Working on a plan

Day 7 of provera and still no period, although I guess it’s not technically supposed to start until after I stop the pills.  I still hate the waiting!

I met with my OB this morning and she was wonderful.  They did put us in the conference room, so I didn’t have to endure the exam rooms  (so the mean receptionist came through- I thanked her when I checked out!).  And bottom line is that my OB is willing to do anything and everything to try to help us out with a future pregnancy, even ordering possibly odd therapies that are not ‘approved’.  It’s so helpful to hear her say that, because you hit a point where you wonder if your doctors are really trying to help you as a person instead of just treat you so they can be done with you (or move you off to another doctor because you are complicated with so many losses).

I did hear some extremely frustrating news at my appointment-  I told my OB’s colleague (my OB was not on call when my last baby died) that I wanted all possible genetic and pathologic testing done on my baby (even though we had done PGS and believed the baby to have normal chromosomes).  I wanted a microarray done in addition to the standard tests.  Well, they did attempt to do a microarray and they just confirmed last week that they did the microarray testing on me.  Now, I can understand that things get contaminated when a fetus is only a few weeks along, the fetal tissue is not as easy to distinguish.  But I lost my baby at 16 WEEKS.  My baby was almost 6 inches long.  How could they not get a clean tissue sample for the microarray?  My OB expressed similar annoyance.  So they think now that they do have fetal cells isolated/growing that they can test by the end of the week.  Fingers crossed.

Honestly, I don’t expect to really learn anything more.  I think everything is going to come back normal.  But I would be so angry to lose a piece of the puzzle when we could have had it.  More information and data always feels useful to me, I guess that’s just the kind of person I am.

And no word from Agency S-  ARGH, they are so bad with communication.  Nothing on that front, unfortunately.

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How sensitive should doctors be?

I called my OB’s office today to discuss setting up a pre-conception appointment.  IF I do try again (and this is still a BIG, BIG if), I wanted to understand what medications she would support me being on and how she would manage dosing.  Some things would need to be started far before a positive beta level, so I need to know in advance that we’re ready.  I asked the receptionist if we could meet in the doctor’s office for the consultation instead of one of the pregnancy exam rooms.  I don’t think I’ll do as well concentrating if I have stirrups and an ultrasound machine sitting there when in the back of my mind I’ll be thinking that my baby should be at viability (24 weeks) instead of me sitting there discussing my 8th attempt at pregnancy.  The receptionist was pretty darned rude and said she had never heard of such a request and she didn’t see the point.  I politely asked if she could check with my OB.  Sigh….  Is it really so hard to understand that a grieving mom wouldn’t want to be in a prenatal room to have a sad conversation about trying yet again?

I think most women who have had a miscarriage can point to some moment where a doctor or doctor’s office has been hurtful or insensitive.  I’ve heard some pretty awful stories:

– Getting a call 2 weeks after her D&C to tell her she’s being charged for a missed prenatal appointment that day and reminding her how important prenatal care is for the health of her baby

– Having to sit in the waiting room full of pregnant women waiting to have a follow-up post miscarriage

– Mixing them up with a pregnant patient (asking them to pee in a cup for a protein screen) and then taking it back and saying ‘oh, you’re not pregnant anymore, we don’t care about this for you’

– Hearing some of those awful ‘things not to say to a grieving mother’ straight from your OB (Ie, you’re young, try again- you’ll be pregnant again in no time, the baby would have had a birth defect anyway and you don’t want that)

– Having a receptionist tell you that you need to reschedule your appointment after waiting for the OB for 30 minutes because ‘Your doctor has to go deliver a baby for a new mom right now.  You can wait, she can’t (insert laughter like this is some joke).’

Anyway, what responsibility do doctors have to being sensitive and training their office staff to be thoughtful and sensitive?  I guess I feel that OBs should be held to a very high standard on this.  I think if miscarriage is really as common as they say (1 in 4 women will have a miscarriage) that they should be far better at handling it.  It’s an unfortunate part of working in the field of obstetrics and if they are not regularly addressing sensitivity with their staff, they shouldn’t be practicing.  They should be recommending support groups and making it easier for patients to understand what happened and what their options are.  They should have some times set aside when their office isn’t packed with pregnant women so that those who need to follow-up post miscarriage have a place to go.  At the very least, they could put these women in an exam room right away rather than making her sit there with tons of pregnant women.

The exam rooms should not have a gajillion pictures of babies- is that too much to ask?  My OB has a lot of exam rooms, I think one could easily be dedicated to just gynecological patients (and moms who have had a miscarriage could go there).  Nope, all of them are equipped with ultrasound machines and posters of babies and ultrasounds at various developmental stages.

Another group that I think should be better-  IVF clinics.  I have been into at least 4 different IVF clinic offices that have bulletin boards packed with happy pictures of babies that are the success stories, but how does that feel to the woman who hasn’t had her success story yet?  Shouldn’t IVF professionals be the first people to be sensitive to how a grieving mother or infertile woman might feel?

Am I expecting too much?  I don’t expect the general population to screen out messages that might make a grieving mom feel awful or an infertile woman feel sad.  I know that everyone in the world cannot walk around on egg shells around me.  I don’t expect my Facebook feed to be clear of pregnancy announcements or newborn pictures (but I do try to move them off my status feed).  But I really feel like the medical professionals that work with women should take that extra step to being sensitive to all their patients.  What do you think?  Am I being unreasonable?