Friday, December 26, 2008

The Univ.ersity Hospital, pt 1

C somehow found the OB/L&D check in, which was, of course, under some construction and crazy busy. Apparently, according to the nurses, people wait until after the holiday to go into labor. Of course they do. There were 3 people behind the desk, overwhelmed, and 3 or 4 women in various stages of labor and/or pregnancy and (I think one 12-week miscarriage), completing paperwork, waiting on phone calls.

Despite my automatic admission, there was still paperwork in addition to what I brought, and they had to first find it. It was a zoo. As I was filling out paperwork, my sister called and I handed the phone to C, I couldn't talk at all. My dad had talked to her and she was asking if she should come out. C and I looked at each other, I said, I don't know and one of us (sister or me) just said decide. He said to come out. A had just gotten back from a trip somewhere, but would find a red-eye and would be there in the morning. She's be in touch.

It continued to be a zoo in the teeny admitting office, and some woman who looked full term started moaning and, in tears, I asked C to take me out into the hallway. just outside the door. It was all too much. As he pulled me out, so supervisory nurse ushered us down the hall and said they didn't have a room yet, but set me up in an ultrasound room, at least I'd have some quiet and I'd need another ultrasound anyway.

In relatively short order, OB residents and doctors came in, someone did yet another painful pelvic and examined me. A sweet woman with an eastern European accent, Natalia, I think, did an ultrasound. It was higher quality (of course) than the other, and she thought she found a couple more pockets of fluid.

At some point my dad called (me, or C) and said he had a flight and would be getting in late that night. He told us that A would be here in the morning.

After the pelvic, I had to wait to see the peri (Dr. Joker*), the neonatologist, and another doctor or two, I don't remember their specialties. Dr. Joker came in rather quickly, looked at my file and asked me when he had done the amnio -- 4 weeks earlier, we said. This is not because of the amnio. Practically first words out of his mouth.

He said we knew I was high risk, because the twins and my age, but "This is not your fault," he said, emphatically. "This is not your fault," which, of course, just made me cry. He explained options and risks, and trying to wait, or not. The UH OB had begun this, but wanted to defer to Dr. Joker because he, or course, had the numbers, was the expert. I've seen babies with this much fluid survive, he said. But this is the critical period for lung development, so there would be some problems there.

We asked about the two options the UH OB had discussed with us: exp.ectant man.agement and act.ive man.agement. (Gotta love the euphemisms) He said he'd probably send me home for expectant management, on 95% bedrest (home was better than hospital, he said, fewer germs) with me coming in to see him or my local OB for fluid checks each week until 24 weeks, at which point I would be admitted. Then, I don't remember if he said they'd deliver if I went into labor, or they'd try to hold it off as long as possible.

Chances were not good that I'd make it to 24 weeks, which was just the beginning of viability. There was a 70% chance I'd deliver spontaneously over the weekend (my water broke on a Tuesday) anyway. They'd try to get me to 28 weeks, or, extremely unlikely, 32. He said, no matter what, Jacob's lungs were compromised, and he had little room to stretch and develop his muscles. And there were serious risks with such early delivery. Not to mention risks to me, like blood clots (I already have MTHFR, a hypercoa.gulation disorder), sepsis and other dangerous stuff. I needed to talk to the neonatologist for info about impact on the baby, but chances were very low that if we made it to viability that we'd have a healthy child. Some disability or not.

I should talk to the neonatologist for stats, that wasn't his field.

Active management meant delivery, or d&e. Both choices made me cringe, as at almost 20 weeks, I'd already developed a relationship with the babies; D&E didn't seem like something I could consider. But delivering babies knowing that they would be dead, or soon dead?

Initially, we thought we probably going to have to do "active management", but Dr. Joker made it seem like we had a chance with the expectant. Of course, he gave few numbers or specifics about survival and quality of life.

I think we saw 5 or 6 doctors in those first couple of hours, then we were just waiting for the neonatologist so we could get the full picture and try to make a decision. There was a lull, and C started making phone calls to his family, asking a sister to send the word, calling others. I don't know who called my brother. Probably my dad.

They hooked me up to the monitor for contractions, but I don't know about heartbeat. I was having some pretty mild ones, and the nurse said, sheepishly, that that probably wasn't a good sign. I texted with JK, and got some ice chips or something. C ran down to the food court just minutes before they closed and got some lousy chinese food, but Dr. Joker said I could have some, too.

Since it was getting late and we hadn't talked to the neonatologist and hadn't made any kind of decision, I was admitted to the ante-partum unit, which was really nice (certainly construction had been finished there) and we settled in for the night. The couch in the room pulled out to a single bed, which C used, and there was a nice recliner, too.

I asked C to start making phone calls to my friends, which he did; he'd tell them the news, then I'd get on the phone and we'd cry: B, JK, JH. After many futile calls, we discovered that most of our local friends were out of town; the cats would have to fend for themselves that night.

Around midnight, not even 12 hours after I spoke with him, my dad walked into my hospital room to see me before he checked into his hotel room. He kissed my cheek, hard, the bristles from his white beard pressing into my skin, and squeezed my hand, hard, with his huge one. He'd go get my sister at about 8 or 9 the next morning and he didn't know if he'd see me before then. We talked a little bit, then I ordered him to go get some rest. We'd know more tomorrow.

*Dr. Joker was kind of a smart ass. He knew we were doctoral students and so understood what he was talking about, but he was prone to sarcasm, or well, being a smart ass. I didn't really care for him, but C said he sort of understood him.


Tash said...

I can see how one in your (our?) shoes may not like Dr. Joker in the moment, but even through your writing, I kinda get him too. After the fact I thought about how hard it must be for those docs and statisticians to simply unload on you, knowing that ultimately you need to make the final decision. Not that it isn't hard on us, but that they can't tell us anything definitively. There are no definites in that business, and that's gotta wear thin at some point.

Thinking of you this week. I hope you're finding writing this somewhat cathartic; you're lovely to share all this with us.

Amy said...

The remembering is the hardest part, and yet at the same time the easiest too!

I hope that by putting it all down here it helps you to find some peace.

Thinking of you all.

Newt said...

Oh, Sue, what a nightmare. It's so easy to tell how all this is burned into your brain--the room, worrying about the cats, the Chinese food. Thank you for telling this story, and I hope it helps to tell it. My heart hurts for you and C, and Jacob and Joshua. I wish I could take some of the pain away.

Mrs. Spit said...

I had a Dr. Joker. Trying his level best to make us feel better in the midst of the garbage dump of a situation.

Still with you.

luna said...

remembering with you, sue. this is so hard, reliving it all. hope writing is cathartic and helps you through the other side..

Julia said...

Listening. Having to make these decisions is a terrible thing. Not the kind of parenting decisions you signed up for.
Your dad is a mench.
Love to you as you walk through these terrible days.

loribeth said...

I am glad your dad was able to get there. Having my mother with me was the one thing that made the whole experience bearable for me. (((hugs)))

Anonymous said...

Gone From My Sight
by Henry Van Dyke

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, "There, she is gone"

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices
ready to take up the glad shout, "Here she comes!"

You don't know me but we share a similar story. My heart aches with you and I wish I could wrap you up in my arms and hold you but because we are strangers I will only send you little tid bits now and then. A friend lost their wife today and someone left this in her blog quotes. It touched my heart gently and I wanted to share it with you.
Ms. Jess

c. said...

I had a Dr. Joker, too. I wonder if we all get them.

I found reviewing the events placed me right back there in those far away moments. That every day that had passed took me away from the experience, but putting it to paper brought me right back. And it was accompanied by all the emotion, too, but feeling them was much worse because I wasn't in denial any more.

Following along, Sue, and wishing there was something I could do to make this experience tolerable. XO.

Anonymous said...

i really want to kick dr. joker's ass but at the same time i figure that is what keeps him grounded. maybe that is just his way.
one of the specialists i consulted with comes across the SAME way but he has 100% success rating at what he does...
in either case he could have acted differently...
i have been placed in that place and it is awful...given all the facts but having to make the decision in an increasingly no-win situation.
i am sorry.

Anonymous said...


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小小彬 said...

I love it! Very creative!That's actually really cool.