminating an ectopic pregnancy, and I really don't know,what I'll do if my doctors can't come up with something.
@kathrenne i'm so sorry to hear about this! That is so scary. Why do they think you would have to choose between yourself and the baby? At this point you're far enough along the baby should be ok, even if born now, and it will have to come out somehow... I hope they're able to come up with a plan, and hopefully figure out what exactly is going on. Is it maybe something to do with bone marrow? Sorry, I don't know a whole lot about blood disorders, but that is all very worrisome.
@kathrenne I'm so sorry for the continued difficulty in this pregnancy. I hope your drs can figure out how to deliver your baby safely. I think 35 weeks is close enough to full term that the baby should be ok. Should you perhaps be admitted to the hospital and put on bed rest there so they can monitor you? Is there a hospital nearby, or even a bit of a drive, where you could go that they have fetal medicine specialists who would know better what is going on? I am so sorry for all the stress. I am keeping you, your baby and your husband in my thoughts.
We're still waiting on results for some of the tests (it's been a really long week), but right now the MF specialist is relatively sure that I have peripartum cardiomyopathy (essentially heart failure that develops in the last month of pregnancy or within 5 months after delivery).
As of my last post, they thought I was severely anemic, and the choice with that was that getting a blood transfusion can affect the placenta, or there's a risk of me or the baby rejecting it. They thought at that time that delivering her would resolve the anemia and not put her at risk of the complications, but I am also anemic that they don't feel that I have enough blood to safely deliver. So the options at that time was to deliver with no transfusion and very little risk to her but substantial risk to me, or getting a transfusion and delivering her after, which substantially reduces my risk and increases hers.
In the process of assessing the safety of a blood transfusion, they were trying to assess fluid retention because I put on twelve pounds in a week after gaining slowly and steadily throughout the pregnancy. Fluid overload is a large risk in transfusions, and can lead to heart failure.
What they found is that I can't get a transfusion because what is causing the anemia is the early stage of congestive heart failure, and that I have fluid developing in my lungs already (pulmonary edema).
What I know is that right now, the baby looks good. If they could safely deliver her now, they probably would, they just aren't sure I can tolerate it. She's over 6 pounds, her practice breathing based on her diaphragm movement and fluid movement in her nose is solid; she likely wouldn't even need the NICU.
What I don't know is what the doctors want to do about delivery at this point. I hope to know more next week.
I haven’t posted in awhile, but felt the need to. I was 22 when I was diagnosed with congestive heart failure from a fluke virus on vacation that settled in my lungs. 3 years later, I delivered a healthy baby boy even though I battled a ton of issues along the way (eclampsia being one of them). I met with an MFM who compared my heart failure to the kind your doctor is concerned you may get (brought on my pregnancy) and it was scary. However, he told me success story after success story. I know your case is unique and it’s scary. You know best what is right for you. I would just plan for worst case and pray for best case. Have your family donate blood, deliver at 37 weeks (I delivered at 36 and my baby didn’t have to be in nicu at all). The smaller the baby is, the better it will be for your heart. TAKE the epidural - it is less strain on your heart so reduces your risk. They can give you something to help ensure your BP doesn’t lead to stroke. Seems like the biggest concern is the blood- if your team is there and ready to start giving you blood at delivery, I truly believe everything will be fine. While our cases our not one for one, I wanted to give you hope from someone who has been down a similar path. My son is now 2 and I’m pregnant with my second. I will pray for you and your family- and for your bundle of joy I believe you will be celebrating soon!
Thanks, that means a great deal to me. All of this has just been a long load and I feel like I'm always waiting for the next problem to come along.
I intend to take the epidural. For the children I had before all of the losses, I really feel that the epidural allowed me to rest before I had o get down to pushing, so I wasn't so tired. May not be an option this time because of the clotting disorder, it just depends on if delivery is scheduled or not. They can't give you an epidural if you had lovenox ithin 24 hours because it can cause an embolism in your spine. Scheduled they just had me stop early, and I'm hoping that's how we go.
Right now the plan is to deliver at the 37 week mark, on Wednesday. They are bringing me in Tuesday night for cervical ripening, fetal monitoring, and specialized cardiac monitoring.
My hematologist is having me in tomorrow morning to get one last iron infusion in under the wire. They haven't been helping a ton, but a little boost is better than nothing (in five weeks on infusions, I've gone from 7.8 to 8.9 for my hemoglobin count, still well below the 12.0 they want, and the 10.0 they hoped for). They'll check my blood counts before we start and regularly during labor to make sure there's no missed hemorrhage anywhere.
My heart has been doing okay-ish, but the tachycardia is still present, and there is still a build up of fluid in my lungs that hasn't cleared out due to the blood collecting there.
My OB's plan is to induce slowly to reduce the risk of uterine rupture and hyperstimulation, and to have a couple of units of blood ordered and ready on standby if bleeding becomes an issue. Vaginal delivery is preferred over c-section because generally it's half the blood loss, and luckily, this little girl is in a good position for it.
I won't be able to do a ton of moving around because of all the constant/various types of monitoring, so I will likely get the epidural early and let her labor down on her own over time with very small doses of pitocin so I can make sure I'm fairly rested when the hard work starts.
Her weight and her practice breathing are excellent; really, she's in really good shape.
The longer this goes on, the more I'm inclined to believe that the previous losses had to be due to undiagnosed blood issues, especially given that the PAI-1 4G/4G diagnosis wasn't discovered until this pregnancy.
I don't think I will be able to do this again and live through it. Getting this far has been a level of exhaustion that I can't describe because it feels like it exudes from my bones.
I am incredibly thankful for our Impossible Girl, and I have no regrets about continuing to try after so much discouragement, but I think she will be it for the sake of my own health and the wellbeing of my family.
I have always said and genuinely believe that it's up to each woman going through recurrent pregnancy loss to decide when is enough, and I can honestly say I've finally hit my own threshold. I'm terrified at the thought of ever doing this again.
Anyway, I'll try to update you guys later this week when our little raging badass is here and okay. Thank you so much for keeping me in your thoughts.
Labor and delivery went well, very well, actually. From Monday morning until I was admitted Tuesday night, I was contracting every 1-2 minutes on my own, but it wasn't causing any dilation or defacement. On Tuesday night they gave me a dose of cytotec, which moved the contractions along overnight, but by morning we were only at 2 centimeters, but throughout the night, the contractions were too close together (still 1-2 minutes apart) and they didn't want to hyperstimulate anything.
We started with a low dose of pitocin at 8am along with the OB breaking my waters, and after that, things moved very quickly. I pushed for less than a minute when it came time, and there were really no complications.
Our little girl was born at 11:49 am and was 7 pounds even, 20 inches long.
I didn't need a transfusion and my heart looks pretty good. My anemia is etting better every day, and the fluid in my lungs is starting to clear out. I've restarted the lovenox to avoid stroke during postpartum recovery, and that seems like it's going okay.
As far as our DD, she has a heart murmur with will require a complete echo in a few months, she's a bit jaundiced (not badly though), and she's failed her first two hearing tests. She will be tested for that again next week.
All of that notwithstanding, she is perfect and gorgeous and has already brought us a great deal of happiness. I think after this many losses, you really stop taking babies for granted.
I will leave this thread here, I think, because I want to believe that maybe what I did lose and eventually gained will bring other women hope with their own losses, but especially recurrent loss.
At the end of the day it's up to individuals to decide when they are done and when they want to keep going, and unfortunately, they will be given advice on this matter that is unsolicited and unwanted. Take it with a grain of salt and listen to your body and your gut above the advice of others.
For myself, I'll still check the board to offer advice, but for me, I think I'll put this thread to bed. Thank you all so much for you genourous support and keeping me in your thoughts. You are all awesome, and I am so thankful to have found you.
This is to the OP - I am 11.5 weeks after recurrent losses, last loss developed hives on my legs (was on prog. suppositories to bring up a low progesterone level), but miscarried early, around 7 weeks. This time I am again on suppositories because of low progesterone early on and have made it thus far to 11.5 weeks and have developed hives again (this time on my face). I am also on Lovenox for a clotting issue they discovered when trying to diagnose my recurrent MCs. And baby aspirin. I'm absolutely freaking out that the hives are pointing to another loss and I don't know that I can handle that... I will talk to my doctor next week, and will continue the progesterone regardless, but do you think I should press to add prednisone? I am afraid if i go off the progesterone supps my body will attach my placenta or something. Arrgh. This is excruciating. I hope everything is going well for you.
So, if you've been on progesterone the whole time, maintaining a constant level, I don't think the hives are necessarily related because they would have picked up during the initial increase in progesterone. If the hives are occurring with a noted increase in progesterone levels, then it's more likely that it is an allergic reaction and in that case, a steroid might be helpful.
I also want to add that diagnosing recurrent loss due to low progesterone is really complicated at best, because abnormal pregnancies tend to have progesterone deficits to begin with.
It's the chicken or the egg issue. If the pregnancy is abnormal and that's why progesterone is low, supplementing it won't fix it. For my losses, and especially ectopics, the progesterone was never good, but for the one that worked out, it was perfect.
I currently have an extra data point because we (very unexpectedly) found out a week and a half ago that I am pregnant again. Hcg rising appropriately, progesterone right on target, egg sac with yolk verified in the uterus, and a follow up next week to look for a heartbeat. First indicator again was a rash on my lips, had OB do a beta quant, and had a count of 35 with elevated progesterone. Quant is now around 40k, so barring craziness we'll see.
See if your doc can check your progesterone levels. Also (and I hate even saying this, but it is a practical matter) if this one doesn't happen, you are far along enough that there should be ample tissue to test for reasons as to why you are having a hard time. It is obviously not ideal (pretty much horrible to even think about), but it is possible that it could go a long way in diagnosing cause.
Re: Recurrent Pregnancy Loss - 15 consecutive
It's been a while since I've updated, but I'm trying really hard not to freak out right now.
Up to this point, my OB has been really optimistic. I had my 12 week ultrasound a week ago as part of the routine genetic screening and everything looked really good. I saw my OB for a regular appointment on Tuesday, and she checked on ultrasound again to be sure of a normal fetal heart rate; it looked good at 159 bpm.
Yesterday though, I started spotting- bright red, so fresh blood. Went to the ER, and they did another ultrasound. Baby was moving, and had a heart rate of 150 bpm. They diagnosed a threatened miscarriage and told me to follow up with OB.
Touched base with her today. The spotting is light, but still there. Now it is rust-colored instead of bright red, which my OB says is better than it still being bright red because it indicates old blood instead of continued bleeding. She is having me wait and watch while taking it easy.
I know spotting is normal for some people, but I feel so jumpy and on edge. The thought of getting this far just to maybe lose another pregnancy turns my stomach and nerves into knots, and I don't know what to do to reassure myself. It's driving me crazy.
It's a wait and watch situation for now because even at 13 weeks, there aren't really any kind of effective interventions. Mostly I'm just trying to take it easy and not overwork myself. Not much else I can do. :-/
I know it's been a while, but I wanted to go ahead and update this thread as I've gotten new information.
A week ago I had an anatomy ultrasound, and this baby girl looks fantastic; such a little fighter!
In the process of just trying to rule out potential issues and because the losses were never adequately explained, the maternal fetal medicine specialist opted to do some additional testing, including another full blood panel checking for vitamin deficiencies, and clotting disorders we may have missed, and an updated echocardiogram to reassess a heart defect.
In the process of the blood screening, it's been discovered that I have a rare genetic mutation known a PAI-1 4G/4G. The doctors now believe that this is what was causing recurrent losses.
To prevent 2nd trimester loss of the current pregnancy, tomorrow I will be starting with an injectable blood thinner (I believe Lovonox sp?). I will need to have a scheduled delivery and will have to stop the blood thinner a few days before that and resume after delivery for six weeks. Hopefully, the rest will go as planned.
I don't know what this means for future pregnancies, or if I will try. For now, it's a day-at-a-time kind of thing.
May I ask - had you had a regular clotting test before?
You are in my thoughts!
This actually isn't the first time I've been tested for clotting disorders. Two years ago my IB sent me to a hematologist to try to rule them out, and the tests that she ran had come out negative. This included looking for the more common APS and Lupus.
I don't think PAI-1 4G/4G was tested for, however, because it's pretty rare and there really hasn't been much research done with it as a result. I'm not sure if it's really included in standard clotting/immunoligial testing.
I had a follow up on Monday with the maternal fetal medicine specialist that was initially supposed to go over updated echo results as well as management for the PAI-1 4G/4G moving forward. It is standard practice for an ultrasound to be performed at all of these appointments just to track fetal growth and to monitor for any changes.
The tech told me when she started that it would only take a few minutes because it was a handful of measurements and that's it, but 10 minutes became 20 and 20 minutes became 45 with the tech refusing to say anything. She left, came back, took more images, then left again. The doctor came in, quietly took more images himself, and then told me that the baby is accumulating fluid in her abdominal cavity. Apparently this is called fetal ascites.
It is not good, but we don't know how bad it is until the doctor figures out the cause, or even if he does. Right now, we are testing for what feels like literally everything. They've completed genetic screening for a couple hundred mutations for me, and we are waiting for similar screening results from her to try to find any genetic disease indicating developmental abnormalities in the gi tract, and they are testing for any potential infections that could be the cause.
Right now, it is isolated, meaning there's only one pocket of fluid and only in the abdomen. If more fluid in different locations begin to accumulate, especially around the heart and/or lungs, then her odds of survival decrease dramatically and they'll change the diagnosis to fetal hydrops.
While the doctor tries to figure out what is happening, the treatment plan is to push steroid injections to force her lungs to mature as fast as is safely possible, and to just be prepared to deliver her if at any point she seems like her treatment plan is better outside than in.
Right now I'm 25w5d, so obviously, delivering is not ideal. I'm just really, really angry because I feel like given everything, I should have at least one pregnancy that isn't so complicated. I feel like, as moms, the one place that we can be sure is safe for our babies is inside, but now I feel like that's as big of a crap shoot as anywhere else.
I'm tired of worrying, but there's a neverending stream of things to worry about. I don't even know what I will do with myself if I got this far with her only to lose her now. It might actually break me. I just don't even know anymore.
We've been doing ultrasounds every week to make sure the fluid is manageable and for now, it seems to be reducing on it's own, which is good, but it does mean that no cause has been found, so if there is a bowel blockage or perforation, it'll need to be treated surgically after birth.
Right now, the goal is to get to 38 weeks for a scheduled induction and to continue to closely monitor her, and we'll deliver her early if the scores progresses into fetal hydrops.
Just a waiting game, unfortunately.
The cause of the fetal ascites was never determined; over the course of about a month, it very slowly disapated and resolved itself. The maternal fetal specialist said that this happens sometimes and that in those cases, a cause is never determined even after delivery.
Since that point, however, there have been multiple other complications that seem to have a completely indeterminable cause.
Several weeks ago at the grocery store with my husband, the breathing and fatigue issues I'd had for weeks (dismissed as "normal pregnancy stuff") became so bad that my husband left the cart and drove me to the hospital because I almost fainted. At the hospital, the baby seemed fine, but my resting heart rate kept jumping from 85 to 130 bpm despite me just lying on a gourney. They ran a CBC which determined that my hemoglobin was at 8.2 and hematocrit was ar 28%, so severely anemic (frame of reference: the standard for a blood transfusion up until recently was hemoglobin at <10 and hematocrit at <30%). The hospital looked for an internal bleed, but was unable to find one. I was sent home with instructions to return if I felt worse and to follow up with my hematologist asap.
I saw my hematologist the following week; I almost passed it between the parking lot and the building, but was moderately okay in the waiting area. However, walking from the waiting area to the exam room, I lost consciousness and came to surrounded by nurses and doctors in their chemo infusion area while they were drawing for another CBC. Those results came back within 40 minutes with "critically low" hemoglobin of 7.8 and hematocrit at 24.6%.
Hematologist refused to let me leave without immediately beginning an iron infusion protocol, so at this point, I've been going in for weekly and sometimes biweekly iron infusions.
The first week after getting an infusion, my weight shot up by 12 pounds, my resting heart rate is now consistently over 100 bpm and will peak randomly at about 140, and I have breathing issues. The MF specialist can't figure out what is happening; despite my blood pressure not being "classically high" he tested my anyway, and those labs were fine. He ran another CBC and in three weeks, my hemoglobin is only back up to 8.0 and hematocrit is ar 26.7%, but still no evidence of a bleed. My cardiologist believes that the cardiac episodes are related. To the anemia, so he can't treat it. My MF specialist says, "Something is going on and we need to get to the bottom of it, but I have no idea what to look for because it seems like anemia not caused by iron deficiency, but you don't have the genetic issues known. To cause it," so he and my hematologist are discussing moving from iron infusions to straight up blood infusions which, apparently, can do weird things to the placenta and also can affect future pregnancies. My OB is at a complete loss and feels like this is out of her league.
The bottom line is that the whole team of doctors feels that these issues would all resolve by delivering early, but at the same time, they are all afraid to deliver because the simultaneous risks of the PAI-1 4G/4G clotting disorder increasing stroke risk, and the fact that I don't actually have the blood volume to safely deliver even nothing goes wrong.
I have an appointment with each specialist this week and they are working together to try to figure out what to do. They have me continuing lovenox injections and iron infusions while they work on it, but have also told me to talk to family about potentially donating blood directly to reduce transfusion risks if we have to go that route. I'll be 35 weeks tomorrow; initially they were going to induce at 38, now they are looking at the latest 37 weeks, or sooner depending on symptoms and what they figure out.
My husband is really scared that it may come down to me having to choose between my self or the baby, and he's made his preference for me to pick myself pretty clear.
But honestly, I don't know. Given how many I've already lost, I really don't know how I would go about trying to figure it out. It is definitely not the same as consenting to terminating an ectopic pregnancy, and I really don't know,what I'll do if my doctors can't come up with something.
I hope they're able to come up with a plan, and hopefully figure out what exactly is going on. Is it maybe something to do with bone marrow? Sorry, I don't know a whole lot about blood disorders, but that is all very worrisome.
As of my last post, they thought I was severely anemic, and the choice with that was that getting a blood transfusion can affect the placenta, or there's a risk of me or the baby rejecting it. They thought at that time that delivering her would resolve the anemia and not put her at risk of the complications, but I am also anemic that they don't feel that I have enough blood to safely deliver. So the options at that time was to deliver with no transfusion and very little risk to her but substantial risk to me, or getting a transfusion and delivering her after, which substantially reduces my risk and increases hers.
In the process of assessing the safety of a blood transfusion, they were trying to assess fluid retention because I put on twelve pounds in a week after gaining slowly and steadily throughout the pregnancy. Fluid overload is a large risk in transfusions, and can lead to heart failure.
What they found is that I can't get a transfusion because what is causing the anemia is the early stage of congestive heart failure, and that I have fluid developing in my lungs already (pulmonary edema).
What I know is that right now, the baby looks good. If they could safely deliver her now, they probably would, they just aren't sure I can tolerate it. She's over 6 pounds, her practice breathing based on her diaphragm movement and fluid movement in her nose is solid; she likely wouldn't even need the NICU.
What I don't know is what the doctors want to do about delivery at this point. I hope to know more next week.
I intend to take the epidural. For the children I had before all of the losses, I really feel that the epidural allowed me to rest before I had o get down to pushing, so I wasn't so tired. May not be an option this time because of the clotting disorder, it just depends on if delivery is scheduled or not. They can't give you an epidural if you had lovenox ithin 24 hours because it can cause an embolism in your spine. Scheduled they just had me stop early, and I'm hoping that's how we go.
Right now the plan is to deliver at the 37 week mark, on Wednesday. They are bringing me in Tuesday night for cervical ripening, fetal monitoring, and specialized cardiac monitoring.
My hematologist is having me in tomorrow morning to get one last iron infusion in under the wire. They haven't been helping a ton, but a little boost is better than nothing (in five weeks on infusions, I've gone from 7.8 to 8.9 for my hemoglobin count, still well below the 12.0 they want, and the 10.0 they hoped for). They'll check my blood counts before we start and regularly during labor to make sure there's no missed hemorrhage anywhere.
My heart has been doing okay-ish, but the tachycardia is still present, and there is still a build up of fluid in my lungs that hasn't cleared out due to the blood collecting there.
My OB's plan is to induce slowly to reduce the risk of uterine rupture and hyperstimulation, and to have a couple of units of blood ordered and ready on standby if bleeding becomes an issue. Vaginal delivery is preferred over c-section because generally it's half the blood loss, and luckily, this little girl is in a good position for it.
I won't be able to do a ton of moving around because of all the constant/various types of monitoring, so I will likely get the epidural early and let her labor down on her own over time with very small doses of pitocin so I can make sure I'm fairly rested when the hard work starts.
Her weight and her practice breathing are excellent; really, she's in really good shape.
The longer this goes on, the more I'm inclined to believe that the previous losses had to be due to undiagnosed blood issues, especially given that the PAI-1 4G/4G diagnosis wasn't discovered until this pregnancy.
I don't think I will be able to do this again and live through it. Getting this far has been a level of exhaustion that I can't describe because it feels like it exudes from my bones.
I am incredibly thankful for our Impossible Girl, and I have no regrets about continuing to try after so much discouragement, but I think she will be it for the sake of my own health and the wellbeing of my family.
I have always said and genuinely believe that it's up to each woman going through recurrent pregnancy loss to decide when is enough, and I can honestly say I've finally hit my own threshold. I'm terrified at the thought of ever doing this again.
Anyway, I'll try to update you guys later this week when our little raging badass is here and okay. Thank you so much for keeping me in your thoughts.
Labor and delivery went well, very well, actually. From Monday morning until I was admitted Tuesday night, I was contracting every 1-2 minutes on my own, but it wasn't causing any dilation or defacement. On Tuesday night they gave me a dose of cytotec, which moved the contractions along overnight, but by morning we were only at 2 centimeters, but throughout the night, the contractions were too close together (still 1-2 minutes apart) and they didn't want to hyperstimulate anything.
We started with a low dose of pitocin at 8am along with the OB breaking my waters, and after that, things moved very quickly. I pushed for less than a minute when it came time, and there were really no complications.
Our little girl was born at 11:49 am and was 7 pounds even, 20 inches long.
I didn't need a transfusion and my heart looks pretty good. My anemia is etting better every day, and the fluid in my lungs is starting to clear out. I've restarted the lovenox to avoid stroke during postpartum recovery, and that seems like it's going okay.
As far as our DD, she has a heart murmur with will require a complete echo in a few months, she's a bit jaundiced (not badly though), and she's failed her first two hearing tests. She will be tested for that again next week.
All of that notwithstanding, she is perfect and gorgeous and has already brought us a great deal of happiness. I think after this many losses, you really stop taking babies for granted.
I will leave this thread here, I think, because I want to believe that maybe what I did lose and eventually gained will bring other women hope with their own losses, but especially recurrent loss.
At the end of the day it's up to individuals to decide when they are done and when they want to keep going, and unfortunately, they will be given advice on this matter that is unsolicited and unwanted. Take it with a grain of salt and listen to your body and your gut above the advice of others.
For myself, I'll still check the board to offer advice, but for me, I think I'll put this thread to bed. Thank you all so much for you genourous support and keeping me in your thoughts. You are all awesome, and I am so thankful to have found you.
So, if you've been on progesterone the whole time, maintaining a constant level, I don't think the hives are necessarily related because they would have picked up during the initial increase in progesterone. If the hives are occurring with a noted increase in progesterone levels, then it's more likely that it is an allergic reaction and in that case, a steroid might be helpful.
Have you carried any pregnancies to term?
It's the chicken or the egg issue. If the pregnancy is abnormal and that's why progesterone is low, supplementing it won't fix it. For my losses, and especially ectopics, the progesterone was never good, but for the one that worked out, it was perfect.
I currently have an extra data point because we (very unexpectedly) found out a week and a half ago that I am pregnant again. Hcg rising appropriately, progesterone right on target, egg sac with yolk verified in the uterus, and a follow up next week to look for a heartbeat. First indicator again was a rash on my lips, had OB do a beta quant, and had a count of 35 with elevated progesterone. Quant is now around 40k, so barring craziness we'll see.
See if your doc can check your progesterone levels. Also (and I hate even saying this, but it is a practical matter) if this one doesn't happen, you are far along enough that there should be ample tissue to test for reasons as to why you are having a hard time. It is obviously not ideal (pretty much horrible to even think about), but it is possible that it could go a long way in diagnosing cause.
Good luck, I'm rooting for you.