Monday, October 8, 2007

Frustration

*Warning: This post may turn into a very long, angry babbling rant/vent*

I am really, really upset, and I haven't figured out what to do about it yet. I had an appointment with the nurse midwife today. I'm never too thrilled with my appointments with her, because she is the one, who, as I've mentioned, is a bit too Polly.anna for my taste. I don't think she "gets" me. But, it has always been survivable.

When we arrive, I sense how busy they seem, even though I have one of the first appointments of the day. My last visit they had mentioned they were switching to a new computer system this month. When I get in the room, the LVN doesn't not tell me to unclothe, and I also notice there is no u/s machine in the room. I question her, and she says, "Have they been checking your cervix?" Ummmm...yes, not only my cervix, but every single appointment since the beginning has included a quick abdominal u/s to check on baby girl. EVERY SINGLE APPOINTMENT. The LVN says she will double check and be back. At this point, I don't even hop on to the exam table, thinking some mistake was made and I will be moving rooms.

When the nurse/midwife enters, she says nothing about moving, so I say, "Is there some reason I am not getting an u/s?" NM (nurse/midwife):"Do you think you need one today?" Me (confused) : "Well, I have gotten one every time before" NM: "Well, you just had one on Friday, so I don't think we need to do that today." At this point, I don't know what else to say. I am already feeling a bit speechless. Yes, it is true I had one on Friday, down in radiology, but I have been having those about once a month since 17 weeks, and that never affected me getting a check from the doc or nm before.

She checks on baby girl with a heartrate doppler. (which, I did at home right before I came) and measures my abdomen. At this point I am feeling more unsettled. For this, I drove here? Heck, I could have done most of this from home people!! I thought I was at the HIGH RISK office! She hands me my kick count card and we review doing that.

Now, I had mentioned here before how I was starting to feel more ready to move my appointments closer together. I am now 27 weeks, my appointments are still 2 weeks apart. Fine, but considering they get booked up fast here, I want to start discussing a plan for more watching. I am entering the 3rd trimester, when I lost M, with absolutely no cause of death. My plan is to be as diligent as possible, especially now.

The appointment is starting to end. NM: "Any other questions?" Me: "When do think we might be moving the appointments closer together?" NM: "Oh, probably around the time we start NST's which will be up to the doctor. Has she told you when that might be?" I have a slight sigh and eye roll here, because I don't understand why I have to tell the nurse what the doc said, and vice versa. This has happened once or twice before. But I answer, "Well, she said around 34 weeks, but I was going to revisit that with her, because that feels late to me" (one of the reasons I was a wee bit upset my last appointment) NM: "Hmmm...Yeah, I would say a bit earlier than that." Okay, point in your favor, nurse, but you have already made it clear that doc is the "decider", so I am not sure I should put your opinion in my hope chest yet.

At this point, I am feeling very frustrated, this is now the second appointment where my distinct impression is that "everything is going so well" so they can back off and let nature take its course. This attitude does not sit well with at all. M died when "everything was going so well" Nobody indicated anything was wrong with him, the placenta, NOTHING. Everything was perfect. He just died, 3rd trimester, 5 weeks before he was due. There was one thing, but I have been told over and over and over that this had NOTHING to do with his death. You see, they thought M had achondroplasia. That is the most common form of dwarfism. We see people with achondroplasia walking around every day. There is a show with people who have this on T.LC. They don't die before they are born. They discovered this when M measured small on a u/s. Come to find out, it was just his limbs were shorter than average, which is what this dwarfism is. Average torso, short limbs. This was a few short weeks before his death. They said they wouldn't make the diagnosis for positive until after his birth, but, they were pretty sure. I had nothing to worry about. I remember the doc even took out the measurements of his limbs and then averaged his size, and said he was fine, not too small at all. Yes, he might have some issues after birth, but as far as the pregnancy goes, NOTHING was wrong, come back and see us in 3 weeks. I remember not feeling too comfortable with that. You tell me something is up with my son and I have to wait 3 weeks to check on him again? But I didn't protest, I believed them, went home and read all I could, prepared for the "little person" that was entering our life, cried with worry and fear, became excited at all I thought he would teach and show us about being "different". My next appointment, he was dead.

After his death, they decided they were right, it was achondroplasia, and had nothing to do with his death. The likelyhood that I would have another child with dwarfism was small, since it was random gene mutation. I tell you this partially to explain my frustration at events that have happened since. I cannot tell you the number of times doctors talk to me about M's dwarfism, but not his death. When baby girl kept measuring average, I was to "celebrate" her average size. See? they said, you don't need to worry about that. BUT....I wasn't worried about that. I can't understand why they focus on that, but not the fact that he DIED? I have had to numerous times correct them, tell them, my concern is his DEATH. I have been told over and over the dwarfism had nothing to do with his death. I don't understand why the docs like to talk about that and not his death. My theory is they know more about achondroplasia than stillbirth, and that is why they like to talk about it. What is there to say, when really you need to admit, YOU DON'T KNOW? Keep it to topics you can show off your degree with.

Aaahhh...but I wander....a lot. Back to where I was: feeling frustrated. So at this point in the appointment, I express to nurse basically that we are entering my "danger zone" and I would like to start making plans to maximize my care and watch carefully. If only M had been born early, he probably would have survived. So if there is even a sliver of a chance that by watching more we may catch somthing going on before it leads to death, I am all for it. Understand? I guess she didn't. I don't think she knew what I meant at all, though, asking my mother later if I was clear, my mother said, "I know exactly what you were saying". Want to know what NM said? She gave me a lecture on how of course anniversaries are hard, they are bound to be emotional, and I will feel much better after I pass my "scary point". (What? Ummm...my scary point is so close to the end, I don't see that happening) She then continues to tell me to think positive, think positive thoughts, be happy with all that is going well. She says, "this baby is already bigger than your last baby at this time was, see? that is a good sign, you need to think of that, how positive that is"

End of conversation, I'm speechless, and shut up. Possibly wrong thing to do, but I decide I CAN'T get through to her, have tried, it is pointless. Plus, in my mind, I am just going to speak to the doc about all of this because she is the "decider" after all and seems to "get" me more.

End of appointment.

Here is what really made me mad about the last part. Wait a minute, wait a minute, are you now telling me that M was too small and that had something to do with his death? NO ONE has ever said that he was too small. Besides the dwarfism of course. His weight was FINE. My last appointment the doc mentioned his dwarfism in much the same way. Are they just babbling or what? NO ONE has ever said anything was wrong with M. ANYTHING. So don't sit there and tell me I should be glad baby girl is bigger or doesn't have achondroplasia like that means I can go home, put my feet up, and start buying baby things, cause she isn't going to die! Because according to you people, NOTHING was wrong with M's weight and his achondroplasia has NOTHING to do with his death. How dare they use these issues now to try to reassure me, tell me I shouldn't worry. How dare they. By the way, I know when I ovulated with baby girl, it was VERY early, it makes sense she would weigh more. So, if my next baby is 15 lbs. does that guarantee life? Damn, I'm pissed.

After the appointment, I decided I would write down my issues, make sure to discuss them with doc, and so on. But I feel defeated. I feel I can't change their attitude. But how can they think everything will be fine? I lost M later than I am now. Think, people. I am also questioning my decision to not pursue some of this with the nurse herself. I don't want it to seem I am "tattling" to the doc. But at the time, I truly didn't think I would get anywhere. I am supposed to keep alternating appointments with doc/nurse, but, am questioning that too. Is it too demanding to insist on the doc the rest of the pg? I want to get what I need, explain my side without making my relationship with either of them adversarial. And there lies the problem. How to find the balance. But I will do ANYTHING to keep baby girl safe, I don't think I can let them take a "ease up" attitude. I still can't believe she said that about weight. M's weight was fine, nobody said it was not good enough, either before or after his death. I am so angry that she used that as a "reason" I shouldn't be worried.

For a few hours after leaving, I was all fired up, determined to be more assertive, make a list, address everything with the doc. It must have started to wear on me, or maybe my emotions just caught up with me. I have spent the rest of the day, fighting tears, even at work. Maybe it didn't help that I talked to 15 year old girl at work today, pregnant, thinking how she doesn't have these worries. I want baby girl to stay alive so badly, it consumes me. As I was driving home, I finally let the tears flow. I almost feel I want to have the total emotional breakdown, to let it out, complete with screaming and pounding of the fists. But it is just tears tonight. Mr. G is working overtime, so I came home to an empty house, opened M's memory box, and cried. I haven't done that in a long time. I still feel teary. Wish I could just sob and wail sometimes. That is n't really my style. The good news about tonight is the feeling that baby girl must sense something, she has been kicking up a storm, reassuring me. After my appointment today, I went into the bad place, where I start to be SURE she is going to die. So, this is a good night for her to be active.

I feel like a powerless child. If you made it through all this, all my ranting, all my anger, thank you.

7 comments:

Catherine said...

Do it. Assert yourself and tell them that you will only see the doctor from this point forward. Schedule ALL your appointments now. You do it. Decide you're going to be seen once a week or twice a week or whatever will make you feel comfortable, and schedule all the appointments now. Take charge.

There is NOTHING to be gained by being passive about this. Absolutely nothing. They're not going to refuse your money. They're not going to refuse to treat you. So you do what YOU need to do to feel reassured. Your mental health is just as important as your physical health.

Screw the midwife (pardon my language). Thinking happy thoughts doesn't do jack squat for bringing home a live baby, regardless of what feel-good crunchy-granola crap she subscribes to.

Yes, I just had a run-in with one of these midwives too (last week). I will NEVER see her again. I simply cannot live in her world. And if she even comes into my world it might kill her and all her idealistic notions of pregnancy and childbirth. And I don't want that. I'm sure she is helpful to other women. Just not for me.

Good luck!

Beruriah said...

Ms. G your concerns and complaints are incredibly coherent and reasonable. If M's achondroplasia had nothing to do with his death it is incredibly offensive that they use Baby Girl's "normal" size as a measure of comparison and comfort. If they think it did play a role, they need to freaking be honest. My thought is the NM is just clueless and trying to get through her workday. Too bad. You should get the care you need and want to make it through the next difficult weeks. I'm so angry on your behalf. I think you can and should bring up your concerns with the doc - it won't sound like tattling - you have concerns that need addressing. Argh. I'm so annoyed on your behalf! Catherine's advice is best - make all the appointments you want. And call them whenever you want.

Yay for Baby Girl kicking lots! I hope she continues to cooperate.

Monica H said...

First of all, I am always up for reading super long angry posts, don't apologize for that.

Is there any way you can NOT see the NM? Just tell the doc you prefer to see her and the NM are not on the same wave length. You are not tattling and you have every right to request additional appointment and u/s if it eases your fears. They should understand that- one would think anyway. Although your NM seems pretty dense.

As for the achondroplasia, that M had, maybe the doctors choose to focus on that because they are uncomfortable talking about death and losing babies. On the other hand maybe they enjoy talking about it because it is not as common. I don't know. I'm not trying to justify their actions, I'm just sorry you are having to deal with all this right now.

I completely agree with Catherine when she suggests scheduling the rest of your appts. Just make sure when you do tell the person scheduling that you specifically want to see your dr. and not he NM.
Then ask if all those appts. include u/s as well.

Is there any way someone you can trust and has similar views as you could go with you to your appts? If you forget something or if you need something said or done, they could step in for you. Just a suggestion. I hope everything works out for you. Keep us posted.

niobe said...

I think that medical personnel in general are just as clueless and uninformed about stillbirth/neonatal loss as your average everyday clueless person. Because most babies don't die. Even most babies in high-risk ob practices don't die. The doctors and NMs often just don't get it and tend to say and do all the wrong things. And the NM you saw seems particularly dense.

Which is a long-winded way of saying that I completely agree with the previous posters. You should do whatever makes *you* feel the most comfortable and whatever is most helpful for *you.* And it sounds like that would be scheduling all your coming appointments with the doctor, not with the NM and scheduling as many appointments (including ultrasound) as you feel you need. Having a pregnancy after a loss is hard enough. You have a perfect right to do whatever is necessary to make this pregnancy a little easier and less stressful.

The Nanny said...

I have no experience with any of this, so I can't empathize, but...I am so sorry all of this is going on, and I am thinking about you. I hope somehow things get better.

Carole said...

I am so sorry that they are not listening. I would insist that all the rest of the appointments be with the doctor. You have every right to be worried...and they should be more accomodating.

Thinking of you...
~Carole

Lori said...

I am new to your blog, and your story, but I have appreciated your comments on other blogs I read. I wanted to know more about you, and already you have gotten my dander up with this post! I haven't read anything else on your blog yet, but I feel your indignation and incredible frustration. I felt frustrated and angry just reading about this appointment, and I can't imagine living it.

Well, actually I have sort of lived it, because I know what it is like to be in a high risk practice only to have the doctors treat you as though they can't really understand why you are even there. For me, my loss was always dismissed as a "twin thing" and so the fact that my sub. preg was a singleton was supposed to completely reassure me that all would be fine.

I think it is terrible that they keep pointing to size and weight as a predictor of a good outcome. First, it's just silly. And, as you said, it's insulting to your son. It makes me feel as though they are trying to diminish his loss, which I'm sure you feel as well.

I am just so, so sorry your VERY valid feelings are not being treated with the respect and attention they deserve.