Saturday, December 27, 2008


It's about 5:00 pm where I am. A year ago, we were still waiting to talk to the neonatologist.

My dad stopped by early in the morning, maybe around 8 or 9, on his way to pick my sister, and (unexpectedly) her husband upon their arrival on the red-eye. BIL can be very sweet, but he's pretty awkward and needy when they visit. They arrived late morning-ish and we filled them in on what had happened, what we'd found out so far. C, I think, had continued to make some phone calls, but my sister has this energy and humor that call fill a room, so there was some busy-ness while we caught up on things and waited for my ride to my next ultrasound. Dr. Joker had said that day to day, there wouldn't be much change, but I had to see for myself.

One of Dr. J's associates came by with a resident and some other medical person to check in on me. When she found out the hospital I had been transferred from, she asked about a Dr. Sweetie Pie, who was, indeed very sweet, if ineffective and they remarked that he had done his residency at this hospital a number of years ago. He wasn't my regular OB, but I had seen him during one of my IV fluid hospital visits. I mentioned Dr. Coldfish, who had been on call when my water broke, and they said "Coldfish? Didn't he retire a few years ago?" Yeah, that instills confidence.

Finally around 1 or 2 my ride to my ultrasound arrived. I assumed I would be going to an ultrasound in L&D or OB or ante-natal, where I was, but I was mistaken. This woman took me on what had to be a 10 minute walk through tunnels and elevators and hallways to the outpatient OB Clinic. This is the no insurance clinic, the special cases clinic, the bring your 2 or 3 small children clinic while you get your prenatal exam with your 8-month belly in my face while I wait for 20 minutes to get my ultrasound. No, I wasn't a special case. I was just waiting to see if my remaining child was still alive and if there was any fluid around him so maybe I could make it to the bleeding edge of viability. No biggie.

The radiologist took us into a darkened room and began. She confirmed that Joshua was gone. There was some word that she used, like deceased, but not, that kind of jarred me. It wasn't mean, or harsh, but maybe just...medical. She measured Jacob, his good strong heartbeat, and pointed out, "oh, looks like he's practicing breathing, there, you can see it." (Gosh, thanks, that's great.") She looked for pockets of fluid, and there may have been a bit more, but nothing significant. Besides, every sonographer is going to get a different result. She called the doctor and he essentially told us what we knew.

After we knew for sure that Joshua was gone, I kept hoping I would go into labor. Or that finally an ultrasound would show that Jacob was failing or, forgive me, gone. Every breath hurt, knowing that we had to make this decision, deliver or try to wait it out. I pleaded with nature, with my body, to make the decision for me. Once again, my body refused to cooperate.

The wait for my ride back to my room was shorter, though it felt interminable. This huge black man pushed my wheelchair so my hair was blowing in the breeze, and he made pleasant small talk with us. The trip up was probably half the one down. I was probably gone and hour, and filled in my father, sister and BIL on the non-news.

It was probably 3:30 or 4 and I was just wanting to go home. Last word from the nurse was that neonatology was getting slammed, and they just didn't have a doctor available yet. C was getting anxious about the cats, and it was getting frustrating just waiting.

My dinner came around 5 and the nurse got the OB resident to see if she could answer some of my questions, which she did, as much as she could. Birth at 24 weeks, with little fluid would mean underdeveloped lungs, risk of interc.ranial bleeds, necro.tizing entero-colitis, CP and a bunch of other horrible things. If he survived birth. Not to mention risks to me in waiting. Our chances of having a sort of healthy, non-severely disabled baby, even if we got to 28 weeks were minimal, maybe 5 or 10%, tops. But I would have to talk to the neonatologist for more information and statistics.

We thanked the resident and she left her card. Once the door was shut, my sister and I burst into tears at the same moment. I'm sure I've mentioned this, but A is all about control, and it takes a lot to get her to cry at all. This was really, really bad. It seemed our choices were dwindling.

After I picked at my food, maybe 6 or 6:30, we called the nurse in again. I was finally like, screw this, I just want to go home. I'll get the neonatologist on the phone to ask questions. A pushed back. She said, do you want to see the doctor? She said, can we just wheel her down there so we can get some questions answered? A said that she understood those patients needed the doctor, but all we needed was a few minutes. The nurse, of course, was getting frustrated, as were we, and she said she would push to get someone down here, but couldn't promise time.

About 7 or 7:30, finally, a haggard, sad, tired looking doctor in blue scrubs came in and told us she was a neonatologist here to try to answer our questions. (They had been slammed with a lot of births and a lot of loss, I guess.) The picture she painted was bleak. Birth at 24, 28, and the dream gestation of 32 weeks, all severely, negatively affected by the lack of fluid to move around in, and to develop lungs in. Words like pulmonary hypoplasia, pulmonary dysplasia, brain bleeds, blindness, deafness, cere.bral palsy. If he survived birth. Depending on when that was. Likely immediate placement on a ventilator, depending on his birth weight, and something else, apgars? How he seemed at birth. Sometimes babies look great at birth and do poorly; sometimes they look bad and wind up doing well. She confirmed the 5-10% health of our son, should he last that long and survive birth. This is all not to mention the risks to me.

She painted better pictures if he survived to 28 weeks, or to 32, but there would still be serious risks, and particularly pulmonary, as 20 weeks was the critical period for their development. Also, with little fluid to move in, he would likely be at least moderately physically handicapped because he had so little room to work his muscles. Barring infection, blood clots, placental failure or abruption, or spontaneous labor.

More questions. A business card. She was gone. We packed up and headed home ourselves, distracted, tired, and getting lost, but eventually home safe. C was pretty sure he knew what we needed to do, but I wasn't. I needed to time. I wanted time for my body to decide for me.

Looking back, I think I couldn't bring myself to give up on this pregnancy, this little boy. 5% is 5%. I hadn't gone into labor, as statistics said that I would, what if I was one of the few who could make it?

We went home to broken dishes everywhere. Cats freaked out at the top of the stairs. One of the supports on one of the shelves broke. Our gorgeous huge Pot.tery Barn wedding gift dishes shattered and scattered across the kitchen floor. There's poetry in there somewhere.

And so, with me on 95% bedrest, we waited. For labor. For me to make up my mind.

For the alarm to go off so we could just wake up from this nightmare.

Coming next: an abridged version of the next few days. Thanks for hanging in there with me.


k@lakly said...

I totally get wanting your body/nature to decide. No mother should ever have to be in the place you were in.

As for the felines...I swear we could leave our 3 for a month and they wouldn't even notice we were gone. What on earth are you feeding those wiley quadrapeds???

Julia said...

Oh, Sue.. This is just brutal. I am so sorry.

And the nice china to boot. Truly insult to injury.

c. said...

I wouldn't be anywhere else, Sue.

It all sounds completely surreal. I can't imagine that much of what was happening to you sank it at the time, that it seemed as surreal to you then as it does to me now as I read your account. And yet, the, that is real. So. very. real. I can't imagine how you felt, Sue, having to make that decision, wanting it to be made for you. Like you, I would have wanted the decision to be taken out of my hands. Absolutely.


Mrs. Spit said...

I can just picture the two of you surrounded by the broken dishes, and for some reason, that just makes my heart break a bit more.

The Turtle and the Monkey said...

I am so sorry you have to relive all of this. I understand you wanting your body to make the decision for you. No parent should have to decide such things.

I am here for you. I will keep you in my prayers tonight.

Antigone said...

One year.

Antigone said...

I'm so sorry S.

Anonymous said...

I am so so sorry. I have been there, where you relive every bitter moment to gather no true resolution. I wish I could give you a hug right now, to let you know that I understand your babies were real and that your love for them IS real.
Carrying your babies in my heart along with mine...

CLC said...

Oh, Sue, I think I would have thought the same thing. 5% is 5%. I wish I could change this ending for you.

luna said...

I definitely get the waiting for your body to decide for you. I've said this before, but no parent should ever have to make such a decision. hardly a "choice" at all.

so sorry, sue. remembering with you.

loribeth said...

I can relate to the broken china at a critical moment. While I was waiting for my amnio results (3 & 1/2 friggin' weeks!!), we came home one day to find there'd been a severe thunderstorm & our basement floor was covered in rivers of water. Several cardboard boxes sitting on the floor were soaked. It felt like everything was coming apart at the seams. As Julia said, insult to injury.


Candice said...

Hi Sue,

I'm many, many days behind and just catching up on all you and C had to endure this time last year. And I am so very, very sorry. But thank you for sharing your story with us. I know I personally find it cathartic to document, to record, what I've had to endure and survive, and I hope your recollection to us helps to purge one or two demons and give you some small moments of peace in the process.

I could have commented on any of your previous (make that later) posts, written after this one--I'm reading from your most recent one on 1/4 backwards and have only gotten to this post here so far--but reading the dates of the boys' gestation and your talks with the neonatologist really struck me. I don't know if it would ever be something that would be useful to you--and my sincerest, biggest apologies in advance if even mentioning it is hard for you--but if you're ever curious what life might have been like had Jacob survived, I know one woman (the wife of a guy I went to high school with) whose son was delivered at 24 weeks and survived. He lived and he's now almost 5 years old, but with severe disabilities, and his parents always have to worry that the simplest cold may kill him. If you're interested, the link is on my blog, in the same section with yours; it's Following Elias.

And again, please accept my apologies if mentioning this mother's blog is insensitive; I don't intend it that way at all. I read a memoir this summer of another widow whose husband also was in a horrific bike crash, with severe head trauma. I don't know if the injuries were similar to Charley's or not, but unlike Charley, who died instantly, her husband managed to survive--of a sort--and lived for 18 months in a persistent coma. A part of me has always wondered what our reality might have looked like had Charley somehow survived but never been able to recover or be himself again, and reading this woman's memoir helped to supply part of a real/imagined scenario. I offer Christy's blog only in the same hope for a sense of closure to some of those 49-51% "what if?" questions.

Sending you big, big hugs, Sue...and to C too.