So why do I want to cry? Hard.

Questions and thoughts

Have you found it difficult, since blogging, to get ideas down on paper? I mean with a pen and a notebook? I used to be a har.d co.re long hand kind of girl, and now I just feel disorganized. Thoughts?

*****

I have felt extremely disconnected since my computer bit the dust. The black.berry is great, but not for posting or commenting much.

Anyone have any recommendations? I was using an excellent iB.ook that lasted 4 and a half years and I may go with the next iteration of it, but it's a lot of cash to lay out at once, even with the student discount. How about those Net.books, The little computers? They're very cute, but I may be too old and decrepit to type and or read that screen. Or other laptops? Del.l, etc.? Having been a Mac girl for a while I don't know the brands or reputations. I have Consumer Re.ports, but not the patience to go through the site. I welcome all comments, suggestions and advice. Well, the nice ones, if you know what I mean.

*****

Well, I've been on an emotional roller coaster since my conversation with Dr. Mensch, but I'm beginning to feel like maybe we can do this again, and.... well,..... I've gotten that little jump in my chest when I think that we might have a living, healthy baby after all.

I go back and forth about what does he know vs. the symptoms were close to other things vs. REALLY wanting to believe that a TAC could solve all our problems. But it seems like a miracle device and I'm wary.

Has anyone worked with Dr. Mensch before? He's based at U of Chi.cago and has done about 500 of these TACs (transa.bdominal cer.clage). Very knowledgeable and passionate on the phone, seems very accessible, great office staff. Excellent credentials. His last name begins with an H. If you've worked with him before, what was your experience like? Do you have any advice for working with him or any questions I should ask him? Warnings? Concerns?

Anyone else with IC get a TAC with another doctor? I'd kind of like to talk to others to see if they have similar responses. Any advice in getting one or not?

Thoughts, please?

*****

It seems I'm going through all the grieving all over again. Not reliving it, well, yes, reliving it, but with the perspective of IC, rather than "oh, what a terrible, tragic, fluke" and feeling no control, but totally responsible. Also, hearing this doctor say what he did about how we absolutely did the right thing in inducing, saving me from potential infection and my baby from a short, painful life of severe disability.

Letting go of Jacob now seems like an inevitable thing, as hard as it was, a safe and kind thing. I don't know, I can't say it right. The doctor didn't really address the loss of Joshua, but aside from assuming that my cervix probably was responsible for his demise and the collapse of the cranial structures (that and the muscles of my uterus, just from day to day living), I'm finding just a little bit of peace there. Just a little bit.

Somehow, with one conversation, I have been, well, absolved. Our loss has gone from no answers, from my personal failing to the failing of a part of my body. Talk about a paradigm shift.

And when I off-handedly said that every doctor we worked with mentioned crystal balls, he said, briskly, "what? no, no crystal balls. You don't have to go through this kind of loss again."

Now, we all know that anything can happen, but I can't tell you the comfort of working with a doctor who doesn't shrug his shoulders, and talk about crystal balls.

Believing ** (mostly)

Thanks, everyone!

And for what it's worth, EVERYONE has been saying it's not my fault. One of my greatest skills is not believing good things about me. Or not-bad things. I think that it's having some expert completely uninvolved, uninterested saying it, maybe, that helps.

I thought I had this under control, but looking through the records brought everything up. I still don't know what happened with Joshua, but right now I can live with the question.

Not that I don't/didn't/haven't appreciated all the support. It's all stuff I needed to hear. Need to hear. From people who love me, who are involved. I couldn't have gotten this far without you.

I wanted to believe. I wanted to believe you. And C, as he hugs away my meltdowns, and my shrink. And the grief counselor. And, yet, even as I type this, I am uncomfortable believing.

It's just part of my neurosis to be resistant. I could list a dozen other things, good things I didn't want to believe about myself. Yes, I'm just that neurotic. And this is SO huge.

I told the nurse at my RE's office (I called to talk to him about Dr. Mensch) that with IC, I feel like I can believe it's not my fault. And she said, "Sweetie, it was never your fault." And I couldn't talk for the tears.

**And yet...

Incompetent

Incompetent Cervix.

Spent an hour and twenty minutes on the phone, and according to my symptoms and history, Dr. Mensch thinks my loss was a case of Incompetent Cervix. In other words...

Not. My. Fault.

He was horrified that no one had given me a PPROM diagnosis beyond "fluke" and AMA with twins.

Much of the conversation was him explaining the Trans.abdomin.al Cerclage and the Va.ginal Cerc.lage and his, well, passion for the TAC. Part of it felt like a sell job, but, god, he was so passionate about not putting women through repeated losses when the TAC could help them. And he's worked with/taught my RE.

We certainly have research and thinking to do. Haven't really discussed it with each other yet, C and I. And more opinions and research. But there was something amazing about someone with his credentials, his passion and experience tell me that there was a (physical) reason for losing the boys. He never said it outright, but he said it for over an hour: Not My Fault. Not saying it because I'm crying, or because I'm perseverating or because he loves me.

Last night I was thinking, I'm going to have to carry this guilt around with me for the rest of my life.

Maybe not.

Peeking in windows and listening at doorways

I haven't completely disappeared, and I have been keeping up with you folks, as I'm able. I'm sitting on the floor of the living room, typing on C's computer as the room brightens through the east facing windows.

Wanted to share that I have a conference call with a doctor in Chi.cago, the one who put in my sister's cerc.lage and is supposed to be a real mensch. We were supposed to talk yesterday, but he had an emergency so we rescheduled. It surprised me how disappointed I was. Frustrated and petulant, since I had built my day around this one hour span of time, where, hopefully, I might get an answer or two, or, at the very least a kind word from a knowledgeable doctor.

So we are rescheduled with Dr. Mensch for 10am today. I am not looking forward to it in the same way I was yesterday, and really that's my fault. I pulled out the 2 1/2" binder of medical records from the 10 days of nightmare and started googling. I don't know what on earth I was thinking. This doctor, Dr. Mensch specializes in the trans.abdomi.nal cerclage and IC. And, apparently, PPROM can be caused by IC. Who knew? I've been researching for almost a year and a half, and never saw a word about this.

But then I looked up collapsed cranial sutures, because that's what the ultrasound said Joshua had when we were first admitted to the local hospital. I had heard that it was a result of brain death in a fetus, but what else? Apparently, the fetus is usually dead 2 days or more when this happens. 2 days or more. How long was he dead? What did my doctors miss? What did I miss? So what caused the death? Not IC, even I know that. Was it the shots I missed? just the severity of my "hypercoagulation disorder"? Was I leaking without knowing it for so long he suffocated?

I know, I know, don't torture myself. But all I can think is that my body was trying to deliver Joshua, and Jacob was lost in the process.

And it was all my fault.
*****

Minor breakdown (haven't had one like that in a while) before doggie training last night, but luckily Stella was relatively cooperative, or maybe it was just the Klon.opin and golden Or.eos I had for dinner on the way.

Part of me feels like this call is a waste of time, because I'm pretty sure I don't have IC, though I do have other questions for Dr. M., things like insight into what might have happened, what are the chances of it happening again (as much as I hate them in this domain, I can't resist) and if I were his patient, what kind of protocol would he follow to try to ensure that I actually get a live baby out of this.

Supposedly, this man is second only to Je.sus in his brilliance and saintliness (does that make any sense? I'm just a bad Jew, please forgive me if this offends), so I assume he'll be kind, but, unlike yesterday, I don't have a lot of confidence that I"ll be able to keep it together. Luckily it's a conference call, and C can pick up where I drift off sobbing. Isn't hyperbole fun? What's hyperbole?

I'll take my morning meds, and drink my iced coffee and pet Stella, who has her head leaning slightly against my leg, and I'll man up. I have an hour and a half to get it together. Then another two hours to get to class. Luckily I'm not the one lecturing.

I'll keep you posted, and thank you for hanging in there with me.

S

Of course

My computer quit on me. It just shut down. Won't turn on, won't turn off.

On the other hand, I have a call in to a great doctor for a consult. Just waiting for him to get out of surgery so we can set things up with his assistant. Nervous, but good nervous. I think. Just need to be able to keep my head together when the time comes.

I know I've been quiet. More soon, though.

Flux

I'm so tired of it. I can't even put words to it.

Time for bed.

Sleep will help. I hope.

Who am I kidding

I'm no writer. I'm a memoirist of death.

Trauma. Grief.

Poetry, even journaling is kicking my ass. And as I feel better, I simultaneously feel worse. Living the cliche, the better I feel psychologically, the farther I am from my boys.  The grief becomes easier to carry, as I tell people, in truth, it's because they are farther and farther away. 

No offense

I hope I didn't hit any nerves or offend anyone with my last post. I'm just trying to untangle this jumbled mess inside my head. I'm really wanting to have another child, but I think I'm rationalizing something because I don't think I can bear another loss, and I don't know if I trust doctors anymore.

Tell me about your best and worst moments as parents, if you have living kids, or their best and worst moments.

Is it worth it? *edited *ps

Having a child. Risking the loss.

The hassle, the money, the lack of sleep, the worry.

Everyone tells me that the love and the joy of watching your child grow up makes it worth all that.

I guess I'll know when/if the fear of the loss and hassle are outweighed by the anticipation of love and joy I recall having. So intense I didn't even realize it at the time. But is the fear more? Is it a cop out to say no, I'm done? I'm done because of the fear?

Or, screw the hassle: I want it, because of those that happiness. Where does that come from, that joy?

When did you know you were ready? Or that you were done? What told you so?

*Edited: This is not to say that people choose not to have children because they are a hassle. I am fully aware that people have wonderful, fulfilling lives without children. What goes into the decision? Is it a matter of coming to terms with it or simply knowing, we are done.

And when I speak of fear, I am strictly speaking of my own.

*PS Tash said this all much better on her blog. Check it out.

Sea Sickness

When I was living in Boston, I took a ferry with some work friends to Province.town for the day. There is a fast ferry that takes about an hour and a slow one that crawls in in 3 hours. Well, we missed the fast one, so we had to take the slow one. Unfortunately it was a gray, windy, coolish day on the water, and that ferry carried us up.... and down.... every swell and ebb. Even the regulars were commenting on how rough the waters were. I was praying to throw up, and fantasizing about renting a car to drive the 3 or 4 hours back to Boston, anything but getting on the water or that boat again.

It's a Worcester day today, in the 40s or 50s, breezy and chance of rain.

:::::

I haven't done much writing, but lots of thinking. I was very optimistic last week. It was thrilling. I was full of thoughts of my future, of coming back to writing. Of perhaps using my experience and my words not only complete my program, but create something, I don't know what, but maybe something that would reach someone, the way the DBMs have reached, and comforted me. Told their stories. Abided with each other. Maybe something that would include them.

For the first time in, probably...years, I have felt like a writer. An insecure one, of course, holed up in her room, laptop closed and glaring white and blank. The notebook with pen clipped on, a fast-writing pen, calls to me, but I am ambivalent.

At the end of each day, though, I was anxious. Perhaps the new drugs. More likely, my own neurosis.

*****
My sister sent me the doctor's name in Chicago, and said she'd be happy to pave the way when we're ready. Yes, I know, just asking for the info is a step forward. I've made some lists of info about me, our history, and questions about cause. The one list I didn't make was the one that asked how this guy would support and or maintain a pregnancy with me to achieve a child. Or if I should even try, physically.

This weekend, I had this image of a little tow-headed child, maybe 8 or 9 months, sitting with his legs sprawled, investigating a toy. (Actually, it might have been a girl, with a mop of white-blond hair). It wasn't a dream because I was awake, it wasn't a wish, because it wasn't conscious. Just popped into my head. It was just there for a moment; I tried to look closer, but it faded, like trying to go back to a dream.

I've been getting that hopeful twinge of trying again, though we are not ready. Just every once in a while. These little steps I take, toward school, toward consults. Then I get scared. Panicked, nervous. I've shared some writing and wonder what the reaction is. I think I'm fooling myself.

*****
My sister is 24 or 25 weeks as of yesterday. Edge of viability. She was in NY, staying with my dad. No one brings it up unless I do. Which is good. But I do feel so outside of things. I don't know what else would expect. They are being respectful to me and my pain. Dad mentioned that Grandma is happy to see her, but doesn't like that A is traveling. Considering the cerclage, she is safe to travel for a while, I think.

Hearing that though just made me so sad. Really really sad. It's no surprise, but... well I guess the intensity of it is. She has a real chance at a child, though this is not a conversation she will have. She refers to knowing about too many things that can go wrong. I agree. She will have no showers, no furniture in the house. Not until there is a living, healthy baby there first. I don't blame her.

I guess I just envy her.

:::::

At the end of that day, I was feeling a little better, and with some dram.amine, we took the fast ferry back to town. The drugs made me sleep, sort of, and when we got there, C and my roommate were there to greet me, my legs were rubbery, and my head woozy, but I made it.

Haven't been back on that boat. Yet.

Back at the beginning

Back to no words, only tears.

But that's misleading. I've been doing better. Sociable, the class I co-teach is going well, the animals are (mostly) getting along.

I have a list of things I wanted to talk about, write about, but for the life of me, I don't know where to start.

I was feeling so good, in fact, that I call my RE's office to ask them to call in a 'script for the folic acid supplement he had the pharmacy compound. I bought vitamins and took a couple. I asked the nurse about the yoga class they offer, and bought a new mat. My RE is doing accup.uncture, too, now, so maybe I'll try that as well. Craving vegetables, occasionally, food that is better for me. Talking more with C about trying for another child. Thinking about consults with doctors.

There is a confluence of events or conversations or activities that can explain this, but I don't know where to start.

I'm thinking about writing -- or editing -- a book. Maybe connected with a dissertation, maybe not. I hesitate to academize this too much.

But something I have learned, as I shared my story with my brother (mistake, but learned from -- we are better) and my friend S, and one of my profs. I didn't know why I felt compelled to share "the story" with her, what happened during those two weeks, but I did it anyway. Her response was sensitive and warm and thoughtful: just what I would have expected, had i expected anything.

I told my sister about it, and she asked me what I was hoping to get from sharing this story -- pity, understanding, conversation, something from others, a free pass... I don't know what I was thinking, honestly. I'm still processing it.

Something I have learned from this, though, is that I feel lighter, somehow. Sharing the events, the grief, my own process.

And I can't explain it, though part of it I instinctively knew, from writing this journal, sharing with others who get it because they've been through it. But why put it on others? Why should that help me feel lighter?

I can't explain it. Not yet.

But I'll take it.

*****

Thanks for sticking around.

Poetic

The email address to which your comments have been going has been disabled. I just found this out, and assume it has been so for a few weeks. I found your comments on my blog, and thank you humbly. I'm working on a new anon email. If you happened to send me an email during the lapse, just leave a comment in this post with an email so I can get back to you.

I'm sorry for the inconvenience.

S

*************** UPDATE*****************

I've updated my anonymous email and am in the process of updating my profile with it. Sorry, again.

Still Here

It's been kind of weird. Things went poorly with the abilif.y, but as I've come off it, (and possibly adding wellb.utrin this week), I've been feeling a change which I'll write about. I haven't been reading or writing or commenting. I have been thinking about you all though and the positive impact this community has had on my life.


Today is the day in Busted Babymaker's pregnancy with Toodle where she lost the Doodles. If you haven't already, I encourage you to drop by and send her some encouragement. My sister has said that her anxiety eased a little as she passed her loss milestone. I hope the same happens for Busted. She deserves to enjoy the remainder of this pregnancy, as much as she can.

I'll fill you in on me and hope to catch up with you and my 224 unread posts on Go.ogle Re.ader. Thanks for hanging in there with me.

S.