We called my RE at the beginning of July to see what type of testing we should be doing so that we can find answers related to our recurrent losses. We really can't afford IVF, but we want as much information as we can get and we know we need a lot of tests done.
Last February my OBGYN had me go in for a slew of blood tests that are standard for Recurrent Pregnancy Loss (RPL) and everything came back normal...no mutations or thrombophilias, etc. So that's good.
In June, after our third miscarriage, the OB had us get our karyotypes done, and everything came back chromosomally normal for us. Also very good.
After consulting the RE, he lined us up for a bunch of tests and had us do all the bloodwork for a "Fertility Panel." Everything came back fine...so again, very good.
Then today I had a hysteroscopy, ultrasound, and a mock transfer. I had no idea they were going to do a mock transfer, so that put me on edge, but in retrospect I'm glad they did it because I think it gave me the first glimmer of hope since we lost our twins in May.
I was also terribly nervous about possibly having Asherman's Syndrome (uterine scarring) following the last D & C to remove the placental tissue because I have had such scant periods since then (which is a symptom of Asherman's). I feared the worst, but thanks be to God my uterus looked fine. The RE saw no signs of scarring anywhere.
The RE removed the camera and did the mock transfer immediately afterward and it went very smoothly and quickly. I had some cramping right afterward and throughout the day, along with spotting, but it has been primarily uncomfortable, not painful. My understanding is that the mock transfer basically measures the uterus so that they know what tools to use and where to place the embryos in the future (should we ever get to that point).
They also did an ultrasound and measured my uterine lining and it looked "fine" for Cycle Day 12 at 9mm. My right ovary had 2 follicles measuring 16 & 17 mm, so I should be ovulating in the next few days. I'm very pleased that the lining looked good since he seemed to indicate that was essential.
The next test on my list is to get my Day 3 FSH and estradiol checked during my next cycle. My husband needs to get his sperm analyzed with a basic SA and have the DNA fragmentation checked with a SCSA. Our insurance covers basic diagnostics but nothing else fertility related, so it is adding up quickly, even in this preliminary phase of seeking answers.
All in all, everything has checked out great/ideal so far. We do not have any definite answers yet, but I think the next 2 tests will be telling. At least we are getting more information and ruling out possible causes for our losses, and that feels good. Knowledge is power.
Wednesday, July 21, 2010
Monday, July 12, 2010
The Burial
Since we lost twin babies, we went ahead and made a burial box for both of them, even though we only had the body of one of the twins to bury. Our other little one was too tiny to identify because he/she died so early on. My husband and I decided to do this ceremony by ourselves and picked a beautiful Maple tree in the canyon near our home for the burial site. We walked to site, dug a small hole, blessed it with prayers, laid the burial box inside, took some photos, and then prayed through a wonderful liturgy (miscarriage memorial) produced by the Episcopal Church. The text of that service can be found here: http://www.episcopalchicago.org/about/about-admin/documents/HannahsHopesRachelsTears.pdf .
Here's a prayer from it:
We commend to your mercy, O God, our child N., that death may be for her the gate of life and peace with you. At your heavenly banquet, may we rejoice with her and all your saints to see you face to face, one holy and undivided Trinity in glory everlasting. Amen.
We commend to your mercy, O God, our child N., that death may be for her the gate of life and peace with you. At your heavenly banquet, may we rejoice with her and all your saints to see you face to face, one holy and undivided Trinity in glory everlasting. Amen.
We cried quite a lot and hugged. Finally we placed the soil over our little one's box and placed flowers and rocks (a Jewish tradition) on the burial site, one rock for each living family member (3). It gave me a sense of having honored my babies the best way that I could with a sacred rite.
Now I blow a kiss and remind my little ones how much I love and miss them every time I walk past that precious burial site. Tears often flow, bidden or unbidden.
D & C Following Misoprostol
By way of update, the Misoprostol failed to evacuate all of the fetal tissue after my miscarriage. This was discovered at my 12 day post-treatment ultrasound when most of the placenta was found. It is my OBGYN and RE's opinion that Misoprostol works well for very early miscarriages or chemical pregnancies, but for later or "bigger" pregnancies (6 weeks and over), it is not as effective. I should have been close to 9 weeks along by the time we discovered the fetal heart beat had stopped. Sadly, I had to schedule yet another D & C to evacuate my uterus because leaving the left over tissue could lead to a serious internal infection. In fact, I was still losing portions of the placenta several days after the D & C.
Unfortunately, I have been having symptoms of Asherman's Syndrome (scarring of the uterus) since the D & C and am very concerned that this last D & C has done damage which can impair fertility. This is more common than people realize after a D & C because the uterus is so fragile during and immediately after pregnancy. Often the scarring is caused by the tissue tearing away from the lining of the uterus and nothing more. My symptoms have included extremely scant bleeding/periods (especially in comparison to my normally very heavy periods) and uterine pain. I will be getting a hysteroscopy to have this checked into.
Unfortunately, I have been having symptoms of Asherman's Syndrome (scarring of the uterus) since the D & C and am very concerned that this last D & C has done damage which can impair fertility. This is more common than people realize after a D & C because the uterus is so fragile during and immediately after pregnancy. Often the scarring is caused by the tissue tearing away from the lining of the uterus and nothing more. My symptoms have included extremely scant bleeding/periods (especially in comparison to my normally very heavy periods) and uterine pain. I will be getting a hysteroscopy to have this checked into.
Tuesday, May 11, 2010
My Experience with Misoprostol (Cytotec)
This is graphic, so please don't read it if you're squeamish or young. It's really meant for women who are considering taking Misoprostol to induce labor for a missed miscarriage, which is what happened to me.
------------
My OB and RE wanted me to get another D & C but I just couldn't do it. Last time it was the right thing but this time I absolutely could not let anyone take my baby away from me to a lab to be disposed. I needed to see and hold my little one, tell her/him they are loved, and bury them on my own terms with prayers and a sense of a sacred ending. I also wanted to avoid any potential scarring of a second D & C.
I set up my room with candles, calming CD's, a heating pad, and plenty of disposable water proof sheets and Overnight pads in preparation for this. I do recommend those disposable water proof sheets (they can be found near the pads and Depends at the store). I waited until my husband was back from work and could be with me for the whole weekend in case anything went wrong and I needed to get to the hospital.
I prayed and then took four 200mg pills (800 mg) of Misoprostol vaginally at 1:30pm on Friday, hoping to miscarry that night. Preventively I took Advil and then later some Vicodin when some mild cramping started because I read it could get really intense. However, the cramping was light and I only started bleeding a few blood clots around 10:30pm after I took a walk to get things going. Then it stopped and nothing else happened. I slept the night and woke up to some bigger cramps and medium bleeding that again subsided in an hour. I realized the meds just weren't working and was stressed by this because I really wanted to avoid a D & C.
I had my husband get a second dose at the pharmacy and reinserted the same amount at 11am that morning (Saturday). NOTHING happened. I started to cry and get crazy by 7pm and decided to check my cervix. I felt in there and could feel all four of those pills completely intact, not having dissolved at all...no wonder they weren't working. I should have wet them first I guess, but instead I crushed them as much as I could with my fingers up inside me...very messy and unpleasant. I probably lost 1/2 a pill doing this.
However, by 7:30pm, the cramps started. I took Advil at 7:45pm. By 8pm the cramps were turning into contractions and I was bleeding and passing blood clots.
By 9:00pm the bleeding was out of control...I soaked through 6 HUGE overnight Always pads in an hour and was leaking all over the bed and my clothes with every contraction despite the pads. I took the Vicodin but it was too late. By 9:30pm I felt a very strong contraction, ran to the bathroom but pushed the gestational sac out on to my pad before I could make it to the toilet.
It was heart wrenching and amazing at the same time that I could clearly see our little 8 week baby in his/her amniotic sac floating inside the gestational sac/bag of waters....maybe just under an inch long. I cried and held him/her and placed everything in a container so that we could bury him/her.
After that I had one more large contraction and large blood clot came out and the cramps really susbisded. The heating pad was very helpful that night and I mostly felt relief that I had made it through the ordeal. I took a shower and cleaned up the bathroom because it honestly looked like a horror movie in there with all the blood. The Vicodin made me sleep and I went to bed. I passed some more clots at 4am with cramping and took more Vicodin.
Since then I've been bleeding with mild cramping but it was basically a short two hour labor once the meds worked. I have been extremely tired/fatigued since and crying a lot as I try to comprehend this tragic loss.
Tomorrow we hope to do the burial with flowers from the florist and a little black memory box I found. I personally would do the Misoprostol again with pain killers, but make sure they were dissolved/dissolving properly. This method is NOT for the faint hearted or those who are concerned about seeing a lot of blood...it is a VERY visceral experience.
I will go back for an ultrasound to see if everything passed...I am afraid of retained tissue which would mean a D & C, but hoping for the best.
------------
My OB and RE wanted me to get another D & C but I just couldn't do it. Last time it was the right thing but this time I absolutely could not let anyone take my baby away from me to a lab to be disposed. I needed to see and hold my little one, tell her/him they are loved, and bury them on my own terms with prayers and a sense of a sacred ending. I also wanted to avoid any potential scarring of a second D & C.
I set up my room with candles, calming CD's, a heating pad, and plenty of disposable water proof sheets and Overnight pads in preparation for this. I do recommend those disposable water proof sheets (they can be found near the pads and Depends at the store). I waited until my husband was back from work and could be with me for the whole weekend in case anything went wrong and I needed to get to the hospital.
I prayed and then took four 200mg pills (800 mg) of Misoprostol vaginally at 1:30pm on Friday, hoping to miscarry that night. Preventively I took Advil and then later some Vicodin when some mild cramping started because I read it could get really intense. However, the cramping was light and I only started bleeding a few blood clots around 10:30pm after I took a walk to get things going. Then it stopped and nothing else happened. I slept the night and woke up to some bigger cramps and medium bleeding that again subsided in an hour. I realized the meds just weren't working and was stressed by this because I really wanted to avoid a D & C.
I had my husband get a second dose at the pharmacy and reinserted the same amount at 11am that morning (Saturday). NOTHING happened. I started to cry and get crazy by 7pm and decided to check my cervix. I felt in there and could feel all four of those pills completely intact, not having dissolved at all...no wonder they weren't working. I should have wet them first I guess, but instead I crushed them as much as I could with my fingers up inside me...very messy and unpleasant. I probably lost 1/2 a pill doing this.
However, by 7:30pm, the cramps started. I took Advil at 7:45pm. By 8pm the cramps were turning into contractions and I was bleeding and passing blood clots.
By 9:00pm the bleeding was out of control...I soaked through 6 HUGE overnight Always pads in an hour and was leaking all over the bed and my clothes with every contraction despite the pads. I took the Vicodin but it was too late. By 9:30pm I felt a very strong contraction, ran to the bathroom but pushed the gestational sac out on to my pad before I could make it to the toilet.
It was heart wrenching and amazing at the same time that I could clearly see our little 8 week baby in his/her amniotic sac floating inside the gestational sac/bag of waters....maybe just under an inch long. I cried and held him/her and placed everything in a container so that we could bury him/her.
After that I had one more large contraction and large blood clot came out and the cramps really susbisded. The heating pad was very helpful that night and I mostly felt relief that I had made it through the ordeal. I took a shower and cleaned up the bathroom because it honestly looked like a horror movie in there with all the blood. The Vicodin made me sleep and I went to bed. I passed some more clots at 4am with cramping and took more Vicodin.
Since then I've been bleeding with mild cramping but it was basically a short two hour labor once the meds worked. I have been extremely tired/fatigued since and crying a lot as I try to comprehend this tragic loss.
Tomorrow we hope to do the burial with flowers from the florist and a little black memory box I found. I personally would do the Misoprostol again with pain killers, but make sure they were dissolved/dissolving properly. This method is NOT for the faint hearted or those who are concerned about seeing a lot of blood...it is a VERY visceral experience.
I will go back for an ultrasound to see if everything passed...I am afraid of retained tissue which would mean a D & C, but hoping for the best.
Friday, May 7, 2010
Tragedy Strikes Again
After our last great ultrasound I was at peace for several days. And then...once again, I felt like I was feeling a little bit "too good." My nausea had decreased. On the other hand, all my other symptoms were in full swing...sore breasts, bloating, fatigue. But maybe that was due to the progesterone supplements.
On the morning of our ultrasound at 8 weeks 5 days, I had a terrible sinking feeling. I started crying and telling my husband that this felt "too familiar"...it was the same time, the middle of the 8th week, that we had lost Annabelle and discovered her heart had stopped. It was again a Wednesday too and I felt no assurance from my body that things were okay. I was a nervous wreck, but I also wondered if I was simply having some kind of anniversary depression/angst. I kept imagining, preparing myself, hearing the RE say, "I don't see a heartbeat."
I picked myself up and we went to the RE's office and waited. The news all seemed to be good that day at the office and that gave me a lift, plus I was peeing frequently, and that was a good sign. I got up on the table and the RE inserted the vaginal wand and I waited and watched his face as he looked at the screen. (I couldn't see anything.) His face grew intense and his eyes squinted while his brows wrinkled. That didn't seem good. Then he asked me if I had been spotting...I knew that was really not good. "No" I stuttered. Finally he said, "I'm just not seeing a heart beat. Why don't we look together?" We both looked at the screen then and we saw no movement...nothing, just my little one looking a little bigger than the last time, very still. My heart was pounding out of my chest desperately hoping for something miraculous, but I knew that was the end. He finally said that his machine was not top quality and he thought we should either come back again in a few days to "be sure" or go to a hospital for a more thorough scan now. I opted to go to my OBYN's office for a confirmation scan then. The scan and news was bleak: our little one had died and measured only 7w5d, almost to the milimeter/day what Annabelle did. Surely it was another trisomy and again, very likely due to my husband's meds.
After talking to the doctor on call, I opted out of a D & C, although both he and the RE recommended it strongly. I realize in retrospect that while the procedure was very easy physically for me for the most part, I really disliked being in a public place for that event and having someone take my baby away dismembered to a lab just causes me pain and regret. I never got to see or hold her. And now I just needed to hold and pray over my little one and give him/her a proper burial with some kind of sanctity and honor.
So, this afternoon, I will be taking misoprostol to induce labor. I'm scared about what it will be like and I know the risks are serious if anything goes wrong. But I hope emotionally this will be the better route for me. I'll update later and describe my experience. Oh, Lord have mercy.
On the morning of our ultrasound at 8 weeks 5 days, I had a terrible sinking feeling. I started crying and telling my husband that this felt "too familiar"...it was the same time, the middle of the 8th week, that we had lost Annabelle and discovered her heart had stopped. It was again a Wednesday too and I felt no assurance from my body that things were okay. I was a nervous wreck, but I also wondered if I was simply having some kind of anniversary depression/angst. I kept imagining, preparing myself, hearing the RE say, "I don't see a heartbeat."
I picked myself up and we went to the RE's office and waited. The news all seemed to be good that day at the office and that gave me a lift, plus I was peeing frequently, and that was a good sign. I got up on the table and the RE inserted the vaginal wand and I waited and watched his face as he looked at the screen. (I couldn't see anything.) His face grew intense and his eyes squinted while his brows wrinkled. That didn't seem good. Then he asked me if I had been spotting...I knew that was really not good. "No" I stuttered. Finally he said, "I'm just not seeing a heart beat. Why don't we look together?" We both looked at the screen then and we saw no movement...nothing, just my little one looking a little bigger than the last time, very still. My heart was pounding out of my chest desperately hoping for something miraculous, but I knew that was the end. He finally said that his machine was not top quality and he thought we should either come back again in a few days to "be sure" or go to a hospital for a more thorough scan now. I opted to go to my OBYN's office for a confirmation scan then. The scan and news was bleak: our little one had died and measured only 7w5d, almost to the milimeter/day what Annabelle did. Surely it was another trisomy and again, very likely due to my husband's meds.
After talking to the doctor on call, I opted out of a D & C, although both he and the RE recommended it strongly. I realize in retrospect that while the procedure was very easy physically for me for the most part, I really disliked being in a public place for that event and having someone take my baby away dismembered to a lab just causes me pain and regret. I never got to see or hold her. And now I just needed to hold and pray over my little one and give him/her a proper burial with some kind of sanctity and honor.
So, this afternoon, I will be taking misoprostol to induce labor. I'm scared about what it will be like and I know the risks are serious if anything goes wrong. But I hope emotionally this will be the better route for me. I'll update later and describe my experience. Oh, Lord have mercy.
Wednesday, April 28, 2010
Ultrasounds!
So I'm finally out of beta purgatory! But it has been a rather rocky road getting there. I had a very, very brief in & out type of ultrasound at the RE's office last Wednesday at 6 weeks 5 days along. Basically, he quickly slipped the transvaginal ultrasound in, made sure there was a fetal pole and heart beat and was done. He took no measurements and said he was only interested in whether anything was happening in there or not. I was happy about the heart beat but worried because he said it looked like I was not as far along as I knew I was. He also said the heartbeat looked "pretty slow" which is not what I wanted to hear. The husband and I left the office feeling ambivalent. Then they took my progesterone levels and it had DROPPED from 23.6 to 16.7. That's when I started freaking out. They put me on vaginal progesterone suppositories (eww...losts of white powder) and I think that has helped, but again, this was not a good sign in my eyes. (And don't even ask me how long it took me to figure out how to use the applicator to insert the dang things!)
And then I woke up the next morning and ALL of my terrible nausea and constipation was completely gone. So I completely lost my mind. I panicked and cried all the way to the office. I know that feeling "not pregnant" and "fine" at about 7 weeks is a very, very bad sign. When I went to see my spiritual director later that day I even told her point blank that I was miscarrying. I had no doubt whatsoever. I was sure of this fact for a 3 full days and I continued to feel completely normal and not pregnant. It was so depressing and I felt like I was postponing the inevitable.
And then suddenly on Sunday morning I felt nauseated again...terribly. I was elated!! I was so beyond thrilled to be sick and it gave me a tiny ounce of hope again. I called the OB after the weekend and she wanted to do yet another beta given my disappearing symptoms. The results came back on Tuesday and it was all the way up to 60,812. Wow. I was hoping for just over 30,000, so my hope continued to rise. (Apparently my numbers are the average for a 9 week, not 7 week pregnancy.)
But the true test would be the second ultrasound and I knew it. The OB had me come in today for a "viability scan" (don't you love that clinical term?) where they basically do all the measurements of everything imagineable of the uterus, ovaries, sac, and baby. It was not until that moment that I felt the shackles of beta purgatory start to loosen. As she focused on the gestational sac we saw right there our tiny little baby bean with a very clear heart just beating away beautifully!! I squeezed my husband's shoulder tightly. It was better than I had hoped.
She checked the heart rate and it was a very strong 159 beats per minute. Little one is measuring only 2 days behind now as 7 weeks 3 days (I think I'm 7 weeks 5 days) but that's okay. The Crown-Rump length (CRL) was nearly 12 millimeters and that's right about average for this week.
Afterwards we met with the OBGYN and she let me know that they found a second gestational sac. (I wondered what that was on the screen.) Sadly, it is most likely the result of a twin that didn't make it...so a fraternal twin since it had its' own sac, which is the result of 2 different eggs being fertilized. She said that probably explained my big jump in symptoms that was followed by the big decrease. "Vanishing twin" she called it.
I realize now that I really had miscarried, so it was not all in my mind. It's just that we had 2 in there and we didn't know it. I feel melancholy about this news, but then again I'm so thrilled that one of the little ones made it and is doing well right now. I am just going to count my blessings and thank God for the good news. Now, for the first time, I really -feel- emotionally pregnant, like there's truly 2 of us...and it feels so good for the time being. I know we're not out of the woods, but we have passed a major milestone today.
Sunday, April 11, 2010
Beta Purgatory
Okay, this stage of pregnancy feels like purgatory to me. The image at the left is a painting of souls trapped in purgatory from Notre Dame. I'm pregnant at the moment, now just over 5 weeks along, so I'm certainly not in hell, but I'm far from being in heaven because I'm so fearful of another loss and I'm just waiting and hoping that all will be well.
I had my beta's done (blood work to check how much HCG-human chorionic gonadotropin or 'pregnancy hormone' is being produced). These numbers cannot guarantee any particular outcome, but they do provide a glimpse into the potential viability of the pregnancy. They are apart of my purgatory torture. My beta's with my last pregnancy started out quite low, and having researched this a lot since then, I now see that things were not going well from the beginning. However, my doubling time was excellent, so my low numbers at the beginning were overlooked.
Here are my beta's from my last pregnancy and miscarriage:
16 DPO: 63
18 DPO: 440
Here are my beta's from my current pregnancy:
12 DPO: 40
14 DPO: 122
17 DPO: 453
As you can see, my early beta's were are a lot higher this time around, and based on my doubling time, my day 16 beta would be about 300...quite a lot more than 63. This brings me some comfort, although I can't help wishing they were even higher just to give me some extra assurance. For now I can only hope and pray, because again, nothing is certain.
Here is a study I came across and saved the last time I was pregnant...it freaked me out at the time, and now I see it was predictive of my sad outcome.
16 DPO Beta Study...What your Beta may mean:
25 - 50 hCG at 16dpo -- Four women in this study had hCG levels below 50 at this stage. The researchers concluded that with these levels less than 25% would continue on with their pregnancy with more than 75% miscarrying.
50 - 100 hCG at 16dpo -- Of 16 women, 25% continued on with their pregnancies.
100 - 199 hCG at 16dpo -- Of 27 women with these levels, 73% continued on with their pregnancies.
200 - 299 hCG at 16dpo -- Of 48 women, 96% continued on with their pregnancies
Over 300 hCG -- All 105 women continued on with their pregnancies.
And another study I found from OBGYN News:
A quote:
"The investigators reviewed all IVF pregnancies at the New Jersey center from June 1998 to March 2004. A total of 53 patients did not have a fetal heartbeat at the end of the first trimester. Their mean [beta]-HCG levels were 56 mIU/mL on day 16, and 115 mIU/mL on day 18, with an average slope of 24 mIU/mL.
Levels and slopes were much higher for the remaining 269 women with viable pregnancies with mean levels of 216 mIU/mL on day 16 and 505 mIU/mL on day 18, with an average slope of 140 mIU/mL.
Most of the women, 180, had singleton pregnancies. Their average [beta]-HCG levels were 169 mIU/mL on day 16 and 401 mIU/mL on day 18. The researchers noted that the average slope of 111 mIU/mL was 4.62 times higher than in the pregnancies that were not viable."
I know women who have had great outcomes with low betas, but I was not one of them. I also know of women who had losses even with high betas. For now I will continue to place myself and my little one in God's hands, knowing anything may happen. And I am grateful that I am pregnant at this moment: thank you God. Of course, I don't know when I'll be out of this purgatory...perhaps not until (and unless) I deliver a healthy baby. Give me strength.
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