Wednesday, March 30, 2011
But is it even possible to have a funeral home collect the body of a 'miscarriage' (assuming I deliver prior to 20 weeks)? Did those of you out there who delivered 'a miscarriage' have your baby cremated? Were you able to get the cremains back? Did you take photos? I know NILMDTS doesn't do photos before 20 weeks gestation so I'm wondering if we should prepare by ensuring our own camera is ready if in fact I go into labour within the next short while. The few things that I have of Aidan's are so precious to me, and I'm trying to figure out how to preserve anything of Acorn's, given that he may be 'younger', less developed and therefore less 'deserving' of memory preservation in the eyes of medical personnel who eventually deal with us.
I feel somehow like it would be a disservice to Acorn not to do the things for him that I did for his brother. For Aidan we got a pretty wooden urn and a silver necklace with his ashes. It wasn't cheap, but since we didn't have a service or a burial I felt those were the things we did to remember and honour his short life. I cannot imagine not doing it for Acorn if (when?) he dies. I'm trying to be a fair mommy to both my children, even though neither of them really cares.
Any help from moms who have had a 'late miscarriage'? Thanks in advance.
Tuesday, March 29, 2011
When we walked in the door to see him he was reviewing my chart. He asked how I was and I answered "devastated, how are you". He didn't answer, but launched right into my 16 week blood work results that they had drawn just over a week ago. My AFP (alpha fetoprotein levels, also known as the spina bifida marker) were extremely elevated, giving us a 1 in 5 risk of spina bifida. From my last pregnancy, and research on the Internet, I know that these levels can also be increased when something is wrong with the placenta or amniotic sac, so I questioned "could that have anything to do with my water breaking, again?"
He looked at me and asked "Your water broke??! When did this happen?"
He obviously hadn't gotten the memo. It was almost comical.
Here he thought I was devastated because I had somehow found out my blood work results and was afraid my baby had a 1 in 5 shot of having spina bifida (with an 80% chance of NOT having it). HA HA HA. No, no, no Dr. S. I'm devastated because my kid has a ridiculously low chance of being born alive and/or able to survive, and even if he (or she, although I'm convinced it's a he so we'll just go with that now shall we) does live, we'll be in the NICU forever with all of those potential complications. Plus every moment I remain pregnant I'm at a high risk of contracting a potentially deadly infection which will not only most certainly kill my baby, but places my own weakened heart at high risk of no longer being able to function, possibly also killing me.
Oh and did I mention AGAIN...cuz oh yeah, we did this LAST YEAR.
Honestly ONLY having 1 in 5 risk of spina bifidia with no other problems would considerably brighten my day.
It only got darker from this point.
He reiterated that placenta complications were not known to reoccur, but admitted that since it seems to now have happened again, it puts more weight on the genetic/some cause other than just random bad luck pile. My thrombophilia (blood clotting factor) panel was checked last time and found to be fine, although when I'm not pregnant again we might want to redo that test. He added very little else to the small pile of information that we have so far, but assured me it was NOT an incompetent cervix. He felt that there was NO WAY my cervix was the culprit despite the recurrent pPROM. He states that the way in which my membranes rupture and then I go days (in Aidan's case literally months) without delivering was not typical of an incompetent cervix. I was super disappointed with that as I wanted something, ANYTHING, to be fixable or treatable or at fault. Anything other than an unknown.
We were immediately sent us for an ultrasound to check for fluid volumes. Even to the untrained eye the scan was so different than it was just over a week ago. It was heart breaking to see our poor little Acorn all scrunched up, when just over a week ago he was bouncing and kicking in his little womb room. And it was immediately evident that the placenta looked very much like Aidan's with clots throughout. I was measured to have very, very little fluid termed "oligohydramnious". The tech found one 3cm x 2.2cm pocket of fluid. I'm not even sure if this translates into an AFI for all you other pPROM moms out there. I did remember to ask for a picture and what they handed me is so grainy and so without black you can barely tell it's a baby. Doubtful if they could even scan for spina bifida as you can barely see the baby's outline.
At this point we are waiting until next Thursday when I'll have a follow up ultrasound to see if any 'significant' fluid has built up (sadly, doubtful), and see Dr. K. the placenta specialist that we all know and love, to find out if he has any fun facts to add to our little pile of knowledge. Then we will, of course, be counselled by my OB to terminate the pregnancy and 'try again' if we so wish, hoping for a better outcome.
I don't even have a closing statement that adequately sums up how absolutely depressing and devastating this is. Insert something poetically bleak here.
Saturday, March 26, 2011
Until it does.
This rupture feels like it was preventable.
We went to the doctor's almost 3 weeks ago. I complained of vaginal irritation, and increased (lightly bloody) vaginal discharge. He said it likely wasn't an infection. I even made them take a swab which came back 'negative' for infection...
...but what if they had put me on antibiotics prophylatically?
Then, over a week after that appointment, I mentioned to my doctor AGAIN that I was still having the same bleeding and irritation...and once again it was dismissed as 'a pregnancy thing'. My cervix was determined at the ultrasound that day to be 3.2 cm in length. I asked if that was normal. He said it was. But what if I have a dynamic cervix? What if they'd checked my cervix via vaginal ultrasound rather than abdominal? Would they have seen something abnormal? The vaginal irritation always felt worse when I was up moving around. If you could check my cervix in a different position other than laying down, would they have noticed it was shorter or funnelling?
Why was my history blown off as a 'fluke'? I had pPROM in my last pregnancy. No matter WHAT the condition my placenta was in, that's a pretty rare thing to have at 13 weeks pregnant. And what if the membrane rupture actually helped to CAUSE the damage to my placenta last time? What if the loss of fluid came first? I didn't realize last time that my membranes had even ruptured so it was not checked right away. What if all the damage to the placenta came (mostly) afterwards? It's the old chicken or the egg question. What if I'd had a cerclage placed this time? Would I be right now making a birthday celebration dinner for my mom (my original plan for this weekend)? Would I have avoided any bleeding at ALL in this pregnancy?
Instead I'm sitting here in bed, trying to avoid moving to avoid any leaking. I want to cry and throw things and scream, but I have to lie as still as possible. I'm desperately trying to feel if Acorn is still moving. I'm afraid to use my doppler and hear silence...
...and yet at least that would be a resolution.
For any of you who have been on bed rest with an uncertain outcome you'll know how futile it feels. Each day feels like a month. Every day is soul-sucking. I'm technically still pregnant but it no longer contains any joy. I get to lay here, all day, afraid that I'll spike a fever and get an infection that will hurt my heart, or that the baby will die. Or that I'll keep going with the pregnancy and the baby will be born with the inability to breathe and die anyway. Or that we'll make it to the NICU and the baby will have breathing difficulties, get NEC, have brain hemorrhages etc etc. This was the EXACT thing I was dreading and prayed would not happen again. Another pregnancy loss would have been devastating no matter what but that it is happening in the same fashion makes it a thousand times worse.
I'm sure my doctor will recommend termination and a part of me wants to go with that. I feel like a bad mom even admitting that, but I'm not sure I have it in me to do days, weeks (months?) of bed rest only to have another dead baby. It's physically, mentally, emotionally, not to mention financially draining and just gets you more attached to a baby that doesn't have a good chance of coming home safely. Plus it puts me at risk of infection, and blood clots. I understand where the doctors are coming from when they tell you to 'cut your losses' so to speak. I SO just wanted an average pregnancy...not another high wire tight rope act.
But how can I give up on Acorn? I love this baby as much as I love Aidan and I want to believe it's possible for him or her to be okay and come home with us. I felt like we gave Aidan every shot we could to live, so how could I deny the same chance to Acorn? Plus you never know when you just might get a 'miracle' (as much as I hate using that word). There are stories you read about pPROM where women have lasted weeks or months with ruptured membranes and delivered babies that eventually come home.
I don't know what to do. I wish I wasn't in this position.
Friday, March 25, 2011
My membranes ruptured yesterday. It was confirmed as amniotic fluid in Emerg.
We are devastated. Our families are devastated. Our friends and work colleagues are all so sorry for us.
I cannot believe this happened. Again.
I am at home. On bed rest. Again. I am leaking fluid every time I move too quickly or get up to pee. Again. My husband is doing everything for me and we are just laying around the house trying to come to grips with the fact that once AGAIN we are going to have to make hard decisions about the future of our unborn child. Induce to reduce infection risk? Continue on mind, body and spirit numbing bed rest in the hopes that maybe I'll make it to the point where Acorn MIGHT have a chance? Continue with this pregnancy in hopes of at least getting to hold our baby alive again, get to see his or her face and marvel (once again) how cute and adorable he or she is, even in death. I'm 17 weeks pregnant and there is (once again) little to no hope that Acorn is going to be born healthy and/or alive.
How does one recover from this? I've read the postings and the blogs of couples who have had to face more than one tragedy of this magnitude and I never knew quite how they scraped themselves back up off the ground. There seems little point. If what you create out of love and hope and dreams for the future is doomed to die, what keeps people going? How can my body fail so spectacularly a second time?
We are crushed under the weight of this.
I miss Acorn already.
I have only questions and no one out in blog land can answer them.
Tuesday, March 22, 2011
After having no bleeding all day on Saturday (Yeah! Maybe it's finally gone. Maybe I can stop worrying! Maybe I can just relax!)...it came back with a vengeance on Sunday, Monday and then again today. When I woke up and passed what looked like much thicker, redder mucous than usual, I started to cry, phoned in to work to say I wasn't coming in, and then called my husband to take me to Emerg.
The emergency room staff was excellent. I was in and out of there in under two hours. Honestly it was quicker than some family doctor visits I've had. The doctor took another vaginal swab (just in case, although he also assured me it likely wasn't an infection, plus hey, what are you gonna do if it grows Group B strep? Answer: nothing except give me IV antibiotics when I deliver!) and took a quick peek on ultrasound assuring me that my cervix was closed and he couldn't see any big blood clots. He did tell me that my placenta is 'low lying, right next to your cervix', but didn't comment on the significance of this. I suppose I could have some minor bleeding from the edge of my placenta, but I'm really hoping it's just some seriously angry cervical cells that are pissed off due to hormonal levels and extra blood flow. Just as long as they stay nice and closed, that's all I'm asking.
It always kind of makes me laugh when they do these 'quick peek' ultrasounds that they start showing my husband and I the baby stating "oh look, see there is the baby's head, and the baby's heart...see there is the baby's heart beating!!". Meanwhile what I REALLY want them to focus on is: How's my cervix? Do you see a subchorionic hemorrhage? Does my placenta look okay? I mean, duh, obviously it TOTALLY matters that the heart is beating but I was already pretty sure about Acorn's being okay since I can feel him/her moving. Plus I can hear the heartbeat at home on my doppler. I feel like saying "I came to the emergency room for info I don't already know...like where the HELL I'm bleeding from???!!!"
So once again we left mildly reassured but with the warning, "it's probably nothing, but come back if it gets worse". I'm sure they think I'm the crazy anxious pregnancy after loss mom (I'm sure the staff just LOVE us PALMs), but I think I would have been able to remain fairly calm this pregnancy if I wasn't bleeding. As I've noted before, everyone thinks their pregnancy is going to go bad in the same way the next time. That I've having bleeding in my second pregnancy, which was the same initial cause for concern in my first pregnancy OBVIOUSLY MAKES ME ANXIOUS. Plus all the pregnancy books say "if you're bleeding don't pass go, don't collect $200, go see your doctor". See I'm being good! I'm going by what the book said! The books don't mention what to do when your doctor doesn't know what's going on.
I also got a note saying that I'll need to be off work for the rest of the week. This too makes me anxious because this is exactly what happened at the beginning of Aidan's pregnancy. "Oh yes, you have a subchorionic hemorrhage. Yes, better stay home and relax for a few days..." Which turned into 12 weeks of bed rest and a dead baby. Still, I'd rather be a home right now. I'm too anxious to go to work and have to deal with other people's medical stress.
Also, in other WTF news, my husband was in a (minor) car accident on his way home to pick me up to go to the hospital. The accident wasn't at all my husband's fault, and no one was hurt, but seriously, poor timing much?
I keep reminding myself "it could be worse Emily...you know how much worse it can be. This is nothing. Baby is fine. Bleeding is (probably) nothing. Husband is fine. Car can be fixed. No one has died."
Pleasepleaseplease, just let it stay that way.
Friday, March 18, 2011
We went for our first placental ultrasound yesterday which did not really serve to reassure us. The report that was handed to us at the end showed that there were areas within the placenta that were referred to as "echogenic"(calcifications?) and "echolucent" (possible bleeding?). However, the report did state that the baby appeared active and normal, that blood flow to the placenta from the uterine arteries was normal and that my fluid levels were normal. All good. The report was handed to us by the lady at the front desk at the ultrasound place and then we were told to come back after lunch to meet with my OB.
Over lunch I had my husband googling the shit out of his iphone, trying to figure out how bad echolucent and echogenic areas are within the placenta at 16 weeks. Finally we get to meet with my OB and he seems unconcerned by the ultrasound. He states that placental ultrasounds are usually done at 20-22 weeks when they have more knowledge of what predicts a good or bad outcome based on the placenta. He was happy that the baby appeared to be growing and had a good fluid index. That he seemed unconcerned is good I suppose, but I was hoping for more conclusive info out of this scan. The PLACENTA SPECIALIST told us to have an ultrasound done at 16 weeks during our next pregnancy. Why would he tell us that if there was no value to the information the ultrasound provided? All it did was give us *just enough* info to worry over the next few weeks until the anatomy ultrasound and further placental studies can be done. Awesome.
And, as usual my OB reminded us that "well, there is nothing we can do about it at this point anyway". I know he means "don't worry"...but his phrasing is not very comforting. This morning I e-mailed the placental specialist who was the one who suggested that we get the 16 week ultrasound in the first place, and asked him if he could review the results. I immediately got an form e-mail back stating he was out of the office until March 28th.
But, we did get some reassurance about my heart. Yesterday after meeting with the OB, it was on to the next appointment with my cardiologist (who is a woman) and she gave me a much better sense of reassurance, at least about my heart. "I think you'll do just fine" she says. "You do have a bit of reduced pumping power in your left ventricle, but I think you have enough reserve to make it through this pregnancy". When I asked her about being off work she said the timing is up to me, and whenever I start to feel like it's too much, she'll take me off. She was also sensitive to the fact that it's expensive to be off, and respected the fact that I would like not to be off too early if I can help it. I like her a lot. I wish she could be my OB.
So, while this visit provided some reassurance about my heart, with the continued spotting and possible changes? irregularities? abnormalities? within my placenta, I'm left feeling overwhelmed and afraid. I cried yesterday in front of the nurse who was doing my blood pressure saying "I can't do it again!!" She tried to support me and give me a hug, while stating that my blood pressure was 160/100 (no shit, I'm anxious and upset and crying!).
On a more positive note, we did get a few glimpses of Acorn. He or she looked unconcerned about anything, kicking and waving his/her hands around. It was SO nice to see fluid around the baby at this point (something I was lacking from 14 weeks on last time). It was a little surprising to see that the head measurement was 15 weeks 4 days (fairly consistent with my estimation that we were 15 weeks 5 days), but the femer was only measuring 15 weeks 0 days. I'm trying to remain zen about that, and not worry that our baby has short legs. I asked about the sex, but they were unwilling to say at this point. I have been feeling pretty consistent movement this past week that is obviously baby (rather than wondering is that baby or gas?) It's awesome because I hardly ever felt Aidan move. He didn't have enough room to get a good wined up to kick very hard.
Anyway, just laying it all out there in blog land helps me and makes me not feel so alone. I wish I had nothing to be nervous about. I wish that this spotting would stop. I wish I felt confident and happy and non-stressed. I wish the placenta specialist was around so I could at least get his opinion on the matter. I wish for reassurance. I wish my baby and my heart and my placenta safety and health.
I wish for peace.
Any good movies or books anyone can recommend to pass the time away? I'm big into distractions these days! Also, if anyone has experienced cervical irritation and bleeding during pregnancy I'd be happy to hear about it. Just sayin'.
Tuesday, March 8, 2011
On Saturday I noticed what looked like 'yellowy/brown, possibly bordering on orangey? cervical mucous'. I immediately of course, suspected blood, but hoped that maybe I just wasn't drinking enough water and I might be dehydrated and therefore the CM might be a little thicker and darker than normal? Sounds plausible right? So Saturday goes by, Sunday arrives, and even with drinking water, no change. Monday I'm at work and trying not to think about it, but when I visit the bathroom I decide to take one of the urine dip sticks. You know the ones...they look like this:
Anyway, one of those little squares (4 away from the blue square at the top) tests for the presence or absence of blood in fluid. And, of course the square immediately goes DARK GREEN when I test my mucous. Positive for blood.
So, I'm at work, and will be for another 3 hours, but I decide to phone the high risk OB on call. I finally get a call back and it's Dr. R., the same guy who gave us the original bad news about Aidan. He remembers me. Oh joy.
He advises me that while bleeding is never a 'great' sign, it doesn't always mean anything bad is happening and, while on the phone he calls up the photos from my 12 week ultrasound. He confirms the images look good and that I should just keep an eye on it over the next few days. If the bleeding continues I should call the nurse at my doctor's office and try to get an appointment.
This reassurance is fleeting, however...so I decide the next morning I'm calling to make an appointment. I got to see my OB at 2:30pm this afternoon...well that was our appointment time...I actually got to see him at around 4pm.
I asked them do a Pap test and vaginal C&S (culture) just in case I have an infection, but the nurse doing the test said that she could see a small 'blistery' type thing right on my cervix. She also said the area looked a little 'raw'. (I have no idea the reasons for this...I have not done anything to piss my cervix off lately, including intercourse. Of course, maybe that's why my cervix is upset?) They put it down to a 'pregnancy thing'. Bonus was that we also got a 'quick peek' on the portable ultrasound machine to make sure there was no blood coming from anywhere else. The OB spent some time pointing out the arms, legs, face, heart, nose, eyes etc. and stated he didn't see any blood coming from anywhere. My husband, of course, got a better view because they never seem to be able to tilt that ultrasound screen properly so that I, as the person lying down, can see. So I'll have to take my husband's word on it.
All in all, I'm glad we went. Even though it meant my husband missing a day of work (for which he doesn't get paid) and me having to take a personal day (for which I do).
So, total for today:
Parking: $12. Tea & Coffee while we were waiting: $3. Fast-food dinner afterwards because we were starving: $16. Lost wages: quite a bit.
Piece of mind so I can sleep tonight: PRICELESS!!!!!!!!!!
Did you have any scares during your pregnancy, either the one(s) that didn't work out or one(s) that did? What was your decision making process about either seeking medical advice or not?
Saturday, March 5, 2011
Friday, March 4, 2011
It's very weird to watch milestones pass in this pregnancy that were so very dramatic with Aidan's.
This time, I'm up. Not on bed rest. Working, planning to work for many more weeks (*fingers crossed*, our bank account would appreciate it!!). Taking the subway not worried about being alone and starting to gush blood at some random stop between my house and downtown (so far, so good). Making plans for at least a few weeks into the future to do things like go out for dinner, go to the dentist, go to a movie with a friend, without really thinking too much about "but what if something bad happens before then and I can't go?" My husband is even planning to leave town for an overnight in two weeks. When I was pregnant with Aidan I was on bed rest and we didn't plan much beyond the end of the day. With Aidan I could have been rushing to the hospital at any moment. It is only now, pregnant for a second time with Acorn, that I can really appreciate how abnormal my first pregnancy really was. I would do it again in a heart beat to save Aidan. But it is nice this time not feeling so....so.... Abnormal? Compromised? Fearful? All of the above.
I went to my family doctor today. I hadn't seen her since she got my beta test results back in December, so she didn't know exactly what to say when she entered the exam room. Finally she asked, "So...are you pregnant?" Yep. I left the office with my usual prescription for the meds I take, as well as a command from her to increase my vitamin D intake, as per new research that has come out for Vitamin D in pregnancy. That's it. No blood work to check for hormone levels. No emergency ultrasounds to see if we still have a live one in there. Nothing out of the ordinary.
It was heaven.
But damn how it makes me sad for Aidan. My poor little boy, who at 13 weeks and 5 days likely lost his chance to survive. All his fluid. All gone. And his mommy didn't even know it.
I'm a little ashamed to admit it, but I do not miss the fear and anxiety that was his pregnancy.
I miss only him. Every day.