Wednesday, 16 April 2014

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. 


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.  


  1. ughhhhh... I'm so sorry, Julia! What a MESS! I'd be SO pissed! I hope everything goes okay with Dr. Highrisk and that the D&C is successful. Thinking of you!

  2. This is angering, I 100% agree. When I had my first miscarriage in November 2012 I was in shock with all the crap that goes along. From the outside looking in I always thought a miscarriage was a sad time/heavy period-I didn't realize all the horrible heart breaking decisions that go into it. I too had a D and C. My heart goes out to you. I'm glad you were satisfied with CCRMs responses. We have some embryos on ice (5 day blasts) and I too have gone back and forth with wondering if I should pay to test them just to save future heartache, but even then there are not 100% gurantees so I always get stuck. Hugs to you through this not-fun-at-all-time. I agree with you, the sooner, the better.

  3. this is sounding like a gong show. I'm really sorry that after all that extreme amount of salt in your wound, it seems the salt shaker is pouring out more pain and irritation.
    Dr. Highrisk may surprise you. I hope so. And in any case, he'll be far better than any random OB at emerge to perform the D&C, and potentially leave you scared. At least that's what I'm hoping.

  4. I am very sorry you are having to suffer this loss, and all of this aftermath.

    I know you want answers, more pieces to the puzzle, to move forward with confidence.

    I agree with your husband, and I really support him in his ability to step up and support you and help make plans. you need that now, and it ultimately helps him with the entire grieving and IF process. the more involved he is, the better it is for both of you to make decisions and support each other- I know you know this already, I am just impressed because many men do not know to step up like this.

    how many embryos do you have frozen?
    what are your thoughts at this point on using a GC?
    are you willing to do another FET? with 2?
    I know that some CCRM donor egg patients have had their DE embryos CCS tested. just because they say it may be unnecessary does not mean you can't ask to have it done.
    I can't believe Dr.G told you 5%, ever. it must have been a misunderstanding or gotten lost in the translation, or he was drunk. their is never a effing 5% chance of m/c... doesn't make any sense. DE at CCRM has great results, but even their published results never even touch the 95% success rate.

    I am so sorry your choices and options are so sucky and frustratingly limited. it is really important to avoid scarring if you opt for a d&c. I had a d&c done at 6w5d from a trusted experienced OB in the hospital and the results came back as normal girl. was it me? was it baby? lab error? there is always lab error. chromosomes can only tell you so much- there can also be other issues why the baby could not develop normally. not having to do with you.

    I guess it all comes down to how much money you have to spend, how much fortitude you have to continue, and how attached you are to any particular path to parenting. this is the totally unfortunate stark truth. what is the path of least resistance? and can you afford it.

    the best option is DE in a GC. $100k. can you do that? this is what we had to ask ourselves. we did it. it did not end up being 100k, but you have to have that much set aside in case.

    at this point, I think you should go with what has the BEST chance of getting you guys a baby. our GC had a bring-tears-to-my-eyes-because-I-don't-know-if-I-am-laughing-or-crying pregnancy, while all of my own were spectacular failures. it made me realize how much a difference taking my body out of the equation made. and in the end, there was the baby... how it got there didn't really matter any more.

    I hope you have the best possible experience with the high risk doctor, and with your re-group. I wish there was more I could do for you except to leave a comment.

  5. Oh my Julia! Such a headache, I can't beleive they couldn't help refer you to someone who can do a simple D+C. One option would be to consider Planned Parenthood -their doctors are very experienced doing D+C (they do a lot more that regular GYNs) and can send products for path and chromsome testing and the procedure is rather expensive with their rates.

  6. What a mess! I'm so sorry that they dropped the ball like that.

  7. What a headache for you in this already difficult time! I'm sorry. Thinking of you.

  8. Why do things have to be so hard when they should be so much easier? I don't have any advice, but know you guys will make the best decision for you. I hope they can find some answers so you will have success on this next transfer.

    Always thinking of you and sending so many thoughts your way.


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