1 in 10,000

Well, yesterday was quite a day to say the least. As we all know by now, I had been spotting/bleeding/whatever you want to call it, for about 10 days. My betas all came back normal-805 at 10dpt6dt, 2500 at 12dpt6dt, 5100 at 14dpt6dt, and 23,000 at 19dpt6dt.  My progesterone levels always looked great at > 30.  We saw a gestational sac, yolk sac, & fetal pole at 5w3d. We also saw no evidence of a SCH, or any other reason for the blood. 

That brings us to Sunday night. Around 10 pm, I started experiencing sharp, stabbing pains on my left side. I got up and headed to the bathroom, sure I was losing our baby. I almost threw up on the way to the bathroom, and I literally saw stars and felt the room spinning. I wasnt bleeding heavily, so I tried to chalk it up and decided to deal with it in the morning. 

I barely slept because of the pain, and when morning came, I felt as if I had 200 pounds sitting on top of me. I couldnt even take a deep breath. My RE said to come in right away. My mom drove me down, and I was prepared once again to hear the worst. But to our lovely surprise, there was baby, with its little heart beating away, at just over 115 bpm. I couldnt believe my eyes or ears, I just thanked the Lord over & over.  


Shortly after the amazing news, the  investigation began. My RE wanted to search around a little and see if she could find where the source of the bleeding/pain was coming from. I knew something was wrong because her & the nurse kept looking, pointing, and talking, and the scan was taking much longer than it ever does (about 10 minutes).  

Finally, she told me the news. The other embryo we had transferred had implanted in my left tube. I had a heterotopic (uterine & tubal) pregnancy, a 1 in 10,000 occurrence. I sat in shock and disbelief as she showed us the screen.  Was this really happening???

She could see blood in my stomach, all the way up to my rib cage under my liver. It had ruptured and I was bleeding internally, hence the horrific pain and bleeding. She started talking crazy about maternal death, and saving my life, and by then, I was just zoning in and out.  She said I needed to go to the ER immediately for her to operate. I was losing my left tube, and another baby. 

At this point, there was no other option. My focus shifted solely to whether or not our other baby in utero would make it. There was a 5-10% chance it wouldnt survive the surgery. Its all I could think about, even though I was technically dying myself. We rushed over to the ER, and they started all the business. EKG, bloodwork, another ultrasound, paperwork of history, etc. 

They went over receiving a blood transfusion with me, should I need one. We discussed the safest anesthesia I could get pregnant. My husband and my mom prayed with me and I was wheeled off. Did I forget to mention it was to the same room I had my D & C from our last baby?? I was out pretty quick thankfully. 

The surgery lasted a good hour and a half. My RE went in through my stomach laprascopically, and made 3 incisions. She did have to remove my left tube entirely. They also removed 150 cc of blood from inside my stomach and other locations, saving my life. 

When I woke up, I heard the best news…baby in utero still had a strong heartbeat after the surgery!!  Thank you, Jesus! My RE informed us that the 48 hours following surgery would play a significant role in baby making it or not. We go back Thursday to see. 

I am surviving now. The pain is pretty intense, but its localized to the stomach area where I was cut. Peeing and moving are the worst. I have already stopped bleeding and have no pains or uterus cramps. I was so scared I would wake up with them from the surgery but I didnt. My RE said she never went near my uterus. Another miracle. 

I am taking vicodin only as needed, and I must be out of work for a week or so on bedrest.  Im really still in shock, but incredibly grateful for listening to my body, having a wonderful medical staff, & a fighting baby still inside of me.  

Our due date is set for 12-25-16. A Christmas miracle. Praying every minute  we make it. 

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What Pregnancy After Loss is Like

A rollercoaster. Walking on eggshells, or perhaps even a tightrope. Being on pins & needles. Waiting for the other shoe to drop. Get my drift? 

The past week has been intense to say the least. We started out week 5 on a great note, with very high betas, doubling as they should. After the second one, I started spotting brown. Within 3 days, that turned to pink and then red spotting. I got an ultrasound to reassure us that our worst fears werent coming true. And they werent- we saw exactly what we should have at this point in our pregnancy, a gestational sac, a yolk sac, & the start of a fetal pole. Beautiful! 

A day after that reassurance, not only was I spotting, but now I was bleeding heavily. And it was red. I passed 2 clots. I was sure it was over. I left work & headed to the RE for the 5th time in 10 days. They drew my beta and I went home & waited for what felt like an eternity (they did not want to do another ultra just 2 days from the first, especially since the bleeding had increased after). I was sure my beta had dropped from just a few days earlier. It felt like deja vu to say the least. I was pretty numb.

The phone rang & my nurse sounded chipper. My beta was 26,000 and some change. It had increased just as it should have. I was in utter disbelief at the good news. I thanked God. We didnt miscarry. We went to dinner & celebrated the news. 

The bleeding has now completely stopped. Im praying it stays that way. We are by no means out of the woods, and I dont think we have ever thought we were to begin with, even prior to the bleed. But we are extremely happy today & we are also pregnant today. Thats all we can ask for right?

Our goal now is to make it to our regularly scheduled ultra next week when Im 7 weeks. My RE said if I have another bad bleed before then, I can head in sooner. Ive been taking it super easy, thanks to all the wonderful people in my life. My co-workers have gone above & beyond to help me get through my days with my students-they walk them to lunch, take them to recess & resource, make me copies, etc. Im so incredibly grateful for them. My husband is a saint. He has been cooking breakfast & dinner everynight, running all our errands at night, & feeding, walking, & caring for our dogs. Anything to keep me off my feet. Im so blessed to have him. And my mom, she has kept up with our cleaning and listens to me vent…constantly. God bless her. 

Symptoms/Medications?

I have been nauseous on & off, with both aversions & cravings, and swollen boobs. No complaints, Ill take all the symptoms I can get! My progesterone has been increased from 1cc to 1.5cc, even though my level was still in normal range (30). We figure it cant hurt. Well, I take that back, it does hurt…it hurts my ass! We have run out of spots to inject and Ive had a few welts here and there. Ouch!

Heres to an uneventful week ahead…

FET #3: Beta #3 

Today is a good day. We got back our results this afternoon and our beta did double since Wednesday. Thank God! 

  • Monday-805 HCG, Progesterone 40
  • Wednesday-2504
  • Friday-5134, Progesterone 37

Yesterday & today I had some dark brown spotting (NO cramps at all thankfully).  I know brown is old blood, so I was a little bit more at ease than when I have had bright red blood in past pregnancies. I know bleeds can be totally normal in pregnancy, but with a history of recurrent pregnancy loss its hard to keep that in mind. So, of course I began to think the worst last night. I prepared as much as I could to hear that it was all over & our numbers had dropped when they called today. Its happened before. I also requested to have my progesterone drawn with my beta to make sure it wasnt below what it should be, as I know this can cause a bleed.  

I really couldnt believe it when they called & said all is progressing as it should still. The brown blood is not a sign of harm. So incredibly grateful for this. Now the 2 week wait for the heartbeat or heartbeats begins. The waits are never ending as you all know. Praying for a really uneventful 2 weeks until then!! 

On a different note, I have to share with you some of my 3rd grade students handmade animal projects because they came out delightful & really put the cherry on top of my day! So proud of them…



The Plan

After collaboration between my OB, RE, and family Dr., the decision was made that I will not be on any anti-depressants or anti-anxiety meds during a future pregnancy. I am OK with this decision. I trust the professionals and what they feel is best for me at this time. 

The bloodwork my Gastro Dr. ordered came back today. It was completely normal, with the exception of my elevated Bilirubin which is benign.  This being said, there will be no further evaluations needed in this area. 

  
The plan for our all natural FET will be as follows:

  • Make sure we get the “all clear” from our hysteroscopy scheduled in early Sept.
  • Day 3 ultrasound and bloodwork in late September 
  • Pee on OPK sticks starting cycle day 12
  • Go in for an ultrasound when we have the positive OPK, detecting LH surge, most likely on cycle day 14 
  • If ultrasound shows lining 8 or > and a follicle measuring at least 16mm, we will trigger that night
  • Start minimal progesterone supplementation 36 hours after trigger or 6 days prior to transfer (pretend retrieval day) 
  • Transfer 1 day 6 embryo 6 days after progesterone begins!! 
  • Bedrest for 48 hours
  • Pray for a BFP & a sticky baby due in late June 2016 ❤️

***As you can see, no estrogen, Lupron, or any of that jazz!!

I will also continue to see my therapist during this cycle. My goal for our upcoming session is to develop a plan for what we are comfortable doing beta and ultrasound wise should we get a BFP. It would probably be smart to devise a plan for a BFN as well. 

I am going to put a call in to my acupuncturist this week to start treatment again. Id like to get a package deal if possible, something they havent offered in the past. I was dropping $75 a visit and usually more than once a week for a few months. Ridiculous!  However, I love her and I know she knows what she is doing. It is also a natural remedy for my anxiety.  I have gone to my acupuncturist for all 3 of our transfers but only up until transfer day. I was always scared to continue after transfer, yet I read about you ladies doing it all time. I asked my RE about continuing after transfer and she said it was fine too. 

Please share with me your experiences with ongoing acupuncture after transfer! 

Updates

RE Update

I must say that I was pleasantly surprised to get a phone call from the new RE this week.  He called to discuss my higher than average progesterone levels during my prior pregnancies.  At our initial consultation, he told me he would look into the levels and discuss them with a few colleagues at his practice.  He never said he would be calling me anytime soon about it, and so I assumed it would just be discussed at our next face to face meeting.  I was wrong-he did call on his own accord, and that was impressive to us!

After collaborating with a few other professionals in the field, he feels confident that my high progesterone levels did not negatively affect any of my previous pregnancies, meaning the levels are unrelated to my miscarriages.  However, he did say since my body is doing such a “fine job” (a compliment about my body for once!) absorbing the progesterone, there is no reason I need so much of it.  For example, 2 Crinones per day, plus 3 Prometriums per day would not necessarily be needed. Of course, we need to monitor these levels closely once pregnant to be absolutely sure (since every pregnancy is different), but so far the pattern of high levels has remained consistent over time. As you know, we are trying to be as non-medicated as possible for our next FET, so this is truly wonderful news that we may be able to cut back a bit.

Family Dr. 

I also had a chance to see a family doctor this week, which is good because I haven’t been to one in years.  RE appointments have basically hogged all of my time in the appointment department.  The Dr. I met with was great! I went over my history with Dr. L, focusing mostly on our infertility and recurrent pregnancy loss.  She listened intently and inputted information into the computer as I talked.  I explained how anxiety has been getting the best of me since RPL.  I also expressed how this panic and fear is even worse when I see the pink lines.  Dr. L could relate, she also miscarried several times and didn’t get to finally bring her babies home until her late 30’s.

Before the appointment with Dr. L, I called OTIS, the pregnancy hotline number that the new RE gave me.  I called to see what meds they propose to be the safest during pregnancy as I knew this was a topic I wished to discuss at the family Dr. It would be important to note that obviously no category is guaranteed to be safe, so I guess I should say categories with the least risk, or considered the most safe during pregnancy. They informed me to stay away from anything in category D, which the RE and Dr. L ended up saying as well.

I told Dr. L that I prefer not to go on an everyday anti-depressant, rather I would like to have an anxiety medication available to me on an as needed basis.  For example, before an ultrasound, after a spotting episode, or when something like prayer, yoga, acupuncture, or homeopathic remedies do not work.  Ideally, I envision it to be more of a “back-up” plan than anything.  If I have learned anything throughout this process, it’s that anxiety is the REAL DEAL.  It’s not as simple as thinking happy things like unicorns and roses and all turns OK.  And while I understand anxiety doesn’t come from God, I also know that sometimes it doesn’t just disappear after traumatic experiences either.

Dr. L found my request for anxiety only medication on an as needed basis to be reasonable, but warned me that since my anxiety can be so overwhelming once I am pregnant, I might find myself taking it everyday anyways.  This is not what I want to do, or intend to do, but I think she makes a good point here.  Something to at least consider.  Most importantly, Dr. L and I both agreed that to have come this far and then take something that could substantially increase the chances of birth defects is simply just not worth it.  She thinks looking into a category B drug could be an option for us.  Specifically, the anti-anxiety medication, BuSpar (I believe that is what she called it, but not 100% sure).

However, Dr. L recommended we do 2 things before we make any final decisions:

  1. She wants to consult with both my OB-Gyn and the new RE.  She wants to have a consensus about how we can get me to achieve the healthiest pregnancy possible without me bring a total train wreck during it, with stress and blood pressure levels through the roof.  I really love that she wants to speak with both of them to discuss other patients who have been on anxiety meds, their experiences, risks, benefits, outcomes, etc.  She thinks everyone needs to be on the same page with this.
  2. She wants me to do a urine test.  This is a 24 hour test that I have never done before.  I know, believe it or not, I have not had this test! LOL.  Anyways, I pretty much pee in a bucket for 24 hours (gross) and then drop it off to be analyzed.  She wants to check some things further with how I process insulin, and this test will do that.  She said it is important and I figure, why not! I will do it sometime later this week.

I will go back in after the urine results (she said they will squeeze me right in next week) and she will have consulted with my OB and the RE by then. Dr. L gave me a hug when we finished up. She was very empathetic and I appreciated the kindness. I also loved that she didn’t want to jump the gun and make any rash decisions about something so important. She could have easily written me a script for some medication today as many do, but she did not.  Not like I would have taken it anyways, but that’s not the point here.  Knowing and carefully weighing out all of our options is the point.  Leave no stone un-turned!

Second Opinion #1

This week has been full of surprises! Right now, I am going to focus on the RE piece, and save the other stuff for later.

We had an appointment with another well-known RE for a 2nd opinion about our IVF and RPL situation this week.  Overall, it went extremely well!  He spent 3 hours (no joke) going through our records and discussing them. 

Before I get into detail, I should first start off by saying that according to ASRM, this clinics success rate for live IVF births is equivalent to the clinic we are at now (about 60% which is quite good if you research clinics across the US).

Here are some of the main points we covered at our consultation:

  • I need to be tested for Vitamin D deficiency as I have never been.  Went and got this done today.
  • I need to be tested for Celiac Disease.  Celiac disease can be linked to recurrent pregnancy loss, but is not on the usual RPL panel work-up & of course, I have not been tested for it yet either.  You would think since it is a simple blood test, why wouldn’t my current RE just order it? If I did end up having have Celiac disease, it would require a gluten-free diet. I also got this test done today.
  • Husband needs to get his testosterone, LH, FSH, Prolactin, etc. run again so we can see if Clomid would be of any use in upping his count.  It has been about 5 years since we tested these in him. They were all in normal range before, so using Clomid was not an option (it doesn’t assist with just a low count, there has to be a hormonal imbalance happening too).  Got this test done this a.m. as well.
  • This RE was very impressed with my husbands improvement from pre-varicocele surgery to now, 2 years post surgery.  He said our chances of conceiving on our own have gone from a measly 1% to about 15%.  And if we got him on Clomid, there would be an even higher chance on our own or via IUI, about 25%.  Hey, we will take what we can get here!
  • At this clinic, we can pick any day for our transfer, as we go along in our cycle.  It does not need to be done in advance.  This is HUGE to us.  Our current clinic only does transfers 1 week out of the month, and hence, they try to control everyone’s cycles with BC and Lupron, picking out the exact transfer date months in advance.  I despise this! This clinic does transfers 365 days a year if needed, depending on the woman’s individual body/cycle. Just call on day 1 of your period and off to the races you go!
  • He would only want to transfer 1 embryo in a future FET.  Great news!!!  Why do we need to transfer two if I get pregnant with twins every time we transfer two?  If we transferred just 1, we would most likely still get pregnant like we did the first time when we transferred 1! Obviously, I do not do very well with twins, and he felt that there is a chance that one twin vanishing could have affected the other making it.  Of course, there are lots of times where one vanishes and the other does perfectly fine, but not always.  There is no solid way to prove or disprove if losing one twin could have played a role in losing the other.  
  • He would do a non medicated FET like we have been pushing for.  Since my cycles are regular, & my lining looks well post surgeries, there is no reason not to.  This could involve the use of trigger or not, which we can decide down the road.
  • He wants to investigate my super high progesterone levels during each pregnancy. Our current RE said my levels are the highest she has ever seen, but also said it wasn’t an issue as far as loss goes; only low progesterone is a cause of RPL.  I know that low progesterone can cause loss, but there is something strange about how high these levels are when pregnant.  When this RE saw them, he also said they are also the highest he has ever seen.  He has been practicing for 30 years.  Hmmm…sounds fishy to me.  Our last pregnancy my progesterone level was around 300, and we are talking about with my first beta it was this high. First trimester progesterone levels are usually under 80!  They stayed consistently high like this too until every loss.  I was using Crinone for my progesterone supplementation during each cycle.  Obviously, I did not need to be doing the Crinone 2 times per day at $15 per insert for 10 weeks with a progesterone like that.  When I mentioned this concern to my current RE when pregnant, she said to keep doing them as I was regardless of how high the levels were.  Uh, OK.  The new RE said he would like to discuss the levels with his partners at the practice, which we really liked to hear.  Never once has my current doctor said she would like to consult with another person about us.  2 minds are better than 1, right??
  • He wants to perform a mock transfer if we choose to move forward at his clinic, and another Hysteroscopy to be sure my uterus is all clear.
  • Relocating our embryos will cost us $100 (dirt cheap in the IVF world), it’s a simple form to fill out, and takes about 2 weeks to get done start to finish (both clinics use the same transportation/storage facility which is good).  Also, the embryo medium is the same between clinics, they have had several patients transfer back and forth between the 2 before without issues.
  • He feels our chances of carrying to term are still quite good; I didn’t bother asking for a percentage.  He said he has had patients that have carried to term after 3 unexplained IVF losses with no prior children.  Hope!!!
  • He cannot definitively say that the submucosal fibroid caused our last loss.  Mainly because we do not even know with certainty that it was there during the pregnancy since the Hysteroscopy that identified it was not performed until 2 months after.  We figured this already.
  • We discussed anti-depressants, and post-partum depression, which due to my situation, I am at high risk for. You would think it would be the opposite, but its not. More to follow on this soon. 
  • Saving the best for last, his practice has a blood and ultrasound monitoring center literally 10 minutes from our house! Almost unreal, right? We are used to traveling about 70 miles per visit.

So, now what?  Well, we still have an appointment with another new RE set up for July 22nd.  However, we have started to ask ourselves if we should even go for another opinion??  Will it just confuse us even more?

In addition, we have an appointment back at our current RE August 6.  I feel like this appointment is almost a last-ditch effort; one last chance to tell us what we can do differently moving forward.  Each day though, I wonder if I even want to bother with it.  I guess the question is, if we like this new RE’s opinion & experience, should we just make the decision to go there and be done with it? Perhaps more information will just cloud our vision even further. 

  

Life After Loss

I have been pondering a question for quite some time now…Is there ever such a thing as officially being in the “safe zone” when pregnant? A place far, far away from the throes of miscarriage? A place where you no longer worry about losing the life inside of you?

Each one of our losses has been entirely different from the last. Before our first loss, we honestly didn’t even think of miscarrying once we FINALLY became pregnant via IVF.  All we wanted was to

Get those 2 pink lines

We got those 2 lines, but not for long. Unfortunately, we miscarried. In all actuality, we pretty much lost that pregnancy before it even began.  We had low, slowly rising HCG levels to begin with. So when we moved forward to our 2nd IVF go round, our mindset was, “If our HCG levels come back decent, and at least double every 48 hours, then this pregnancy will be surely be safe.”

Get high, quickly rising betas

All of our numbers came back beautifully with IVF pregnancy #2- 301, 776,1800, 4300. Progesterone over 70.  The HCG levels were not only doubling, they were increasing by over 100%.  We were ecstastic. However, the day after my beta hit its highest, we miscarried. We still to this day don’t really know why.  We were under the impression that HCG increasing as ours did indicated a pregnancy progressing as it should. Wrong. 

Moving forward to IVF #3, we realized that high, rising levels would not mean much to us if we fell pregnant again; we had been so naive to think that these alone guarantee a pregnancy progressing.  We soon remembered that there are no guarantees in this ugly IF and RPL war. 

Get to the first ultrasound 

Well, pregnancy number 3 brought those high, rising HCG & progesterone levels just as #2 did, but these didn’t reassure us as they had before. We were smarter now. We had learned our lesson; we wanted more.  This time we felt the ultrasound would be the only possible reassurance that we were in the so-called “safe zone,” especially after I started bleeding very early on with pregnancy #3. Seeing that blood was just a sick reminder of loss #2.

We went in for our first ultrasound early due to the bleeding, & it gave us the relief we were searching for for so long- heartbeats. Not one, but two. Followed by the words which still ring ever so clearly, “the chances of miscarriage at this stage, after seeing a healthy heartbeat & correct measurements are only 5%, and the chances of you miscarrying 3 times in a row, only 1%.”  This being said, surely we had to be safe now, we had never made it this far!  God forbid, one of the babies didnt make it, surely the other one would. Wrong. 

We miscarried 3 weeks after that first ultrasound, after seeing our babies growing week after week. What are the chances right? Four ultrasounds later, we fell into the dreaded, minuscule 1% of the population.  This being said, even ultrasounds could no longer provide a “safe zone” for us. At just shy of 10 weeks pregnant, almost ready to announce our pregnancy to the world, it was over.  

Since this late first trimester loss, I have met way too many women who have miscarried at 14 weeks, 16 weeks, 20 weeks, even 25 weeks or later, losing their beautiful babies far too soon.  Most of them I have met right here on this blog.  These are some of the strongest women I know. 

Getting to bring our baby home

That is the only safe zone we see.  There is no such thing as being in a “pregnancy safe zone” in our eyes. Thanks to our unfortunate experiences, we are smarter now.  Maybe even a little too smart because of what we have endured & seen others endure. While I truly wish it wasn’t this way, it is. 

However, for now, we choose to make the best of what we have been dealt.  Fear can be crippling if you allow it to be. And although we are firm believers in God & the peace he gives, it still scares us to death to think of the possibility of losing pregnancy #4 one day.  All we can do is continue to take it to him in prayer as we always do.