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.  

Death by a thousand cuts

I've been doing some thinking about how I want need this miscarriage to happen.  

I had a very traumatic experience with Misoprostal  a couple of years ago.   [Short version of that story:  It was the most painful 8 hours of my life, emotionally and physically.  I couldn't keep the pain meds down, and ended up needing a D&C anyways.]

Sometimes I get a slight case of amnesia and think that I should just take the drugs and tough it out.  Maybe they would actually work this time? I flirt with the idea, especially when I'm feeling cheap.  I want to shell out another two grand to have a D&C like I want a hole in my head.   And of course, I don't want the risk of scarring.  

I counter those thoughts with reminders of how delicate things are right now for us emotionally.  We need this to be over quickly, efficiently, and in the least traumatic way possible.     

Yesterday, I was digging around on another site trying to find where I had written about my first D&C.  I don't know why, but I needed to read it.  I gave up on trying to find it, but I came across another post that I wrote.  

It was called Death By A Thousand Cuts.  Reading it today, brought tears to my eyes, like it did the day I first wrote it.  

Over two years after writing this, we are still battling.  Our path has gotten even steeper.  I thought I was at my wits end with all of this then.  

                                 *****************************************

Death By a Thousand Cuts

DH just called this journey like it is- death by a thousand cuts. I'm in complete agreement.

This IF burden hasn't gotten smaller along the way. It's been a journey where we have both accumulated many scars along the way. Some have been little, some much larger.

I'm feeling sorry for myself right now and feel like listing some of my "thousand cuts":

* My ovaries look 15 years older than I am - big cut
* DHs sperm count is low, but useable with ICSI - medium cut
* A pregnancy or birth announcement every other month (I'm 32 and it seems to go with the territory) - little cuts
* little unintentional insensitive comments from friends like "we are going to try for a third, but if it doesn't happen by the end of the year, that's it. I'll be too old. (she's 33). Little cuts
* my BF not calling me for a couple days after I had a BFP and then spotting. (Since, I've got blood work to confirm a M/C). Knowing she's genuinely busy with her own kids and work. Thinking it the tables were turned I couldn't have probably done any better, she's been a good friend - little cut
* being tired of sharing bad BFN or M/C news with friends and family - little cuts
* seeing my MIL get teary for us when we get the call it's another M/C - little cut
* not being able to plan events and trips too far in advance because of treatments - little cut
* canceling trips because of treatments and procedures - little cut
* coming home from child-filled weekends feeling empty and jealous - little cut
* feeling alienated from friends who are in different phases of life - big cut
* listening to friends talk about their pregnancies, parenting concerns and joys- little cuts
* feeling guilty about not being a better friend to their children - medium cut
* mourning the loss of our twins at 9 weeks - big cut
* remembing the moment when DH heartbreakingly asked the nurse for just one more u/s, in case the babies were still alive - big cut
* watching our other IF friends mourn the loss of their baby born too early - big cut
* realizing that carrying a child may never happen for me, and fighting for the chance may be delaying our chances of parenting - big cut
* feeling a slight bit of stigma around adoption by some of our friends - little cut
* being mad at God and not understanding the "why me" behind this - big cut
* feeling guilty about that - big cut
* feeling like my life is on hold - big cut
* wanting to see a movie to relieve the stress, but noticing they mostly all have children or pregnancy in them - little cut
* not having motivation to do the things I used to love - including photograph children - medium cuts
* reading all of your agonizing stories and feeling empathy for your IF heartaches - little cuts
* being scared of my emotional reaction to unexpected baby comments (for me it's usually late onset reactions) - little cuts
* feeling like DH's parents may never get to be grandparents ( he's an only child) - big cut
* the money that we spend - little cuts all the time
* learning to distrust the medical system - little cut
* seeing my BFs 4 year old and remembering how long we've been trying by her age ( we started trying at the same time) - little cut
* watching DH's almost unnoticeable, but cringing reaction to that pregnancy announcement - when the to-be-grandfather called her DH "a stud" because they got pregnant so quickly - little cut
* needing a hair cut, but not wanting to go because I have talked openly about the IF journey with the stylist. Knowing my recent wounds are too fresh for that situation. Looking at my grey hairs in the mirror, wondering when I should book that appointment, in a week, or two? - little cut
* wanting to get a massage to help rid myself of the progesterone lumps on my ass, but not wanting to explain it to the massage therapist - little cut
* hating all of the shit I have to put in my vagina, and the fact that it all comes back out - little cuts
* wanting to have sex with DH but avoiding it because of 2 week waits - little cuts
* kicking myself for not having a back up list of things to do this time after bad news- little cut
* looking at the room that would be the nursery - little cut
* having some friends name their children names we may have chosen - little cut
* feeling like the are so many worse things in the world to deal with, and not feeling thankful for the blessings that I have right in front of me - medium cut
* feeling anxious for two weeks (or more of every month with a procedure, wondering if every little thing could be pregnancy or AF related - little cuts
* That moment after I thought my first m/c was complete, and to my surprise in the shower I pulled something that resembled a skinned mouse from my vagina. Having a reoccuring nightmare about pulling another one out. (sorry) - big cut
* having to tell DH that I was bleeding after our BFP one week before - big cut
* telling him it was now red blood - big cut
* not having pure joy at a BFP because we know there are still many hurdles - little cut

More cuts...
* watching DH care for our pet and call himself Daddy. Seeing how loving, playful and affectionate he is with it.  And knowing he would be a great Daddy  - medium cut
* wanting to move but not knowing when the time is right. We don't want a bigger house if it's just going to be the two of us.  Feeling like we shouldn't put too much into living here because we might not stay.  But also feeling like we have the time now to move.  -  small cut
* for those few weeks where I have been pregnant and other women, including my BF talk more openly about parenting. Feeling like most friends are always "holding back" in front of us.   - little cuts
* not wanting to buy new clothes, in the hopes that soon I'll need maternity clothes. - little cut
*  guilt that if I don't drink wheat grass, or do any other number of things that I'm not "doing everything I could" to get pregnant.  - little cut
* songs on the radio, especially Stevie Wonder's 'Isn't she lovely'.  And so many others. - little cuts
* reading a book that told me God this was all part of God's plan - medium cut
* the fact that I can't seem to get  over so many of these little cuts, many resurfacing with a fresh new big cut, making all of this even harder to cope with. - big cut

Some of the wounds have healed into strengths. I'm hardly in the mood righ now to make a full list, but the ones that come to mind immediately are...
* having more compassion for people in challenging life circumstances
* knowing myself better
* strengthening my desire to parent, and knowing that if I am given the opportunity to parent I will be better at it because of this.
* a closer bond with DH
* the many wonderful people I have met because of this journey
* the opportunity to watch and learn from friends parenting techniques.

                         ***************************************

As I read this again, it occurs to me that the reason for most of my cuts are the same.  Sadly, many of them have gotten much larger. 

I hate this.