Answers. More Questions. Disciplinary Action.

[or, The Not So Nice Parts of the Birth Story]

A few days after the birth of the girls, it was obvious that there were some unanswered questions that were eating away at me. M. kindly suggested that I, "write them all down. Put them in a notebook to take to the doctors, and don't think about them until we are there."

And that's what I did.

And this morning I pulled them out. The first stop in our back-to-back doctor tour was with the perinatologist who delivered us. He got the brunt of the technical stuff.

First, the easy ones:

Are you mad that I've been walking?
-No.

Can I start to exercise again? Do I have to wait 4 more weeks?
-No. No problem. Resume your regular routine.

Does that mean everything? Do I have any restrictions now?
-[Do you feel ok? yes.] Then Nope. None.

Now, the harder stuff:

Do you still think an infection caused the pre-term labor?
-Hard to say. We know that by the time we saw you [around 3 am Friday morning], the first baby's sac was fully exposed. Her placenta and umbilical cord were infected. We won't be able to pinpoint at what point they became infected.

If there was an external infection, why were there no symptoms? No discharge. No bleeding. No pain while peeing, nothing!
-It is actually quite common for pregnant women to have bladder infections, for example, with no symptoms. What is even more puzzling is that your 19-week scan looked terrific. No issues there. Something must have occurred within the course of those 2 weeks.

Could my weakened immune system and lack of a spleen had anything to do with the cause, spread, increase of infection? Should I have ever stopped taking penicillin on a daily basis (had done so for years after Hodgkins)
-Probably not. Unless you know you have an infection, there's no sense to pump your body full of antibiotics. And you had probably developed a resistance to your dose of penicillin years before you stopped taking it. I see that as a non-issue.

What came first - the infection or the cervix opening? Was the infection made worse by the cervix opening and exposing the sac or did an internal infection cause the cervix to open?
-We honestly do not know. But we do know that we can take preventive measures for both the next time. Trust me. We will be watching you like a hawk.

Is it possible the infection was already there at 19 weeks when I had my scan?
-Yes. It's possible.

Do you see any reason why I would not be able to carry a pregnancy full term? Any hesitation recommending that we try again?
-I see no reason why you couldn't have a healthy and full-term pregnancy next time. We learned a lot. We know what to watch for. Try again when you are ready. We will not lose two in a row.

And here's where it gets dicey:

What are the differences between cramps that are "normal" and ones that should be watched?
-When in doubt, call. Come in. We'll check you out. We'll always err on the side of caution. Especially with twins.

But, we did.

We did call. My doctor's office at 7:30 p.m. that night when cramps became strong and regular. How long apart? About 20 minutes. Any bleeding or discharge? No. The midwife on call told me to relax. Go home. Take a bath. Put my feet up. Call in the morning.

I did that. And the cramps continued. And became more frequent and by the time we could set our watch to them - every 10 minutes - we called again. She told us to head to the hospital. She'd meet us there. That was around 11 p.m.

We were there in minutes. She was not. In fact, we spent the next several hours in a corner stall getting "monitored" as cramps and pain increased, I was urged to give a urine sample (where I am convinced that I could feel the sacs starting to descend) and M. was left pleading to anybody who would listen, "please. I don't want these babies to be born here!"

Medicine to stall the contractions finally arrived and made no difference. The midwife finally arrived, after I had begun to bleed and show a discharge, took one look at my cervix and said, "you are fully dilated. I can see a sac. Your chances of delivery are very high."

And that is when my doctor was called. He was there in less than 15 minutes and had already called the perinatologist en route. They were in our room before we we were.

So, do you think that timing could have made the difference?
-It is possible.

If we had arrived earlier? If we had been seen earlier? Could any of this changed the outcome?
-We cannot say for sure. It could have been dicey either way. But yes, perhaps, with more time, we could have at least had a better chance of saving the second baby. how much time, that's hard to say. This is where you start to play the guessing game. I can't tell you when the tipping point would have been.

***

If time could have made a difference, how much time did we lose when the midwife told me to "go home and take a bath and relax" at 7:30 pm? How much more time did we lose when we lingered in a corner stall in labor and delivery being "monitored" and nothing else until hours after we arrived?

***

When we got to my obstetrician's office (just down the hall), we learned that he, too, had those same questions. While he didn't say anything at the time, he told us now that when he arrived at the hospital he was very bothered by the fact there had been communication with the office earlier in the day, that there had been such a lapse between our initial voiced concerns and when he was actually called. And that we weren't told to come in and be examined immediately.

We talked with him for a long time. He said there were two questions: "what could have been done to prevent the premature birth?" and "was the best possible care provided and all steps taken at every level?" While we don't have definite answers for the first, he said that in his mind, the answer to the second was no. And that he was going to do everything possible to remedy that. He refused to put his family name on a practice that delivered sub-standard care. You trust people to be on call and be a representative to your practice. In his mind, this was a deal-breaker.

We spent the next several minutes with the HR Director of the office trying to get down an exact time line of what happened and where, in our opinions, there were gaps in care. I don't know what will happen to this account, or what will happen to the midwife who shouldn't be. I am trying not to.

I know that this morning opened up a lot of wounds for M. That he had already come to the conclusions that he could best live with, and that some of the answers we received put those in question. I also know that I needed to hear answers. I needed plain, unsugared explanations. And I needed to know if there were points along the way where I was at fault.

I don't know if a few more hours (few more days?) would have saved my girls. I don't know if Isobel was destined not to be here from the beginning. I don't know if Jovita would have had a chance if we had bought her more time. I don't know. I won't know.

[Updated: I actually just received a call from the perinatologist to clarify: a few hours probably would not have made a difference, especially since my white blood cell count was so sky high by the time they saw me. A day, maybe. But even then there is no way to know.]

Where I Vent. Just a Little.

mom: how was your week?
me: how was my week? why are you asking me this? what are you wanting me to say?
mom: oh
...
mom: [ten minute monologue on weather forecasts and variations between here and the eastern shore, sprinkled with "you know..." every fourth word. Kids at home: please do not pick up this annoying vocal tic.]
me: [audible huffing. non-audible eye rolling.]
...
mom: what do you think about going out to dinner for Xmas eve?
me: I think what I told you last week when you asked me. I don't care. I don't care where. I don't care.
mom: well, I just thought it would be a good idea since your brother is really the only one that enjoys my cooking and M. never eats what I make anyway...
me: that's right. I forgot. It's all about you.
mom: oh
...
mom: well, we're going shopping for our open house this weekend. You know you and M. and your brother and everybody [everybody meaning my brother's girlfriend of several years whose name they can never remember] are invited.
me: of course I know. Know that it is the last place I want to be and the last way I want to spend my husband's days off.
mom: well, we're not expecting you, I just wanted you to know...
me: I know. Thanks.
mom: well, here's your father...
...
dad: hi. everything ok?
me: NO! NO THEY ARE NOT FUCKING OK. Why are you even asking me this? Why are you wanting me to say everything is ok? And please, please don't tell me its not raining in Delaware. I already got the full report.
dad: ok. fine, m. I'm gonna go.
me: no. stop. no. I'm sorry for yelling. Don't go away mad. It's just...Things are not ok.
dad: I know. I know. I just don't know what to say. Just know I love you.
...
I do. And I know they love me. But conversations with my parents work my last nerve on a good day. This one, filled with small talk, underhanded digs, and flotsam was not one I wanted to have as I am surrounded by blank Xmas cards and birth announcements. Trying to figure out who should get what. Which folks get both? For whom are the announcements appropriate? Just family? Friends and colleagues? Those that already sent their sympathies? Is that too much of a double dose? Are there expectations or perceived expectations around announcements? [I don't want there to be. I just want to share the few images we have of Isob*l and Jov*ta with people who I know would have loved them.]

These are the questions I am struggling with this morning. That and whether or not to bathe (don't worry. I'm thinking yes.) Not where I want to eat on Xmas eve or how to politely decline the xteenth invite to my parents' open house without hurting their feelings.

And I know many of you will tell me that now is not the time to care about other people's feelings; that it is entirely appropriate to take care of me and M. right now. I get that. And 99% of the people around me do too. But somehow I am still stuck with navigating my parents' easily- hurt feelings. I felt this in the hospital when they drove down to see us. I feel it now. I feel it all the fucking time.

At the hospital, I felt bad because we weren't crying in front of them. After 36 hours of tears and hard decisions, we just didn't have any left to pull up on cue for visitors, you know? My mom's response: "it's ok. you're just numb." No. You are wrong. Numb is the last thing that I am. I am so far from the numb that I were I were and wish I would stay that way for a while. I just don't choose to share or display my grief with you right now at this moment.

And of course I didn't say that. I just sat and I fumed. And I let things fester. And I could see M. was festering too.

When we got home, she called almost daily until one night when I finally did cry. After that, she seemed placated. Soothed by the fact that I wasn't in denial. She announced she wouldn't call me for a couple of days. I passed the test.

And now, things are completely in reverse. I am expected to respond to their mundane comments with mundanity of my own (sorry. is that a word?) And I can't. I simply can't. I know they have no idea what to say. Most people don't. And I know there are times when I am so relieved, joyful even, to have a normal conversation with friends and others who stop by, call, write, etc. But it just feels like there has been no transition, no gray area with my parents. Nothing to move it beyond. Either we mourn dead babies or we pretend like they don't exist. One or the other.

And I just can't do that. My world is not that black or white.

You might say, hey, m. Why don't you talk to your parents about all this? Why not just put it all out there? Maybe this will all bring you closer.

Hmm. Well, yes. Nice idea. And one I have given some thought to. But based on previous attempts, I don't see it panning out all that way. You see, I tried that a few times before. Once when I thought my mother was being an absolute ass to M., once when I located documents and letters revealing more than I had even known (or been told) about my adoption. And these all ended as hysterical, hyperventilating, who-can-scream-louder-harder-faster-before passing-out-for-lack of oxygen fights. I finally cave because it all just wears me out and I know the end result. My mother crumples in sobs and poor me's and "you always talk down to me"'s and "I never know what to say to you"s and a few weeks later, we are back to talking about the weather.

So, no good.

Sigh.

I think it's time for my daily walk. I can't wait to go to the doctor's tomorrow to hear that I probably should not have been walking this soon. "Light activity only" for the first two weeks my papers say. No exercise for at least six weeks, it also says.

Sigh.

So, the one time I have time on my hand, the time where I really, really need some constructive distractions, and my options are incredibly limited. Like I said, we see two sets of doctors tomorrow, and hopefully walk away with some answers (if possible) and some (hopefully) revised postpartum timelines and instructions.