What happened at the ER and POC testing

They saw me within 20 minutes or so of arriving to the ER.  I was thankful for that.  We spent from 11am until 3:30pm having ultrasounds, waiting on blood work (CBC normal, HCG 14,000ish).  Because my blood type was RH positive, I did not need an RH shot.

The ultrasound showed retained products of conception (I still really, really hate that term) at the base of the uterus.

A nurse practitioner did a vaginal exam, and tried to remove some of the visible POC.  Unfortunately, she didn't have much luck.

We were waiting on an OB consult, but decided to go home and have the nurse phone us with the information.  We were feeling much more relieved just knowing what was going on, so this felt like a good alternative to spending more time in the ER.   We were also hungry, which fuelled our desire to leave sooner.

Not surprisingly, the OB gave us three options.
1.  Wait a while and pass the tissue on your own.   Get follow up ultrasounds and blood work.
2.  Take Misoprostal to *hopefully* get the rest out.
3.  Have a D&C.

The pain of the natural miscarriage is too fresh in my mind.  I can't do #2 any day soon.  I don't see the harm in waiting a while to see what happens on it's own.

Maybe this is what I should have done, rather than go to the ER yesterday? I don't know.  It's easy to second guess things after you have all of the information.  Or, at least that's where my mind usually goes.   Yesterday, I was on the fence about the decision to go to the ER,  but CCRM, a ER nurse, and the nurse receptionist at my OB's all suggested I go in.  And I was freaked out, so I took their comments seriously.   Oh well, I suppose.  At least we know what was going on.

The CCRM nurse gave me a follow up call to see how everything went.  She agreed with the OB's three options.  We also discussed the POC testing.

A few days earlier, the CCRM geneticist told me that they haven't been doing this testing with Natera for very long.  The geneticist told me the test would cost $400 plus shipping.   When I called them to double check the cost of the kit (at D's prompting), they told me that it is $400 with insurance and $800 without.  We don't have insurance.   If there was no sample to test (because we didn't collect it properly), they would still charge us the full price.

We asked Natera questions about the collection of the sample.  We were really unsure about what we collected.  What we have looks nothing really like the pictures they provided, but there really wasn't anything else to select.

We were torn with what to do.  Maybe nothing looks like the diagrams because it is still inside me?  I don't friggin know.

I told our nurse that we were really at a loss for what to do.  I told her that for $800 I could probably buy myself something really great to make myself feel better for everything that's just happened.  Although, sigh, I wouldn't.

She said that it is very confusing to do the collection.  That she has been in the operating room many times where the doctors are trying to identify things appropriately and it is difficult.  She said that she has seen a lot of results come back as normal female (which doesn't mean anything because it could be my own cells).  She reminded me that there was no right or wrong answer here.  That either way, our decision would be ok.

After taking everything in, we decided not to do the testing (again).  I don't feel comfortable with what we have collected.  We don't have an endless supply of money to keep throwing at this problem, and I already feel absolutely sick about how much we have already spent.  The result isn't going to change what we do with our next transfer.  The information may have added something to the conversation if our next transfer is unsuccessful due to BFN or things much worse.

So now, I sit back and wait.  I'm hoping for cramps to help finish up this show, so this part of things at least can all be put to rest.

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(Note - CCRM wants a beta and an HSG or Sono after my next period to confirm everything is ok).

It's over, but not completely

We made a plan that I was going to take the Misoprostal on Monday night and Tuesday morning. This was the latest day that the nurse recommended to do it. We were waiting for the holiday weekend to be over.

My body had its own idea though. On Friday, I started having a small amount of bleeding and slight cramping.  On Saturday night at 6pm, I started having major cramping and knew that it was going to happen. 

For three hours, I passed a lot of blood and clots.  The cramping went from severe period like cramping to horrible abdominal pain. It got really intense. It was the kind of pain where you think about calling an ambulance, but you also can't imagine being touched, let alone leaving your bathroom. 

I took two different kinds of pain meds, but they felt like they did nothing. 

We didn't have any prescription strength meds because we hadn't filled it yet. I didn't expect to need them before I took the Misoprostal, so I was unprepared. Half way through the miscarriage, I was desparate and D asked a friend who lived nearby to fill the prescription for painkillers.   

I passed something the size of the palm of my hand, and that seemed to relieve my pain almost immediately. I don't think that I have ever felt so relieved in my life. 

With my first miscarriage, I assumed that the extreme pain, etc. that had was largely from dramatic effects of the Misoprostal. This time around, I realized that it probably wasn't the meds but the miscarriage itself that was the biggest pain inducer...silly of me to think that, but now I've learned a bit more I guess. 

We tried to save the larger pieces ofthe products of conception. We were hoping to identify the gestational sac, so that we could complete the Natera testing. 

At first that seemed very disgusting but after a while we almost seemed like scientists. It was a somewhat fascinating to see what had been in my uterus. 

We picked out some things that we though were suitable and put them in the specimin container. Honestly, despite having the diagrams to go by, we had absolutely no idea what we were doing. 

We had planned to send that away today after we had D's blood drawn (because it's DE). 

Again, we learned that nature sometimes has its own plans. I checked in the shower today if there was anything left that I could feel in my vagina. I did this because in my first miscarriage, a week after I found a chunk of something lodged. That time, I was able to get it out. This time, I couldn't. 

I didn't have any cramping, otherwise I would have a little hope that it would come out on its own. 

I felt so disappointed and upset. Why couldn't this just be over?  The relief that i felt yesterday was gone. 

So today we decided onve again what we would do. We called the clinic and our OB to see what they thought. Both said to go to the Emergency Department, so that is where we sit now, waiting and wondering what's next. 

Meeting

We had a good meeting with Dr. Highrisk today.  We felt like he was much more on his game today.  He was way more talkative and was very helpful. 

He helped us weigh the risks and benefits of the D&C and the fetal chromosome analysis.   He said that he would put us on the operating room waiting list this weekend for the procedure if we wanted.  He told us though that he wanted us to know about some of the things he was thinking about. 

A few of the key things he told us:

• In all likelihood, we would be at the bottom of the OR wait list, because practically every other case would trump ours in terms of urgency.   A long weekend approaching doesn't help our situation much either.  He said there was nothing he could realistically do to change our place on the waiting list.  For example, if a child came in with a burst appendix, they (of course) would go before my case. 
• 50% of miscarriages in his opinion happen with genetically normal fetuses.  He said doctors really just don't know always what causes miscarriage.  (I'm not sure of what CCRM would say on this... have any of you heard anything from your doctors on this?)
• He didn't feel confident that we would be able to capture the fetal tissue that we needed for the sample.  If the fetus stopped growing at 6 weeks, 3 days, and that was three weeks ago, there is probably not a lot of tissue left that would be suitable for the testing.  
• He said he didn't think that the results of the chromosomal testing would substantially change our next step.  Are we going to put in more of the embryos that we have regardless of the result? Yes.   Would it mean our remaining embryos are more or less likely to be normal or abnormal? This would not help give us more reliable information.  
• We asked what if it was a genetically normal result?  He reiterated that 50% of miscarriages might be chromosomally normal. 
• The risks of complications with a D&C are 1-2%.   He explained the procedure and what can go wrong. 
• He explained that he looks at things as risk/reward.  Overall he thought the risks were small, but the benefit of gaining any useful information would also be small. 
• He explained why my first experience with Misoprostal might have been so bad: 
1. It was a twin pregnancy and therefore there was twice the tissue.  
2. I may have taken it orally (I can't remember), and this could cause more gastrointestinal upset (this was a huge problem - I couldn't keep my painkillers down).  That if I take it vaginally it could be easier on my system.
3. That the first time a person's body has contractions for miscarriage (or labour), it is harder for the person's body to adjust to them.  The second time it may be easier for my  body to do what it needs to do.  
4. I could take the painkillers differently (especially earlier than I did the last time).
• If we wanted to do a drug induced miscarriage, he suggested 4(!) Misoprostal tabs vaginally on day 1, and then 4 more 24 hours later.  He gave me an prescription for painkillers too.  I think the last time I took two in total.  He said that misoprostal is one of the most studied reproductive medicine drugs, but the administration of it can be very different depending on your doctor.  
• Most people who are waiting to have an unmedicated miscarriage (from a missed abortion/missed miscarriage) will have it around 12 weeks.  He didn't feel there were risks of waiting. He thought it was a decision to be made mostly based on emotional considerations.  Do we want to wait it out or have it sooner?  I'm in the sooner camp.  Let's get this show on the road so we can move on to better things. 

After we had our meeting, we weighed what Dr. S said and what he said.  We considered trying to do the miscarriage testing kit on our own with a home miscarriage.  

When we picked up the kit we decided that this is definitely not going to happen.   

Natera requires a paternal blood draw for a donor egg pregnancy (which we could work out).  They also require you to try to separate the fetal tissue from the gestational sac with a saline solution.  They give pictures and descriptions on how to do this.  

Attempting to sift through the products of conception to find something the size of a lentil, is not something I want to add to this experience.  Just the pictures alone that came with the kit were hard to look at it.   Not to mention, that the first time I had a miscarriage there seemed to be so much blood! At times it looked like I was "peeing" blood (full stream) from my vagina.  I also had terrible diarrhea from the Misoprostal.  Sorry for the visual.  D and I are definitely not going to be sifting through any of that.    

So, it looks like we've made a u-turn. 

We are going to wait a little while, then try the misoprostal again and hope for the best. 

It's complicated

Written yesterday...

I am so angry. So fucking frustrated.  I hate today too. 

After A LOT of coordinating, we were scheduled to have our ultrasound at 10:30am, and our phone consult with Dr. S in one of our clinic's conference rooms at 11:00am.  It was tight, but we were working around two doctor's limited availabilities, and trying to get answers as soon as possible. 

We had coordinated this appointment day, based on the doctor's availability.  They said the doctor would be in on Thursday, and that day could work for the D&C.   We got permission from Dr. Schoolcraft to move our ultrasound from Thursday to Tuesday for this reason.  

When we arrived, the waiting room was as packed as I have ever seen it.  I told the receptionst about our predicament, about needing our ultrasound results for our 11:00am call.  I told her that our nurse was aware of the situation, and she would just need to know that we had arrived right away. 

I was feeling confident that what the nurse confirmed with me (most recently at 8am that morning!) would acutally work out, we sat back and waited, not so patiently. 

5 minutes later our nurse appeared in the waiting room to call another patient. We made eye contact. 

15 minutes later, at 10:45am, we still had not been called.  

Rage was brewing in a major way.  Why the fuck would they tell me this was possible if it was not? 

We tried to accept that shit happens and maybe they couldn't help it.  Maybe someone else was having an emergency that was more important than confirming my baby was indeed dead.  D tried to calm me by reminding me that in all reality, no new information was going to come from this ultrasound anyways, and that not having it wouldn't likely change our post-consult with Dr. S. 

At 10:50am, we had missed our window for the ultrasound.  I asked the receptionist for the conference room.  5 minutes later, she came back and said they didn't fucking have one.  My anger which was a 9/10 before ballooned.   I'm sure my frustration and disgust were written all over my face.  I said, "I guess I will go out to the car". 

We had the consult.  In typical Dr. S style, we started the meeting off with a big awkward pause, where he probably wanted us to ask him questions.  We wanted him to talk first, but it didn't seem like he had much to say.  Finally, we said, "We know that donor egg isn't perfect and that miscarriages can still happen, but we weren't expecting this.  Do you have any thoughts on what happened?" 

We also asked questions about a lot of things; fetal chromosomal anaylsis (pros/cons/info gained), if our protcol would change as a result of this news, how many embryos he would recommend next time, the pros and cons of doing a D&C this week vs. next.  D wanted to ask if stress could have played a factor in this.  We also questioned what the chances of a miscarriage would be with DE (challenging the 5% number we heard before). We also wanted to know if he thought we should we now CCS test our remaining embryos?

His answers were:

- Yes, he recommends an anyalsis of the fetal chromosomes. If it is abnormal, or male we will have important new information.  If it is normal female, it is possible that the results were from my tissue.  They have a lab that says they have a way of avoiding this problem, we could use that one.  We learned later it is called Natera, and CCRM has just started using them.  It costs $399 plus shipping, which is significantly lower than the Quest lab quote I got for close to $1500. 

- No, it's not to early to have this done. 

- We should regroup afer getting that information back. 

- The risk of the D&C in one week is that the sample may not include all of the products of conception (I hate that term). 

- There isn't probably a change in protocol he'd recommend, because I was already on Lovenox for miscarriage prevention. 

- Next time he would want us to think about transferring two embryos. 
- Stress can affect hormone production in natural cycles.  However because they were controlling my hormones, he didn't think it was a factor.  There was no research to suggest a relationship.   

- There is a small possibilty that the sperm could have contributed to a genetic problem with the embryo, however D's chromosome testing and the donor's were normal. 

- CCS testing the embryos would probably be "overkill". 

-The chance of miscarriage with a 20 year old woman is 20%. (There was obviously a large communication error with Dr. G when we heard 5%. Maybe he thought we were asking something else? I don't know).

We felt satisfied with this conversation.  We ended the call and went back to the clinic to have our ultrasound.  

A different nurse came out and told me that they had come out to get us just after we left. She said they were going to try to squeeze us back in with the doctor.  She made it sound like it was our fault that we left.  

After waiting eons, we finally had an ultrasound. And, yep, the baby was still dead and small. Surprise, surprise. The doc said it had already started to degenerate. He said that by the way it looks he would guess it was a chromosomal abnormality  Off the cuff, he said if it wasn't abnormal, that he would recommend a gestational carrier.  

Then, he dropped a little bomb on us. He said there was no way for him to do the D&C because they don't have a fucking suction machine.  "You'll have to go to an OB" they said. 

Huh?

I had a D&C in that office 2 years ago. 

He says he"ll look into it, maybe they can borrow one. He said he borrowed one so he could do his own wife's D&C. 

He came back, and said no. 

Then the nurse came back in and we discussed it further. She told us it was the surgical manager that said no. I asked if an exception could be made?  If we went somewhere else for care, we doubted that they would rush to get this done for us (unless we fly to CO).  Not to mention that we want a doctor we know and trust because of the risks of scarring. 

I asked if she could check again with the manager.  We were long time patients, we just needed this one thing.  We didn't have another alternative for care.  Could they please, please help us?

She said she would ask again.   She did, and she said the doctor said no this time.  

Thanks a lot, Doc. 

After I thought about it more, I got even more pissed off that they wouldn't help us.  I also however, didn't want a doctor doing the D&C who doesn't do them often.  

Why does this have to be hard too?

Our options for care as I saw them were:
1.  Going to an emergency room for care and getting a random doctor. 
2.  Going back to Dr. Highrisk.  However, he isn't exactly in my good books anymore after not diagnosing a 5 week fetus as a problem in a supposed to be 7 week pregnant woman.
3.  I have another OB, who I haven't visited in over 5 years.  I don't have faith in him because my friend (who is a maternity nurse at the hospital where he works) told me that she wouldn't choose him for her care.  She was trying to be professional and we didn't go into specific issues about him, but she hinted at issues. So, needless to say, I want to stay away from him too. 
4.  I called another RE that I had dealt with in another city a few years ago at a specialty hospital.  The nurse said he doesn't do D&Cs, and that there is a clinic in the hospital that would help me, but it wouldn't be until after the long weekend.

Time is of the essence.  In a week, who knows if there would be anything left to test? Maybe the baby will have degenerated a lot more, or maybe I will start to bleed. 

I feel so frustrated that I just want to give up on this.  I am exhausted, super bitchy and overwhelmed.  I told D I that I was done.  

D said he would take over and make some calls.   

He called a local fertility clinic without any luck.  He also called our family doctor to see if he could help.  He priced out flights to CO to see what that option looked like.  The flights were expensive on such short notice and so close to a holiday. 

If this option ended up costing too much money, we could put that towards testing the embryos.  We wanted to be mindful of that and not to spend too much money. 

D was able to speak with our family doctor.  He reassured us on why he selected Dr. Highrisk for us.  He said that out of all the doctors he could have chosen for his wife's pregnancy, he chose him. That he thought if there was even a 1% chance that he was bad that he wouldn't send us to him because of how precious this pregnancy was to us.  He told us about how everything Dr. Highrisk read from the ultrasound tech's report would have not raised red flags to him.  He said that this doctor was highly sought after by the hospital and that he is well respected across the country.   

While I'm not totally good with everything that happened in our last visit, I agreed to see him again.  

We are running out of options.  We fully trust our family doctor.  We are meeting with Dr. Highrisk first thing tomorrow morning to see if he can help us.   Hopefully he can.