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.  

Doctor hunting

CCRM asked for me to find an OB, and have my first ultrasound with them after March 27th.

Some people, fertiles and infertles  have everything mapped out about their pregnancies and babies before they arrive.  We could never bring ourselves to do this.  It wasn't something that brought us hope, but rather highlighted our infertility.

So, even when CCRM suggested I look for an OBGYN when we started our last cycle, I didn't.  I figured worst case scenario, that I could go to my last OBGYN, even though I haven't been there since I was 28 years old.

I remember my last visit to that doctor vividly.  He told me that my FSH test was normal (later I learned it was meaningless because I wasn't instructed to have it on day 3).  He explained D's sperm analysis, and in a low, hushed tone, mentioned the word "STERILE" and wrote it down on the page in caps.  I don't feel like revisiting those memories any more than the million times I've already have.   However, I did daydream about telling him that after 6 years, since I last saw him, guess what? This is a DE baby with D's sperm!

I asked my friend, a local maternity ward nurse, who she would recommend?  She told me that she wouldn't choose my last OB.   She instead suggested two others.  One was female, the other was male.  Recommendations being equal, I decided to go for the female.

I needed a referral from my family doctor to see the new OB.  His secretary told me that I'd need to come in for an appointment to get a referral.  I suggested that he might make an exception for me, explained a little bit of the situation and she said he'd call me back after reviewing.   Later that day, he called to offer his congratulations and we had a discussion about why I was looking to go to that doctor in particular.

He suggested that I go to the local high risk OB instead.  This surprised me.  I think the blood thinners I'm on and my family history of stroke make him nervous.  It felt a little like over-kill to me, but I figured I would go with it.  I thought, a more highly trained doctor isn't be a bad thing, right?   I figured if Dr. Highrisk didn't want me as a patient, that I could get him to refer me to the other less specialized female doctor that I wanted.

Dr. Highrisk is the only one of his kind in the city I live in.  He's a busy guy.  His receptionist is a busy gal.  And from what I can gather, they don't answer the phone very often.  When you get voicemail, it instructs you to not leave more than one message a day.  Every day that was ticking by, waiting for my call back, was stressing me out more, knowing that my ultrasound appointment time was getting farther and farther out in the future.

Wondering if there is a heartbeat, or anything going on in that ute of mine is driving me crazy.   Over and over I can't help but having flashes of when we had the twins, all of the excitement and then things crashing down,  when we realized we were staring at two very empty sacs.   This week, D called that that experience "the worst horror of his life".  In part because of the situation I'm sure, and in part because of how badly I crumbled after.

I wondering how this ultrasound is going to be? What kind of day are we going to have that day?  With only one embie in there, I'm reminded that there's one shot, once chance at a heart beat.  Knowing that when we get our ultrasound that we'll be 7 weeks along and it will not be too early to see the heart beat if there is one.

I tell myself, as some others in my life do "You got what you wanted, a BFP! This is real! Now be happy! Be excited!  Enjoy the moment!" But that's just not how I'm feeling.  I can't decide if it is infertility that has done this to me, or is it my now my personality after being in the trenches for so long? I never used to be a negative Nelly.  But I didn't know just how ugly the world could get then either.  It frustrates me and saddens me deeply.

Anyways, back to the doctor stuff.  Yesterday, after talking it over with D, I decided to physically go to Dr. Highrisk's office at the hospital.  I was going to say that I was in the area, and that I just wanted to check in...blah, blah, blah.   If I needed to encourage the secretary to give me an earlier ultrasound appointment than what she first offered, I planned what I would say.  Trying to find the right words for a likely desensitized secretary to feel empathy towards us could be difficult.  I settled on something simple.  "We've had six years of infertility and early losses, is there any way he could squeeze us in sooner?".  I hoped it would do the trick.

When I got there, the front desk of the hospital didn't want to let me in without an appointment.  This was probably heightened because the hospital is under an influenza advisory.   I told the receptionist that it was complicated, that I had a referral to be there, but I couldn't get in touch with them.  They let me in.

When I made it to the doctor's office, I breathed a huge sigh of relief.  The receptionist was as sweet as can be.  Her name is Joy.  She was one of those people whose name matched her personality so well.  She was tremendously helpful.  She said she remembered my name, but couldn't find my referral in her big stack of papers.  After searching for a few minutes while apologizing, she found it.  It was missing information, so she had set it aside.  It turned out to be information that would not have been known by my family doctor, and would have taken some time for them to complete.  I was able to provide the information, and fill in some of the blanks.  Phew! for this reason alone, I was glad I went in.

After consulting with the doctor briefly, Joy said he wanted to draw a beta and he could meet with me that day, if I could wait.

So, I had my beta drawn.   I later learned that Joy wanted me to see the doctor so he could prescribe some progesterone support, because of my early losses.  I told her that I was on hormones, that I was being monitored.  We decided that it would be best for the doctor to see the results of the beta (she told me they wanted it over 5000), and then go from there.   She would call me with the next steps.

Once at home, D and I did some figuring on the beta.  I've been trying not to stress about the beta. CCRM has only checked my beta twice.  When I asked my nurse why, and she said that unless it's being done every 48 hours, that it doesn't show anything meaningful.  That it doesn't show the health of a pregnancy.  My local clinic checked betas much more often.  I liked that better.

It didn't seem like 5000 would be possible with the numbers that I've had, even with some generous math.   I wondered if 5000 was some important threshold to be at when you're 5 weeks along.  Was it some deal breaker kind of number?  I've never researched these things very much.  With the embryo donor twins, my betas were sky high.  When I miscarried the embryo from our genetic material, the numbers were strikingly low.

Joy called me later that day, and asked me to come in again on Friday for blood work?  She said my beta was around 2900, and the doctor wouldn't schedule an ultrasound until it reached 5000.

We had a little sigh of relief that something is still going on in there.

Friday's beta will be another piece of the puzzle.  Maybe it will put us at ease, just a little more?

I wish I could just pack up my anxiety away for a little while....okay, forever! Scram, Anxiety! Don't come back! And take your stupid friend Depression with you!

I dream of the day where we see a little heart beat flickering on the monitor.   To see what we've never seen before, and maybe to feel a way that we haven't felt in a long way too.