Friday, August 20, 2010
I am into 2 other blogs where I can be in conversation with other Mums who have lost a child. For the moment this is where it feels best for me to put my energy. Maybe in a week or 2 this will change, but at the moment I need to feel connected to others by my writing rather than just expressing myself and sending it out into the ether.
So I think I will get back to this blog in a while, but for now I will probably be writing elsewhere. Let me know via email if you'd like me to notify you when I start writing on this blog again.
Here's a funny. Just scroll down a bit and start up the clips of Kathleen Madigan doing stand-up. I really like her stuff:
Sunday, August 15, 2010
Reading 1 Rv 11:19a; 12:1-6a, 10ab
God’s temple in heaven was opened,
and the ark of his covenant could be seen in the temple.
A great sign appeared in the sky, a woman clothed with the sun,
with the moon under her feet,
and on her head a crown of twelve stars.
She was with child
and wailed aloud in pain as she labored to give birth.
Then another sign appeared in the sky;
it was a huge red dragon, with seven heads and ten horns,
and on its heads were seven diadems.
Its tail swept away a third of the stars in the sky
and hurled them down to the earth.
Then the dragon stood before the woman about to give birth,
to devour her child when she gave birth.
She gave birth to a son, a male child,
destined to rule all the nations with an iron rod.
Her child was caught up to God and his throne.
The woman herself fled into the desert
where she had a place prepared by God.
Then I heard a loud voice in heaven say:
“Now have salvation and power come,
and the Kingdom of our God and the authority
of his Anointed One.”
What a shocker. I planned to get to Church early and ask someone else to do this first reading for me, but I ran late and arrived just in time to read. As I approached the lectern I was hissing "This is not funny God. Not funny at all'. I did read it. I got teary while reading it, and I did not read it well, but I got through it. It was a very uncomfortable experience. My parish was of course understanding, and if I had really started crying I know someone would have stepped in to do the reading.
I think this reading comes up once every 4 years (for the Assumption of Mary). What are the odds of me getting stuck reading it, the person in the congregation most likely to be upset by it. No, I don't think God arranged for me to do this reading. I don't think God arranges any of this stuff, not the appearance of parking spots or the occurrence of my name on a long-standing reading roster or the growth of bacteria in an unborn child's bloodstream. That's not how I see things these days.
Positives coming out of this : the expressions of concern for me from parishioners after Mass, and their assurances that they still pray for me. Also the Mons who was doing Mass commended me on doing well with the reading and told me he was worried for me when he realised I was doing that reading (this was the first time this man had spoken to me or even made eye contact with me since Salome was born). Negatives: a well-meaning parishioner telling me something along the lines of "God must love you very much to have taken your daughter and to have caused you so much pain to draw you closer to him" or such like. My brain didn't hang around to hear the details. I have had very few comments like this from people since Salome died, so the odd one here or there doesn't upset me too much. A few weeks ago a workmate told me Salome's death was God's plan. I wish I'd come up with something sleek to say to her in response, but all I could think of to say was "Well God can shove his plan up his arse." I don't think she was too offended.
Wednesday, August 4, 2010
Basically Salome died due to an E Coli infection. To the best of everyone's knowledge, she was doing OK until about 24 hours before the birth. Then an E Coli infection made it into her bloodstream and she started to decline. The neonatologist estimates that the meconium came into the waters in the last 24 hours before birth, after she was already sick. Then she became distressed in the final stages of the labour, and inhaled the meconium. Then the umbilical cord got compressed in the final stages of the labour as well, which lead to more oxygen deprivation. Apart from the meconium and the perinatal asphyxia she was already sick with an infection. They instigated the treatment for meconium aspiration syndrome, but she didn't respond as they thought she should and that was due to the E Coli infection. That is why Salome did better on day 1 than on day 2, when the NICU team had predicted the reverse.
How often does this happen? I have found it hard to get an idea of how often this happens. In reply to my question about this, the neonatologist wrote: "early onset sepsis (that's the medical classification) happens 3-6/ per 1000 live births, with about 33% of them being E Coli. It is almost never related to what you have eaten. I'm sure that's not the cause." (Note that he wasn't saying that 3 to 6 of every 1000 babies die of early onset sepsis, just that that's how often early onset sepsis occurs). My obstetrician, who is very experienced, says Salome was only the second case she had come across in her career.
How did E Coli get to Salome? We will never know. The most common reason given in this situation is that the E Coli infection got into Salome's system via an 'ascending mechanism', which I am told means bacteria making it from the bowel to the vagina and up into the uterus once the cervical plug has started to come away in the last few days of the pregnancy. However, see the publication below that suggests this may not be the case as often as has previously proposed.
Does this mean I have E Coli? I think it means I did have E Coli. I did not have any noticeable stomach upsets in the last week or so before Salome's birth. It would have been hard for me to notice if I was sick with an E Coli infection. Firstly, I had already been nauseous every day for 9 months. Secondly Salome's birth was preceded by 10 days of pre-labour, which meant diarrhea was happening on each of those days. Thirdly, this occurred in the last week of January, so the weather was stinking hot. Would I have noticed if I had had a temperature? But we went to the delivery suite 3 times over those 10 days and they took my temp every time and nothing came up. I don't think I had a bacterial infection in late January, and both neonatologist and obstetrician has stressed to me that I don't need to have been sick at all for me to have passed the virus on to Salome.
Could Salome's death have been avoided? It is impossible to say. There seems to have been little or no indication along the way that anything was amiss. It may be that she had the E Coli in her system for a quite a while. I've been told it was probably in her blood stream for about 24 hours before her birth, but she could have been exposed to the E Coli for a lot longer than that. If we had somehow known she was sick and cesared (sic) on that day, Salome would probably have died anyway due to the E Coli. As soon as Salome's initial bloods came back, they knew there was something else going on with her apart from meconium aspiration syndrome, so the NICU team were already hitting her with every drug under the sun, including antibiotics. I guess the main causal factor is that E Coli. Could I have avoided the E Coli? Why did I have E Coli in my system? It is hard to remember what I ate in that last few weeks of the pregnancy, but I can't remember eating anything that was an obvious E Coli risk like salami, cooked chicken. But saying that I can't be sure.... Maybe I got cocky. Maybe I thought what harm can this food to my big strapping full term baby? I honestly can't remember. Or maybe I don't want to remember because the guilt and shame would be unbearable. If that's the case, lets let sleeping dogs lie. Seems to me E Coli can be passed on by a huge range of foods, and there are a lot of E Coli infections out there. I don't understand and I don't think I want to understand. It's too painful. Here's what else the neonatologist said in response to my question about why I can't just take antibiotics to rid myself of e coli: "...The infection only occurs at the end of the pregnancy (and will result in labour). Over half the mothers who delivered a baby with early onset sepsis did receive antibiotics during labour, even the sort which would kill E Coli. This means antibiotics is not always the answer...."
What does this mean for possible future pregnancies? So it is not possible to flush out E Coli from my system by taking a truck load of mega strength antibiotics. Apparently I now have what is not referred to as a 'colonised uterus'. If we did want to try for another pregnancy, I would first have a vaginal swab and get that analysed. Any current E Coli would be treated with antibiotics before we started trying to get pregnant again. Then I would have regular vaginal swabs through the pregnancy and I would be expecting to take some antibiotics through the pregnancy depending on what showed up on the swabs. I would then expect to have a Cesarean at about 37 weeks, after maybe spending the previous night in hospital on a drip having antibiotics flushed through my system and the baby's system before the baby was born. My obstetrician says that if we follow this plan, the chances of this happening again with another pregnancy are "low to very low". Not entirely comforting, I'm sure you'd agree.
Please find below a publication related to this topic. I am sorry I don't know where it is from but it has some references at the bottom. Whenever I read it my heart breaks for that poor pregnant woman and her annoying gingivitis. Then I think "But that happened to me too. That happened to my daughter and my family and my household." And my heart breaks all over again.
If I was the arty type I would choreograph a dance to communicate what I feel about this. It would include a lot of rolling on the floor, rocking, tearing of clothes, some wailing as well. I would call it '"colonised uterus". Maybe the soundtrack would be something / anything by Anour Brahem. I listened to an Anour Brahem album over and over as I laboured with Salome, and I am trying to claim his beautiful music back from those associations.
Normal vaginal bacteria in pregnant, healthy women includes Escherichia coli (Hillier et al. 1993, pg. S276, Table 1). The standard way to identify bacteria is by taking a sample and culturing them in the laboratory (Han et al. 2009, pg. 38). But this can only identify less than 1% of bacteria, because most bacteria is not currently cultivatable in standard laboratories using current techniques and protocols (Han et al. 2009, pg. 38). Researchers are starting to use DNA technologies (in particular, identifying the exact sequence of the bacterial gene known as 16S rRNA, using the DNA identification technique known as PCR (Han et al. 2009; Han et al. 2010)) to more accurately identify vaginal bacteria and bacteria causing infections.
Bacterial infection in the uterus has long been known to play a role in spontaneous preterm birth (Han et al. 2009, pg. 38). Where do these bacteria come from and how do they get into the uterus? The current theory that we have for the last 20 years and perhaps longer, is that the bacteria originate in the lower genital tract, and invade the pregnant uterus via an ascending mechanism (Han et al. 2009, pg. 38). Another way that bacteria is thought to reach the uterus is via the blood stream, originating in parts of the body that are not involved with the reproductive system (Han et al. 2009, pg. 38). Han et al. 2010 report a case where a pregnant women’s baby died in utero on the day the baby was born, from a normal bacteria found in her mouth and not found at all in her vagina or rectum. It appears that the annoying pregnancy gingivitis that caused her bleeding gums during her pregnancy, plus a mild cold and temperature in the 3 days before giving birth, conspired to give the gingivitis bacterium a very small window of opportunity to reach the placenta via the blood stream, while the mother’s immune system was busy efficiently clearing the cold infection. Once the infection reached the placenta, there are no defenses against it. The mother’s immune system treats the placenta as a privileged foreign body and does not attack anything there, and so bacteria that infects the placenta then infects the baby.
Researchers are starting to suggest using the new DNA identification techniques to identify bacterial infection, so as to identify when and what specific antibiotics to use in pregnant women (Han et al. 2009, pg. 46). These recommendations will probably be carried out in scientific studies in the next few years, and if the results show that such strategies of bacterial screening and identification reduce the loss of babies in pregnant women that is currently caused by bacterial infection, then such strategies will probably be implemented as standard care for all pregnant women.
Hillier S, Krohn MA, Rabe LK, Klebanoff SJ, Eschenbach A (1993) The normal vaginal flora, H2O2-producing lactobacilli, and bacterial vaginosis in pregnant women. Clinical Infectious Diseases, 16, S273-S281.
Han YW, Shen T, Chung P, Buhimschi IA, Buhimschi CS (2009) Uncultivated bacteria as etiologic agents of intra-amniotic inflammation leading to preterm birth. Journal of Clinical Microbiology, 47, 38-47.
Han YW, Fardini Y, Chen C, Iacampo KG, Peraino VA, Shamonki JM, Redline RW (2010) Term stillbirth caused by oral fusobacterium nucleatum. Obstetrics and Gynecology, 115, 442-445.
The topic of the day was anger. The last 2 weeks, around the time of the 6 month anniversary of Salome's death, I have found myself trying to stand upright in a fast flowing river of anger. Funny thing is, it was my hormones that started it. I was pre-menstrual, and that's never had me feeling angry before, but this time it was like the hormones lowered the wall of the dam and this huge water-wall of anger was on top of me before I knew it and it wouldn't go away.
Normally I am not adverse to anger. I wouldn't say it's my favourite emotion, but neither does it freak me out or scare me. But this anger is something else. The power of it was / is astounding. Of course there are triggers, and the triggers won't surprise you. They are things like
- thoughts about why and how Salome died,
- thoughts about how hard Salome's pregnancy was for me,
- thoughts about what life would be like for me if Salome had not gotten sick and / or had not died,
- being faced with another of the innumerable negative consequences of Salome's death on our little family,
- seeing my friends 6 week old daughter (the anger exists alongside a genuine happiness for my friend and her family),
- seeing the 6 month old baby who goes to my playgroup (born 2 days before Salome, bless him, and now a gorgeous chubby boy sitting up by himself),
- contemplating the memorial cards we need to write and the tombstone we need to organise,
- thoughts about whether Matt and I will ever be able to face trying for another baby,
- thoughts about the nausea and sickness I will most likely face if I ever get pregnant again.
There are also things that lower the dam wall further, that aren't connected with my grief but that nevertheless reduce my capacity to manage the anger, such as:
- lack of sleep;
- ongoing physical pain (from my back injury)
- hours of very clever baiting behaviour from X
- feeling stuck in the house
- lack of time to myself (I have an insatiable appetite for time alone and X seems to have an insatiable appetite for 1 on 1 time with me. A bad match.)
When I discussed this with Jane today she invited me to practice what I preach. How many times have I urged clients to get more comfortable with their anger? How many times have I talked with clients about the importance of acknowledging anger because otherwise the anger will go underground and pop up somewhere? Jane was reminding me that the anger is a huge energy that can be channelled in a constructive way. The question is what am I going to do with this anger?
When the sadness was with me I was more comfortable with that. I snuggled up on the couch with my sadness, and it was company in a way. My sadness was a very poor substitute for my baby, but my sadness for Salome was the closest connection I had to her. Now here at 6 months, along comes this anger, no less a part of the grief than my sadness was, no less worthy of respect than my sadness was. But I am not even prepared to offer my anger a chair. In fact I seem to be trying to cram my anger into a cupboard.
The problem is I can't be arsed with the anger. It's too tiring. It's unbecoming. I don't have the time to unpack it. But keeping the lid on the anger is no picnic either. The anger is like a mega-size strong black coffee, no sugar. It is not my preference to drink my coffee strong and black, but that's what the universe has set in front of me at the moment, and there is nary a soy decaf cappuccino in sight.
I have also been reflecting on the ways I have been complicit with people's impression that I am doing OK now and we don't need further support. I suppose now that I am back at work, I have more practice in presenting myself as doing well and in some situations a higher incentive to do so. I am indeed feeling better than I was 3 months ago. I am not proud of feeling better. I am proud of hanging in there, proud of working so hard to stay connected to Matt and the girls, proud of staying engaged in the world enough to let time heal me. If I was doing all those things as best I could and still not 'feeling better' (What do I mean by that anyway? Feeling less?) then I would I feel no less proud. No matter what emotions I have, I do Salome proud every time I get out of bed and re-engage with the world in whatever way I can. I suppose I am proud of the small decisions I make ever day to inch myself towards happiness and contentment. As for the reduction in unpleasant emotions, I have no more cause to be proud of that than of my hair growing back.
So let me be absolutely clear, at least in this comfy little forum where I can choose my words at leisure: I am not doing well at the moment. I am very angry that Salome got so sick, that a stupid bacterial infection left our daughter with such severe disabilities, and that she died before we could bring her home. I am angry that I find myself at age 37 contemplating one day attempting to do another pregnancy, something I thought I would never put myself through again. Otherwise I am angry about a whole lot of other trivial shit that just bugs me up beyond my low threshhold between calm and cranky and beyond that from cranky to angry.
Therefore, if you have had thoughts in the past about what you might do one day in the future when you see me or someone else in our house having a bad day, this might be a good time to start your engines. In the past some people have given me a kicking (at times quite rightly) for being quick to offer help but being crap at asking for help. Here I am once again proving that is not always the case :)
To finish here are 2 quotes I have found about anger that I like. I am also going to change the quote on this blog's banner some time soon.
The world needs anger. The world often continues to allow evil because it
isn't angry enough. ~Bede Jarrett
Anger as soon as fed is dead -
'Tis starving makes it fat.
Saturday, July 24, 2010
- Birthday party: I had a birthday party of sorts a few weeks ago to mark my turning 37. Almost all the parties we have had at our house for the past 6 years have been about our daughters, and I am out of practice at the art of grown-up parties. At Salome's funeral, we had a lot of out-of-town visitors who we didn't get a chance to spend time with. I didn't want that to happen again at my birthday party so I only invited locals to my birthday party. In the 3 days before the party I had about 10 people cancel (that will teach me to have a party the day after the end of a school term) and the day before the party I was nervous and wishing I hadn't organised it. However the night went well and I had a very very very good time. I wish I had a reasonable photo to put here of me in my eurovision-themed fancy dress, but in all the photos I have of that night I look like a hyperactive drunken crazy woman and I refuse to believe I really looked like that. God knows I felt like a rockstar at the time, especially when that man lent me his rollerskates. And lets not talk about the karaoke at the pub afterwards. I had warned people that I'm prone to bad behaviour in public venues where karaoke is available, because I am a terrible microphone hog. When it comes to karaoke I do not limit my art by such right-wing concepts as 'pitch' and 'tone', and I certainly don't share. The Rock Star Within only gets unleashed once every few years, so there's a lot of pent up energy behind her. You'd best get out of the way, keep your head down and cover your ears. My karaoke performances are always brief and passionate, with 100% commitment to the song. I am good at using the whole stage. I work well with props and I do good floor work. I am not good at sharing the microphone or the spotlight. I do not forfeit the stage gracefully at the end of the song. It's about working with your strengths, and making sure you only do karaoke at a place where you'd never want to return.
- The hair: My hair was starting to get too long before my party. I wanted to have an Egyptian eye shaved into the back of my head, because I have a running joke with X about 'Mummy has an extra eye in the back of her head'. Apparently getting a shape shaved into the back of your head is expensive and in Newie it takes a while to organise. So I shaved it back to 12 mm again instead. When I originally shaved my head, there was a lot of symbolism in the act for me (see blogpost from My 3rd titled 'Please Sponsor Me' ). I would like to publicly proclaim that those factors are not directing my decision to keep on shaving my head. I am not feeling stuck in the stage of grief I was in. I am now shaving my head because much to my amazement, I really like how I look with a shaved head, and I love how low maintenance it is. Also when I eventually grow my hair out I know there will be an unavoidable 'toilet brush' stage, and I am not ready for that yet
- The job: I am 4 weeks into my new job now. The project I am working on is this one: http://www.partnersindepression.com.au/site/ . I am developing some supplementary info packs to tailor the 'Partners in Depression' programme to specific target groups, such as people who care for someone who has both an intellectual disability and depression. Using my psych skills while having a break from clinical contact is fantastic. My workmates are good company too, although I am stuck in my own office down a weird corridor... Yes you read right, the newest person on the team, the lowest paid, only working 2 days per week and I get my OWN OFFICE!!! Back in my brain injury job it was 7 clinicians for 1 office, like the 7 dwarfs. My new job is at a different site of the same health department, but in terms of resources, we're not in Kansas City anymore Toto.
- School holidays are overrated. X's behaviour was very difficult to manage over the holidays, so much so that I was counting down the hours for her return to school. So far this year we have made advances in reducing X's pinching, scratching, biting, kicking and hitting behaviours. That's a win for us and we cling to it for dear life. When X is wound up we need to watch her every second because breaching boundaries is her favourite hobby, and it often results in damage to property, her sister or herself. I feel like X's appetite for one-on-one time with me is insatiable. When she is tired or flustered it's like her frontal lobes are nonoperational and she has very little capacity for impulse control. Now that her body is bigger and stronger, this can lead to hair-raising behaviour, such as running straight across a road faster than I can catch her or throwing objects at my head with enough strength and accuracy now that they actually hit me. She and I have been at loggerheads over the past few weeks. I am finding it very difficult to enjoy her company, let alone to be mindful of how precious she is to me. Actually I find her exhausting and infuriating much of the time, and I often feel despairing of our parenting of her. But there she is every day, full-on and feisty, always on the look-out for an adventure (ie seeking risky behaviour 24 / 7 ), always curious about new things, consistently trying to connect with me by pushing my buttons until my fury at her behaviour brings me out of my shell and back to the present day with the 2 daughters I have still alive. X is a person who will not take a backwards step. One day I know I will be grateful for this aspect of her personality, but here in July 2010 it is giving me the super dooper hootenanny shits.
- The gym: I am still going to the gym 3 times a week. I go early in the morning so I am back on board at home by the time the house gets busy. I now feel comfortable in the gym environment most of the time. My favourite time to go in 7 am Saturdays, when all the beautiful people are still hungover in bed. There's a woman who goes at 8 am on Saturdays who looks about 75 and she works out with a personal trainer. She is inspiring. So are the people who are obese who work much harder than I do. I hardly ever see the Knights these days, but that doesn't break my heart. I was complaining to Matt recently that lately when I do my usual gym exercises, I can't seem to get my heart rate as high as it used to go, and the machines tell me I am not burning off as many calories as I once did. Matt said that seeing as I had been doing a gym workout 3 times a week for almost 2 months I don't have grounds to complain about getting fitter. So I guess I have changed my opinion about the gym. I doubt I'll ever be addicted to the gym, but it is a good exercise option for winter.
- Visitors: We have had several sets of visitors with us at our house over the last 4 weeks, which has been lovely. It was particularly good to spend time with some old friends who have known Matt and I before we were a couple, and for the decade since. There's something healing about people with people who have known us for long. It puts our current heartache into better perspective. One of our visitors is staying on for a while: Hermione the guinea pig will be staying with us for a few months while her family renovates and moves house. She's a sweet little thing, and I enjoy having her around.
- Plastic surgery: Did anyone else see the interview on 7.30 Report last week of Blanche and Bob? Below is a look at the worst plastic surgery I have ever seen. Blanche was a reasonably attractive woman and now she looks weird. When she talks her face doesn't move. It's hard not to compare her with Hazel and sadly for Blanche she was never in the same league. Blanche was outclassed by Hazel on every front, always will be.
- Election: I am trying but failing to care about the federal election. When either of the candidates come on the radio all I hear in my head is "You Haven't Done Nothing" by Stevie Wonder:
We are amazed but not amused
By all the things you say that you'll do
Though much concerned but not involved
With decisions that are made by you
But we are sick and tired of hearing your song
Telling how you are gonna change right from wrong
'Cause if you really want to hear our views
"You haven't done nothing"!
It's not too cool to be ridiculed
But you brought this upon yourself
The world is trying to pass us by
We want the truth and nothing else
And we are sick and tired of hearing your song
Telling how you are gonna change right from wrong
'Cause if you really want to hear our views
"You haven't done nothing"!
Jackson 5 join along say
Doo doo wop - hey hey hey
Doo doo wop - wow wow wow
Doo doo wop - co co co
Doo doo wop - naw naw naw
Doo doo wop - bum bum bum
Doo doo wop
You would not care to wake up to the nightmare
That's becoming real life
But when misled who knows a person's mind
Can turn as cold as ice un hum
Why do you keep on making us hear your song
Telling us how you are changing right from wrong
'Cause if you really want to hear our views
"You haven't done nothing"!
And here's a funny thing, Judith Lucy talking about how she coped with loss a while back
Sunday, July 18, 2010
The Facts of Life
In the early days
I felt I wore you
like some logo
on my face.
when the woman at the eggs
could not read your absence
from the creases and
My traitor face -
bland as an egg carton -
did not scream at her.
I wanted to tell her -
standing there reading labels -
of all the things
I was discovering
that I had lost -
each moment cracking open
to find you gone:
only four places at the table;
only three pink sugared biscuits
left in the fridge (you helped
to roll them before boredom
eased you back to Lara
jumping on the sofa);
only two children
in the rear vision mirror;
only one direction
that this blessed life drags us -
heels banging on the road.
It's half your little life
since I helped you onto the see-saw
and we tipped laughter
into each others' faces.
Two birthdays gone:
some failed artist
totally lacking the repertoire
to sketch you at five.
And memory no better:
a three-toothed old lady
driving her trolley full of papers
into the wind.
For you are fading:
this precious pain
that is my ice bridge to you
melting in the grimy flow
Now I bump into it -
one fact among others -
as the river pulls me
to its own end
gaily ignorant of rocks
and plates of ice
hurling me down rapids -
a bony glissando -
then rolling me over
and showing me
(the bright sky).
I particularly love the line "This precious pain that is my ice bridge to you is melting in the grimy flow of circumstance". I very much understand the idea that intense feelings of grief are one of the few connections I have to Salome, so when i feel the sadness less and less, it is bittersweet.