Everyone has two memories. The one you can tell and the one that is stuck to the underside of that, the dark, tarry smear of what happened.

I've been chewing on this quote for months now, and I suppose it's time I do something with it.

The line comes from Amy Bloom's novel Away, wherein the protagonist loses her family in a Pogrom and flees to America.  And then finds out that her daughter, who she sent out of the homicidal rage to the chicken coop, may (may, maybe, could be?  Is it possible?  Is she crazy to believe?) be alive.  And the book proceeds to outline her physical and emotional journey to discover this truth.  It's a beautifully written book, and contains many sentences which were so hard-hitting in their gorgeousness, that I reread them multiple times.  And many, like this one, stuck with me.

It has come to my personal attention that, uh, (tries to remember what day it is; uses fingers to count) 17 months (!) after the fact, that I'm still "in the closet" to many people in my life (read: nearly the entirety of kids' parents in Bella's class, save for one who's shut like a clam due to that doctor/patient thing), and others (read neighbors) simply know the bare bones:  my baby died when she was less than a week old.  So I'm now, finally, hallelujah, to the point where I'm totally ok talking about it, and hell, kinda want to talk about it, and I'm faced with what to say.  So I got to thinking about the clean, tidy anesthetized version, scrubbed up twice with disinfectant and anti-bacterial, free of pet hair.   (OK, maybe not entirely free of pet hair, picks something off my keyboard and something else off my coffee mug.)  And the messy, nasty, gutwrenching, terrifying underbelly.  There is the story I tell in public, and not even that often,  which often simply gets condensed to, "I had a baby, she died when she was six days old."  Then there's the underside, the "smear," that gets told here and in therapy, the story my husband knows.  The story that gets replayed in my head, and in my nightmares.  The two memories, and why I withhold what I do, and why I tell what I do.

For starts, I don't even know where to insert this information into a conversation.  No fellow pre-school parent, for example, has ever asked me how many children I have.  Or if I plan on having more.  Or anything.  Which in no small measure, I'm grateful for.  But I'm now worried that when the opening comes, it will be like a bomb dropping and leaving a wasted plain.    There is, after all, the polite thang.  I'm assuming, having long-ago thrown out my Miss Manners handbook on neonatal loss, that it's probably not polite to discuss death of infants at all.  I think it scares people.  Hence my "in the closet"-ness, and not wearing my "My Baby Died" t-shirt when I pick Bella up.    Really, the whole story's a smear -- so why go there?

I'd love to tell you I'm as brash in real life as I am here, but I'm not.  Frankly, I don't give two farts about other people's scare-factor after what I've been through,  but apparently I do a bit. I don't go there, I don't even give them the nice memory.

Should I broach the subject, there's the why-part, which is really none of their business -- my genetics or infectious self. Inevitably when I tell someone, the next thing out of their mouth is, "Oh my god, what happened?" and I'm left wondering how to elaborate in a way that tells them something, but perhaps not too much, and does so quickly.  And I do this, knowing full well that they probably really don't give a shit, and THEY asked me to be polite, and they're praying I don't go into deatil.  "She was born with a host of irreparable, fatal problems."

But depending on whom I'm speaking with, part of me wants to start elaborating.  To let them know what a shock this was, and that I was not some head-in-the-sand, completely naive late 30-something mother, who smoked or did drugs or drank myself silly for nine months.  "I had a clean amnio, we went to term -- in fact, a week late."   Am I negating blame?  Letting them know how horrific the bombshell was?  Warning them that the universe can be horrifically unkind when you least expect it?

And I hesitate to get into the genetic discussion with most people, even though I know they're wondering (I can practically hear it) if we're going to have another baby.  I don't want to tell them the odds, because in the event I do become pregnant, I don't want them thinking I'm crazy, or knowing that we've used a gamete donor.  Strangely, some people I'd like to shield from this information are in my own family.  I don't want them knowing the odds, anticipating, worrying, getting emotionally invested; nor do I want them rejecting, replacing, or writing off.  But, honestly?  Sometimes I hear myself slipping into the odds, and the scary knowledge that there's "no way to know prenatally."  Am I telling them how pissed I am about my chances and choices?  Preparing them for failure in case there is another?  Trying to scare them too, informing them that ultrasounds are merely gross generalizations that occasionally can predict gender and obvious visible problems, but occasionally fail to discern numerous, mortal conditions?

The two memories.

I had a baby, she died when she was six days old.  She was born with a host of irreparable, fatal problems.  (I had a clean amnio, we went to term -- in fact, a week late.  I have up to a 1:4 chance of this happening again, with no way to know prenatally.)

And the underside of sobbing, anger, despair.  The memories of hospitals, tubes, needles, seizures.  The discussions about comfort levels, and removal from life support.  The knowledge of funeral homes, cremation, and explaining death of a sibling to a toddler.  The ongoing aftermath of grief and all of its gross, infectious ooze:  sleeplessness, bewilderment, weight I can't lose, short-term memory loss, jealousy, anger, loneliness.  All of it ugly.  Except for her, of course.  She was beautiful, and sadly, not meant for polite conversation.


************************

A couple months ago Mr. ABF came home from a social day of community service with the news that neighbors of ours are "splitting up."  It was news that took my breath away -- two people I adore, two people who've been together for what seems an eternity, two people who are part of the backbone of my very lovely comfortable community.  And the very next thought, after my heartbreak for them, was the heartbreak for us, how it would impact the neighborhood.  They would no longer host or attend functions; their house would sell; their dog, who my daughter insisted on dressing up like on Halloween, would no longer walk by my house.  And the NEXT thought was jeebus, this must be how everyone thought about us:  heartbreak for them, a cloud over the fun-loving community.

These are people who will now be where I am, with the big elephant in the room, no one knowing exactly what to say, including myself.  These people, when pressed, will assuredly also have their two memories -- the one they tell us ("It's nobody's fault"), and the one that careens inside of their heads.  They were so gracious when Maddy died, showing up in person at our door, with hugs and tears and an explanation that they really didn't know what to do, so they brought chocolate.  Which made all the sense in the world to me.  They were people who nudged me out of my shell to say thank you, and people who followed up with me, months after everyone else assumed I was ok, and asked how I was doing -- for real.  These are people with whom I shared the honest answer:  Awful, but functioning.  And so now I feel the need to reach out to them, to let them know I also have no idea what to say or what to bring to the table (Chocolate?  Vodka?) but that I'll be there, that I understand the elephant in the room, the uncomfortable realization that you're no longer who the neighborhood thought you were, that you, too, have two memories.  I'm not asking to be let in on the underside, I'm not even sure I want to hear it.  But I'm willing to bet they'll be grateful that I understand it exists.

Are you "out?"  To everyone or a select few?  And which -- or how much of your -- story do you tell? 

So we always say it's tough to choose one 'best post', but this month, your hearts and words made the task especially difficult.

This month we honour Carol at Happy Sad Mama for her post, Happy-sad. Five years past the stillbirth of her daughter Charlotte, Carol reflects on holding her own identity, blessings and ordinariness in one hand, and the vivid, almost-like-unrequited-love of babyloss in the other. I liked how Carol's writing holds a bright light further down the path, showing flashes of acceptance that give me hope.

Remember to nominate your favourites by the 14th of every month--we so deeply appreciate hearing new voices. And as always, thanks to all of you for participating!

July's glowing nominees were, in random order:

STE at So Dear and Yet So Far for High wire act 

Hisaak at Rebuilding Myself for What I wish I could tell you

Angie at Bring the Rain for A beautiful song

Carol at Happy Sad Mama for Writing

M at My Sanctuary for #135

Mrs. Spit at Mrs. Spit Spouts Off for Last kick and Fathers

Steph at Mi Isla Sola for Dear Isla

K@lakly at This Is Not What I Had Planned for The fear

Jenny at There's A New Monarchy In Town for What I know

Stephanie at Hopefully Trying for This is what it is

Becky at Life with Love and Loss for Pregnancy after loss, part one 

I say "or something like it," because I can't be sure exactly what it was that I wrote.  Though I try to be reasonably scrupulous about checking those things I can check, I can't bear to go back and read through my early posts.  Even imagining them triggers a shuddering claustrophia, terror of going back to that dark and narrow place.   

I feel a little of the same fear when I read blogs written by the newly bereaved.  I'm less wary of those who, like me, started blogging only after their losses as a way of channeling their grief.  On those blogs, the words tend to be weighed and filtered, the pain veneered with prose.

More difficult to read are the blogs by people who've been chronicling a pregnancy, when suddenly everything goes terribly, unexpectedly wrong.  I start those stories at the end, then go back to read the earlier posts, viciously ironic in retrospect: the heartrate at the first ultrasound, a link to the options for changing tables.  

I read those older posts like a novel, seaching for clues that might foreshadow the coming disaster.  But, of course, real life doesn't work that way.  We're always being blindsided.  We're always unprepared.  Life is a run of discontinuities and the gods have a weakness for the O.Henry ending.   

When I come to the end of the posts, I feel helpless.  I want to give something, but when I look down I usually find that my hands are empty.  My experience -- however similar to theirs -- is valuable mostly to me.  All I can do is watch and, once in a while, say something that I hope is, if not exactly right, at least not too blatently wrong.  Because if it's hard to write and cry simultaneously, to read and cry at the same time turns out to be no trouble at all.

Do you read lostbaby blogs?  Do you comment on them?  Are there specific things you try to say or not to say?

Ladies in Hades (Dell Books) back cover map for crime thriller, USA 1950, courtesy Steven Guarnaccia

We have tea parties on Beelzebub’s Roof and get skincare tips from Helen of Troy and whenever we’re feeling sorry for ourselves we get drunk with Cleopatra and play chicken, taking turns peering over the edge of the Bottomless Pit.

Then at 3 AM we stumble together through streets of fire to Anne Boelyn’s Waffle House for belgians with cinnamon sugar. It’s not what you would call fun but we are arm-in-arm anyway, shuffling in step.

I’m sorry you’re here too, but I’m glad for the company.

++++

The pamphlet was a piece of paper folded twice, a photocopy of a photocopy, crooked and smudged. On the front was a line drawing of a forlorn-looking woman with her head in her hands. She was wearing bellbottoms and a turtleneck sweater. The title read

BOOKLET OF NORMAL FEELINGS.

It was a fruit-punch-and-cheese NICU gathering for parents and I must have looked a mess, eyes glassy and red, bird's nest hair, on the brink. A social worker appraised me and as she reached for the melonballs with one hand she pushed the pamphlet across the table with the other, saying maybe you should read this, looking prim and satisfied, duty done.

Instead of taking the pamphlet I reached under her waistline for her pantyhose, pulled them up over her head and walked out.

Scratch that.

I obediently took the thing and looked it over with a frozen face as the parents around me yammered cheerfully about jaundice and reflux. Then I burst into tears, the snotty, gulping-for-air kind, bawling about cerebral palsy and retardation and brain damage and lifelong diapers as everyone else buried themselves in platefuls of two-bite muffins and styrofoam cups.

As I stumbled out into the hall she followed me and I thought cynically here we go, she’s going to try and help me but instead she called my name and said here, you forgot your bag, pressing it into my shaking arms. Then she turned and walked away.

Later that day the social worker in charge found me at the isolettes and said Kate, I think we should talk about what you might need, you know, to get through this and I said okay and she said I’ll be in touch but she never was, even after Liam died, other than giving me a $10 gas coupon once every two weeks. Which reduced the cost of twizzlers for my NICU commute by about half.

I understand they’re budget-strained. I understand that babies are the priority, not me. They provide beepers and tubes, the diagnostics, the chemical goo, the doctors highly trained in the art of saying we just have no way of knowing.

But I often wonder: if I were in charge, how would I initiate new and aching parents to this alien world? How would I help them feel like they had a place in it? How would I stand beside them as they made decisions about do-not-resuscitate orders and palliative care? What would I do to consider a babylost family ‘discharged’? We wouldn’t set them loose again into the rampant ordinariness, squinting and disheveled, without some sort of floatation device… right?

In a week or so I’ve got a phone interview with a researcher from the hospital who wants to know what they could be doing differently for bereaved parents. What would you tell her?

Go here to nominate by no later than the 14th of the month, and here to review the winners so far. On the 15th, we'll announce the winner along with a complete list of the nominees for a virtual medusa meet 'n greet.

Who's rocked your heart this month?

PubMed is a database of original journal articles in basic biological sciences and medicine maintained by the National Institutes of Health (NIH). I am, by virtue of my education as well as my temperament, a PubMed addict. That is to say, in researching my medical care, I like to go straight to the horse's mouth. So today, in the spirit of sharing what I learn in my digging and in hopes of said digging benefiting others, I am inaugurating a new periodic series at Glow in the Woods-- PubMed Says. For the first installment of the series, I am discussing an issue of interest in managing a subsequent pregnancy-- intrauterine infections with group B streptococcus (GBS).

Our immune systems are really a wonder of efficiency and adaptability. In fact, they are essentially mini-evolution machines, running in real time.  You see, with the number of pathogens we have the potential to encounter in our environment, encoding even a single fighter molecule for each of these would require more genes than we have in our entire genomes. Not to mention that pathogens evolve just like everything else (think new strains of flu every year), and so having static defenses is only marginally better than having no defenses at all. Ok, let me qualify that-- we have static immune systems too (skin being the biggest organ and biggest participant in that system), and we would not be able to hold off the assault of all the pathogens we encounter in our daily lives without that innate immune system. But neither could we do without the adaptive one-- the one we hear the most about, the one that has those famed antibodies as major players.

Antibodies are molecules made by the cells of our adaptive immune system that can recognize specific portions of specific pathogens. They are generated randomly, but according to rules-- one component of each specified type is picked randomly, and components are assembled in specified order. Sometimes the joining of the components is a bit off, which provides for even more variability.

Everything in biology happens via interaction of surfaces, tiny, microscopic shape fitting. Molecules are themselves signals, and their interaction is the passing of that signal. That, combined with the vast number of antibodies we generate, means two important things: 1) we can (and do) generate antibodies to pathogens we have never encountered before, to pathogens no-one has encountered before; and 2) we can and do generate antibodies that recognize our own molecules, molecules that are working hard to keep us chugging along. That last possibility is a problem, and the basis of autoimmune disorders.

So the reason autoimmune disorders are actually rare is that we also have a great way of "teaching" our immune system about self vs. non-self. We need it to know not to generate antibodies to self, only to the things that we would encounter from the outside, the non-self, the potential pathogens.

And this is finally where this little discussion becomes relevant to pregnancy-- the self vs. non-self education thing? It happens perinatally. Very loosely speaking, while the baby is cooking, the immune system is set to assume that everything it encounters is self, and so it kills off all the cells that would produce antibodies that can interact with these self molecules. At birth, the switch gets flipped, and the system gets reset to assume that everything new it encounters from then on is non-self, pathogen, signal for search and destroy. Pretty cool, right?

Well, there is one teensy-weensy problem. The problem, of course, is that baby in utero effectively has no functioning immune system. Ooops. But the good news is, the baby is in the sac that is in the uterus, and no pathogens are supposed to be able to get into the intact sac. And for most women, that is exactly how it goes. The bad news is that for some women some infections can get in, with fatal consequences.

This question is of special interest to me because my son A was infected with one of these infections, Group B Strep (GBS), and the pathologist ruled that to be a contributing factor in his death. Beyond the "what happened?" question, history of infections in the intact sac also have serious implications for any subsequent pregnancy, and that is why I chose this topic today.

A paper* (A 30-Year-Old Pregnant Woman with Intrauterine Fetal Death) was published last summer in the New England Journal of Medicine (NEJM), that both describes a particular case of a fatal GBS infection, and does a nice job reviewing in brief the general state of knowledge about causes of stillbirth in general, and infections in particular.

The case described in the paper is sad and tragic, and all too familiar to many of us here-- normal pregnancy with some minor causes for concern throughout, resulting in fetal death and stillbirth in the 40th week of gestation.  Although the text uses medical jargon, the upshot is that upon delivery the baby looked fine, with only the skin changes as a sign of having been dead for about a day being notable. In other words, without an autopsy there would have been no explanation for this tragedy, and no information to guide the family in making decisions about a subsequent pregnancy.

Multiple causes of stillbirth were considered, including fetal anomalies (ruled out by autopsy), maternal disease (discussed and found unlikely due to medical history), unexplained (always popular, no?), and fetal infection. According to the literature, infections account for approximately 10-25% of stillbirths, with significantly higher rates in economically depressed areas and in developing countries.

In light of what I said above, it should be pretty clear that any infection that can breach the sac is likely to lead to unfortunate consequences. Infections can be caused by bacteria, viruses, fungus, or protozoa. In addition to direct fetal infection, infections may also cause stillbirth via placental damage or severe maternal illness. There are very few pharmaceutical agents available to treat viral infections even in adults, and as far as I know there is not much that can be done for a fetus infected with a virus.  Yeast (a fungus) and various protozoa have been reported as causes of stillbirth, but extremely rare causes. What I want to do here is focus on bacterial infections, and GBS infections in particular, and then discuss management of a subsequent pregnancy if a diagnosis of infection as a primary or secondary cause of stillbirth was made or suspected.

GBS is known to be common in genital tract, and a large percentage of healthy adult women are colonized, i.e. have GBS in their vagina or lower intestine (This meta-study from Europe shows rates of colonization of 6.5-36% with great geographic variability) .  Recognition of GBS as a human pathogen did not occur until 1960s. In the 1970 it was recognized as a leading cause of neonatal infection and an important cause of maternal uterine infection. Since then, screening protocols have been put in place to identify women colonized with GBS, and antibiotic treatment during labor is recommended for women found to be colonized. These treatments are aimed at reducing the rate of neonatal infection, and establishing these guidelines has led to a marked decrease in early neonatal GBS infections.

In addition, and more relevant to our discussion here, 4-10% of stillbirths in United States and Europe are thought to be caused by GBS infections. Thus it is known that GBS can cross intact membranes and cause infection of amniotic fluid and/or fetus. In addition, GBS is associated with some cases of PPROM, and in at least one study, for at least one population, has been shown to be the leading cause of PPROM.

GBS, like other bacterial infections known to cross the intact membranes and cause stillbirth and other adverse perinatal outcomes, is an ascending infection, meaning that it rises up from mother's vagina, anus, or rectum, to the uterus. In most cases, infection occurs after the rupture of membranes, and that is why the guidelines for treatment of colonized mothers call for treatment with antibiotics while in labor.

As I mentioned above, this is an adequate protocol for most mothers. However, for those of us who have had infection, particularly bacterial infection, ruled to be a cause of stillbirth or PPROM, it is wise to consider additional measures in a subsequent pregnancy. I would, in abundance of caution, also suggest that families where the cause of stillbirth was unexplained, particularly those who did not have an autopsy performed, or whose autopsy did not include a report on possible infections, consider these additions to their subsequent pregnancy care protocol.

The NEJM paper, after providing fairly conclusive evidence for GBS being the cause of the stillbirth in the particular patient, includes the following possible interventions (beyond the general guidelines referenced above) aimed at attempting to prevent a recurrence of stillbirth caused by GBS:

• Screen for GBS rectovaginally early in pregnancy and suppress or eradicate detected colonization with antibiotics. (It is worth noting that colonization with GBS can be intermittent, that treatment is not always successful at completely eradicating colonization, and that re-colonization occurs in up to 40% of subjects within 4 weeks.)
  
• Screen for GBS in patient's sexual partners and suppress or eradicate detected colonization with antibiotics. (Same caveats as above.)
• Advise abstinence or condom use.  (Evidence that GBS is sexually transmitted is weak. In the words of the article authors, "Both interventions are relatively harmless, but compliance may be poor.")
• Vaccinate the mother. (No vaccine is currently available.  If it does become available in the future, it will not protect fetuses before 32 weeks of gestation because IgG antibodies that would be the actual mechanism of the protection are transferred across the placenta only poorly before that gestational age.)

My own protocol for my ongoing pregnancy includes early and frequent urine screenings for GBS and other bacteria. If and when any are found, I am treated with antibiotics in hopes of preventing an intrauterine infection.  This intervention was proposed by my OB, with the caveat that there have not yet been studies to show the effectiveness of this prevention method. I was more than happy to agree to this protocol, as this is pretty much the only thing we can actually do to try to prevent a recurrence.

Obviously this protocol is most useful for tracking GBS and other bacterial pathogens. I have not done enough research to comment on what measures might be able to prevent a recurrence of other types of infection. However, in the abundance of caution category, I would suggest that it might be wise to treat the ability of any type of previous ascending infection to cross the membranes as a red flag for the possibility of other ascending infections being able to do the same in subsequent pregnancies, i.e. that it might be useful to apply the protocol for attempted prevention of bacterial infection in cases where other infections were implicated in a previous pregnancy. This is a conjecture on my part. I do not know of any studies that quantify risks of different infections following a previous case of any given infection. However, each one of us, in each of our subsequent pregnancies, is concerned with the sample size of exactly one, and therefore, we, in consultation with our health care providers, can and should decide which protocols would give us peace of mind in addition to which are incontrovertibly scientifically justified.

I hope you found this useful, or, at least, interesting. If you have ideas for future installments of this series, please let me know.

*I can not place a pdf of the paper in public domain here. But I do have it (as well as the pdfs of the other papers mentioned in this entry) , and if you are interested, please email me through our contacts page, and I will be happy to send it to you. 

refrain: recurring word, phrase or sentence. perhaps a sound.

the silent refrain: a word, phrase or sentence that you keep saying, yelling, whispering, or screaming, in your head. a sound that keeps going on in your head.

::::::::

Twenty years ago: I was a good student. Trying hard to keep up with the grades. Polite and toed the line.

My silent refrains then:

"Blah, blah, blah... ... can't you adults say something else?"

"Why do grades matter so much?"

"I am scared to shit. What if I forget the answers?"

"I need to get out of this place."

"Nobody understands."

"Life sucks."

"I wish my boobs can be a bit bigger."

"How come they just don't get it?"

"I want OUT of this system."

:::::::::::::::::

In the last eleven months, my silent refrains have been:

"WHY?!"

"Did I really deserve that?"

"I cannot take this pain any longer."

"My baby died, you idiot." (Usually when asked at the stores "How are you today?")

"Don't you dare ask where my baby is."

"Don't you dare look at my big, floppy belly."

"You just don't understand, you are such an ASS."

"My baby died, you moron."

"Wipe that stupid smile off your face. You won't smile at me like that if you know my baby died."

"Just let me die."

"Stop smearing your happy shit over my face."

"My baby died. Can you shut up please?"

(when looking at my two girls): "Love them now... love them now... you don't have all the time in the world..."

Often, this comes up when I am standing in the shower, I dunno why:

"No, he did not die. Of course not. Are you crazy?"

Some are not as violent or rude as those listed a little above, but still cuts deep:

"Where are you, my son?"

"Please talk to me, Ferdinand."

"Can you tell me if you suffered? Did you feel pain?"

"Am I unworthy?"

"Do you know this pain is overflowing?"

"We are all thinking of you today, **** that you did not make it, ****."

"Will I ever get over this?"

"Where do I buy a ticket to the "other side"?"

And on very rare occasions:

"I know I can get through this. I will rise from the cold ashes. I can do it, damn!"

::::::

A lot of the times, just some gibberish yelling in my head, so I do not think hurtful thoughts, suicidal thoughts, or don't-get-me-nowhere thoughts. Sometimes I get more gentle thoughts in my head. Really, sometimes they are even beautiful. But those do not happen frequently.

What is frequent: hearing this sound in my head, which is my heart cracking and shattering, all over again. I also now understand what is a silent scream in the head.

:::::::

Your turn now, what's your silent refrain?

Post the questions and your answers on your own blog, link to us here at Glow in the Woods meme-style, and share the link to your post in the comments. Or, simply post your answers directly in the comments.

(clarification: this is just a reminder post, hence the comments here are turned off--to participate, please go to the actual 6 by 6 page.)

As always, we gratefully absorb all your stories and companionship. We read every single comment, discussion topic and link, and do the best we can to respond thoughtfully (not compatible with spells of senility and distraction, so be patient). We're here for your voices, to feel some reasonable facsimile of sane and whole and understood--and we hope you feel that way, too.

Love and peace,
the medusas 

++++++++++++++++++++++++++

1 |   How would you describe your relationship to fear before and after the loss of your baby?
2 |   Is your lost baby/are your babies present in your life? In what way?
3 |   Tell us about something said or done after your loss that left you feeling nurtured or supported.
4 |   Tell us about something said or done after your loss that left you feeling marginalized or misunderstood.
5 |   What's taken you a long time to do again? How did it feel, if you have?
6 |   How would you describe yourself as a partner before, and after?

26 weeks, 1 day is actually pretty decent for a micropreemie.  They told me Finn had at least a 75% chance of survival without major complications, statistically...even if he was a white male fetus, that most vulnerable creature of the species.

I have learned, more viscerally than any professor could ever have hammered through my skull had I actually braved such a subject in my studies, that statistics lie.  Or that only fools believe they will come out on the positive end of them, at least.  He did have major complications, ones that proved insurmountable, fatal.  Despite steroid shots, his lungs collapsed.  One so severely that they tubed him directly through his skin, through his tender, papery flesh and the tissue of his tiny ribcage.  I do not even know if there was anesthesia...I was ten rooms away, trying to recover some feeling in my legs and a blood pressure reading high enough to qualify as alive, to prove to the nurses that I could stand so that they'd let me hop in a wheelchair and go to him.  When we finally won that fight and were ushered to his incubator, the wounds of his own battle were already vivid upon him.  His little fingertips and toes were blackened from lack of oxygen, and his chest had been cut, his throat tubed.  Before his mama ever held him.  Before there was ever a gentle touch or a voice that spoke his name.

Then we did hold his hand, and he squeezed our fingers, and we stroked his little feet and marvelled at him, and in the end hours upon hours later when the outcome of the battle was undeniable we surrendered and unplugged him and held him and tried to fit a lifetime of love and comfort into one last hour, before he was gone.  We were lucky, beyond measure, to have that time. And he was medicated, probably more than I even realized, so I do not think there was pain for him at the end.  I allow myself to think that.  I need to think that.

But for the longest time the rest, those brutal early hours, were something I simply did not allow myself to think about at all, because there was this primal cry that would rise in my throat and choke me.  Because my baby, my tiny baby, had been born to a shock and suffering that even now I know I only know the half of.  Because that was the first of his brief hours of life.  And because it was me who enabled it to be that way, me who made the decision, at 26 weeks exactly, that we would rescind our previous "no heroics" designation and go all out to save the baby I believed by then could be saved.

I don't exactly think I made the wrong decision...that's not why I lie here in a cold sweat before dawn some mornings.  The odds were that he might have survived and thrived.  I would, I think, have felt worse had we done nothing and lost a baby who might otherwise have come through okay.  And I don't exactly feel guilt, because I made the decision without guile and on the basis of the best advice I could get at the time.   But owning that decision and the pain that it - that I - caused that tiny boy will sit with me, part of me, until the day I die.  It is, if I am honest with myself, the cruellest thing I have ever caused to happen to another human being, no matter my intentions, my investment, the depths of my love.  And what wakens me in the thin light of 4:30 am these days, heart pounding, is the fear that sometime in the next week or two I may have to face it again, to choose again.

Choice is often and in many ways a privilege.  When you have no real control over the outcome of your choices, though, it can feel like a mockery, like a bitter joke.

They ask me if I want the steroid shots and I say, i don't know and I cast my eyes around the room like a trapped animal, wondering hell, do i look like i'm writing this story, like i'm in charge here?  The truth is if my cervix is showing significant weakness of course I want them NOW and if it's not I want to wait because they are most effective when given within two weeks of delivery and preferably after 28 weeks but sometimes it's weak and soft and sometimes it's not, that tricksy cervix.  The truth is these same practices have taken far less significant decisions out of my hands in the past, in the crises of labour, so the fact that they defer to me on this Big Thing just leaves me wary, puzzled.  The truth is they don't know what's going to happen and I don't know what's going to happen and I don't want control of Big Decisions in this liminal boundary zone because I know it is a fool's game. 

I am chickenshit, burnt crispy.  I want to abdicate.

The little life that hangs in the balance...for my own sake, sure, I want her at all costs.  But for hers?  That is the road I do not seem to know how to walk this time, the road I wish I could close my eyes to and ignore until it is safely past and I get to believe, maybe, that I will not have to choose again whether or not my child's brief life will be one of pain and machines and invasive procedures, until we reach a place where I can breathe and hope that I will get to play mother this time, not hapless, impotent god.

I whisper, please.  give me a few more weeks, and i'll happily pretend that I'm bossing you around for the rest of my life.