Wednesday, September 29, 2010

Seven days today

I went to Woolies the other day.

I don't know which day it was, as I can't seem to keep track of them lately.

As I left, I caught the faintest whiff of the same perfume the midwife wore during her epic 16-hour shift last week.

I didn't make it back to the car without crying.

Instantly that smell had taken me back to that day and I didn't want to be reminded.

Today was incredibly tough, I think because it has been exactly seven days.

I had the energy to have a shower and eat breakfast (sadly, I am not one of those depressed types who misses meals) before I just had to get back to bed.

Lately I feel like a smoggy black fog is hanging over me just about all the time.

I feel like I'm on the edge and really vulnerable and worried about what my emotions will make me do next. If a random woman's perfume is going to have me erupting into tears, how the hell am I going to go back to work next week.

I am really looking forward to the counsellor tomorrow. I am not sure if work would actually be a good thing, bigger picture-wise; or if in fact I am not ready.

I just don't feel stable. At all.

One minute I want to be alone because Jay's grizzling is driving me over the edge, and the next, I want him and T there on the bed with me, cuddling me endlessly.

I know it will get easier. I know it takes time.

I just wish I was there already.

Monday, September 27, 2010

Sleep brings no respite

I had a dream last night.

T, my mum, my sister and I were out by the beach or somewhere and all of a sudden I decided to put Jay, who is just over two and a half, on the bus home by himself.

A two and a half year old on a public bus home by himself.

Reason, ration...it all pretty much went out the window. That bizarre dream logic won the day as no one tried to stop me. One minute I had made the call, the next he was on the bus by himself.

Then, a little while later, after he was gone and out of my sight, reason and ration kicked in with devastating force.

The panic and the guilt jolted me awake and back to reality. It made me physically sick to my stomach.

In my half-conscious state, I imagined us all racing to the bus stop, calling the bus company and asking passengers on every bus we saw if they had seen him.

I imagined the worst and, worst of all, I imagined his little face, forlornly looking around. I imagined the worry forcing his facial features taut and I imagined him bawling unstoppably once the anxiety took hold.

I don't need a psychology degree to work out what that dream means. It still unsettles me to my bones. It still makes me cry, when I honestly thought the tears had run out.

Also, I re-read my previous post and suddenly realised I used the term "baby" when writing about, well, the baby. In hospital, I had said "foetus" - a cue the midwives had picked up on, displaying their finely honed sensitivities. They too called it foetus. The doctor, who we saw for mere minutes at a time and who we spent less time with, kept calling it "baby" or, in one heartbreaking moment, "bubby".

As the days wear on since last Thursday, I feel slightly closer to the baby - or its spirit at least. And it feels wrong to name it with such a clinical, medical term.

Sunday, September 26, 2010

Little boy, I will never forget

It is done, it is over.
But there is no box on the planet big enough to contain this experience.
I can't close its lid and relegate it to the darkest, dustiest corner of the roof.
I cannot burn the memory or erase it from my conscious or subconscious being.
Forgetting, sadly, is not an option. Instead, I remember the sadness. I will never forget.

We went into hospital last Wednesday morning, arriving at 7.30am on the dot. Earlier, we had said goodbye to Jay and my mum, who had flown up for the week to look after him. As all four of us hovered at the front door, Jay leant forward to say he wanted to say goodbye to the baby. He leant further forward to brush his lips against my belly, concern and a look of "am I doing the right thing" etched into his furrowed brow. Of course it was the right thing, you darling little man. Even if it set us off crying.

The doctor came in to see us after the midwife had shown us our room. Next door was a family, the muffled bass tones of a man's voice and the stark crying of a baby indicated the new family they had become. They were there for the reason most women came to a maternity ward for. To have a baby. A living, crying, demanding, shouting baby.

How I wanted one of those.

The doctor explained how it would happen. "How many weeks are you now?" he said. "16 weeks and 4 days," I said.

Just before 8am, the first dose of Misoprostol went in. Two tablets inserted into the vagina far enough to sit at the opening of the cervix. Painful? Shit yes.

It would act to loosen the cervical opening, which only had to dilate to about 3 centimetres, before the baby would come out. Sounds simple, if horrific, doesn't it?

I was to be given doses six hourly. After the first six hours, nothing had happened. I think I went to the loo a lot and felt a bit of rumbling in my belly, but nothing more. So, we watched morning television, me wishing desperately to fit the true demographic this type of television is aimed at. I wished I was a bored housewife boning up on the Telstra T-Box or the Ab Circle Pro; a worker on a sick day tuning in to the morning cooking show or the uni student bludging lectures to watch Dr Phil: anyone but me, going through what I was about to.

2pm came around and the doctor reappeared to dose me up again. Still painful? Yes.

I could definitely feel something happening in my belly, and again I went to the toilet a lot (especially poos, the tablets make you do that apparently). But nothing major happened. For some reason, I had a 4 - 6 hour timeframe in my mind and I honestly thought it would all be over before night fell.

Well, night fell and there was nothing but a few waves of nausea and slight cramping.

The midwife gave me the next dose at 8pm. No less painful because it was given by a woman, by the way. Then things started to happen.

I guess they were contractions, I guess they were a toned down version of what real full-term labour feels like. A hell of a lot of discomfort, enough to make you feel like glass shards are being slowly hammered into your teeth. Twinging pain in my lower abdomen and fluttering waves of tightening and muscle cramps.

I felt like I had to go to the toilet a lot - again. I didn't want to lay in bed, even propped up. I think I knew something was happening, something was coming and it didn't feel right to be expelling that into the bed. I needed to be on the toilet.

I had had horrific visions of the baby coming out in the toilet - it happens - but the midwife said she would put a bed pan on the top, so that made me feel a lot better.

I had a about three intense waves of painful cramps, a lot closer together than the previous lot over the past few hours. I was on the toilet and felt incredibly sick and pained. Then, at 9.40pm, I felt something dislodge deep inside me. I swear it made a "knock" sound as it happened. Seconds later, I felt something slimy and slippery come out and land in the bed pan.

Instantly, my ears started ringing, my vision went fuzzy and my head completely clouded over. I went all tingly and felt hot, then cold, then hot. My lips were dry and I felt like my head was sitting on one side of the room, while my body was in another. I said I was going to faint, because I have done that enough that I know what it feels like. So another midwife told me to put my head between my knees. I did and slowly, slowly, came back around while T supported me and the midwife washed my face with cold face washers, although I was moments from losing consciousness.

With my head between my knees, I realised how close my head was to what I thought was my baby sitting in a bedpan, with nothing but a towel (which I had over my knees) and a strip of porcelain between us and it. We had told the midwife, the doctor, anyone who would listen, that it would be too traumatic for us to see the baby. That was imperative. But we accepted an offer for the staff to take a photo and store it, perhaps for later, when we feel up to it.

I sat up slowly and asked "is that it?" The midwife got me to lean back so she could look in the bed pan. She couldn't see properly, so I walked back to bed and lay down.

Then she came out and delivered really the worst possible news. It was only the membranes and about a litre of amniotic fluid. No baby, no placenta. I still had so much more to do, so much more to endure.

I think what made it more horrible was the fact that as soon as I felt it all come out, I felt instant relief and almost completely physically normal again. But it was only the beginning.

I was absolutely stuffed by this stage, so T set up her bed on the floor beside mine and we tried to sleep. I felt nothing in my belly until 2am, when the midwife came in to give me my last dose (they only do four at a time). Yes, still painful, even at that hour.

Surely, I thought as I gritted my teeth to stop the pain, this dose will be the last one and the baby will come out now.

Next thing I knew, it was 4am, and the midwife was at my bed asking me if there was any change. I had dropped off to sleep for two hours, completely at ease and feeling nothing, despite the fourth dose.

If you think you know frustration, if you think you know disappointment at being at the mercy of nature, your body and other totally unpredictable things - I do not want to hear about it!

Throughout the early morning, I had gone to the toilet and felt something strange when I wiped. I checked with the midwife who said it was the cord coming out - a completely horrific thought because I just thought of what was attached, you know?

I had also done a lot more number twos and there was yet more painful frustration when the midwife returned from emptying the bed pan to say the tablets had also come out.

The doctor came in about 6am I think it was and T and I were pretty strung out by this stage. We were coming up to the 24-hour mark and we were running on about 2 hours sleep.

The doctor did a fairly brutal internal exam to feel for the baby. My old tactic of finding a focus point on the ceiling to fixate on did not work at all this time. I kept losing sight of it as I blinked in pain, shook away tears and involuntarily darted my eyes around looking for some sort of escape from it all.

He finally finished and told me the baby's legs were dangling down in the vagina. He said he stopped the exam because he didn't want to dislodge the head from the body. There was, and still is, something just so endlessly disturbing about that. That part of the whole ordeal is perhaps the most traumatic to think about. To visualise. And it is something that will haunt me forever.

Plus T completely lost it at that point, seeing me in such pain. I was high on morphine (although I wish I was higher) and trying to console her when I couldn't even muster the strength to keep my own eyelids open.

"I need you to be strong for me. We're not finished yet."

He gave me a half dose at about 7am, as the 2am dose had fallen out, and we all prayed that something would happen now. Soon, those strange contractions started, but less intense than last time. I worried the drugs weren't working, that we had one shot way back at 9.40 last night, and my body was not going to respond to anything further. Jesus, what would they do then? If it didn't come out?

It was about 8am when I felt intense pressure to go to the toilet. I just made it to the loo when I felt something more than just urine come out. It felt slippery again and about a third less in volume of the earlier one.

I knew it was the baby. I just prayed the placenta had come out too. I collapsed into T's body, leaning into her as I sat on the loo and just cried exhausted tears.

I hobbled back to bed, only to be told the baby had come out but the placenta had not. While I turned my head to the right to look out a window that had the blinds drawn, I noticed the midwife in my periphery walking out of the room with the bed pan in her hands. With our baby in her hands. Taking it away from us forever. It was the worst experience of my life.

The next, and final, hurdle was the placenta. Then it would all be over and the important emotional obstacles would begin. The doctor said if it didn't dislodge by itself I would have to be sedated and taken to theatre.

By about 9.30am, nothing had happened. So the doctor decided to do yet another internal to help shift it. Slightly less brutal than the initial one, but brutal nonetheless.

Shortly before 10am, it came out and was all over. An excruciating experience that began 26 hours earlier was now finished. Finally, mercifully, finished.

26 hours.

The physical pain disappeared, but only because I think I was too exhausted to feel it if it was there. Then, as I expected, a new flood of emotion hit, tsunami-like. The doctor and midwife floated, melted out of the room when they saw the grief and relief spread across my face, which was criss-crossed with streaming tears.

I buried my head into T's chest and we both held each other, crying. "We made it," I said. Although it wasn't about some sense of achievement, just an awful finish line crossed, with a thousand more in front of us.

We will see a counsellor this week, and maybe a few more times. We are in a terrible limbo now, in the days following. What kept me going through the darkest moments was the unwavering thought that we had made the right decision. "We didn't want to see you suffer," I kept repeating to myself. "We could not have given you a good life. Your life would not have been worth living, we are sorry, but this is the most humane way to protect you."

In the days since, there have been darker moments - which I didn't think possible - where I have panicked and imagined the two-week amnio result report coming in the post, telling us the baby was 100% perfect, that it was all a mistake. It is virtually impossible, but guilt has created some crazy irrational thoughts these past few days. Like the hypotheticals in those statements above that I used to get me through. To get me through. So what about me? This is not about me, it's about a tiny life we chose not to allow to continue. For very good reasons, but a decision we made. Don't dare think we made it lightly, or that we won't feel its consequences forever. Those statements use words like "would" and "could", not "will"...no certainty. So those darker moments have been filled with a guilt-laced mourning and a real horror that we made such a huge decision based on "would" and a maybe. Highly likely, but a maybe.

In the days since, we have all oscillated between bursting into tears without warning and feeling crippling sadness and a lament that sits heavy on knotted shoulders and frowning foreheads.

Sleep either comes like a knockout drug or not at all, and I have not been able to drift off at night without crying yet. I don't look forward to going to bed like I used to. I don't want to be left alone with darkness, silence and memory.

Of course it's not all black, but you do catch yourself just marvelling at the fact that you are back doing those mundane life things like driving to the shops and doing the dishes and giving Jay a bath...and doing them so quickly after such a devastating experience. I had a massage the day after we got home and almost exploded into a fresh wave of tears when the masseuse's fingers finished kneading out the hundreds of little knots across my shoulder blades. Why? Because it was further distance from our baby. Those knots came from him, in a way, and the worry and anxiety and gut-wrenching he caused. And now they were gone. He was gone. He is gone.

Leaving the hospital in the early afternoon, more than a day after we had entered, was just horrible. I had given birth, but we were leaving without our baby. That is not fair and the cruel injustice of it all makes me angrier than I have ever been in my life. I wanted to be holding a baby in my arms next March, I deserved that, I should have had that. Everyone around me was looking forward with such anticipation to that moment. Who dared to take that away from us? We did, I suppose, in a way. But not in other ways. So cruel, so unfair. Our hearts are broken.

September 22, I will never forget you. Little boy, I will always remember you.

Friday, September 17, 2010

This is what worst case feels like

A few months ago, I had taken to putting four Xs on the bottom of emails and text messages.

Before then, I had deliberately chosen the three X-method, to signify my family and the three people in it.

So, at the risk of people thinking I had a strange obsession with Queensland's beer of choice, I went with XXXX.

After next Thursday, I will revert to three Xs.

The amnio did not go well. In fact, it went as worse as could be imagined.

The procedure was fine. It was just like a blood test, and the needle was mercifully really fine. I held my breath more or less the entire time, against doctor's orders, but it really didn't hurt then or after.

The doctor came in to the little side room we had been ushered into after the amnio was done. I thought we would just be signing something or whatever, as we did not expect results for another two days at least.

She told us that she had picked up a serious heart defect - and showed us the ultrasound close-up of the tiny heart, pointing out the gaping space of nothingness where a second valve should have formed.

This, she said, was consistent with Downs Syndrome babies, and she suspected that was what the baby had.

On the drive home, it dawned on me that there was no way in hell she would have mentioned that, before the results came through, if she wasn't almost certain. There is no way she would say that if she had even an inkling that the results may come back normal.

Devastating, numbness, my ears start ringing and I feel like I am going to throw up...but thankfully not too much shock as this ugly seed had been planted almost four weeks ago when we got the first scan, giving me a one in 29 chance of having a baby with Downs Syndrome.

I am that one in 29.

The doctor rang yesterday afternoon to confirm it is Downs Syndrome and it is a boy.

Thankfully we had a few weeks to think about it, and talk about it, so our decision is deceptively simple.

As we drove home I caught sight of some cows and horses in a field and cursed human science for being so advanced, for putting us in this situation, when less primitive animals sort out genetic abnormalities for themselves. Simply, they don't survive, or rarely at least. In the same thought, I praised the same science for giving us such a definitive result so early in the pregnancy.

Apparently we can test the remaining six embryos, even at that early stage, for Downs Syndrome and some other chromosomal abnormalities too. It costs a lot more and we don't know what's involved, but we are not sure if we'll do that. I mean, what are the chances that this could happen again?

I put the "why" completely out of my head. Truthfully, it was never there. This is a freak act of nature, and some bloody cruel luck. There was no history of the syndrome in the donor, nor in my family - and there often isn't. These things happen in life.

In the meantime, we go on straightening crooked picture frames on the wall, eating meals at the right times, doing the dishes, having showers at the right times, trying unsuccessfully to sleep so we can forget for a few hours and keep living a life. But it's a zombie's existence.

Some moments, the guilt is palpable...can the little foetus hear us talking about it? Does it feel anything knowing what we are planning? How dare we presume to play god?

Other bigger questions cloud our conscience...and they are ones we may never know answers to. How are we to regard this thing? Is it human, with a personality, a life force, a heartbeat and a happy existence ahead of it? There are as many yeses as there are nos.

At this moment, neither T or I want to see the baby when I give birth next week. It will be tiny, about 14 cms and its head less than a golf ball in size. Apparently I will feel something like bad period pain and when the pain stops, that is usually a sign that it has come out.

I will be almost 17 weeks when it happens. I will know when it is happening, which is better than a lot of women who have sudden miscarriages.

We don't feel, at the moment, that it is something we want wrapped in a blanket that we can hold and look at. Honestly, I just want it out. It will leave a lasting imprint on our lives forever, I don't need a visual to add to the trauma.

I had trouble getting off to sleep last night as I suddenly thought something should be done to honour this little one's memory. But what? Not a funeral, no big occasion. But what? I don't know.

I am mentally trying to detach as much as I can, a process I started four weeks ago. It will hurt too much if I bond more than I already have done. Thankfully, our OBGYN said you don't normally feel kicking until about 19 weeks.

You hear people say those one day at a time, one foot in front of the other cliches at times like these. But they are cliches for a reason - because they are so common. We are on an emotional yo-yo string right now, never able to predict our reactions.

Seeing Jay wake up all cute and sleepy from an afternoon nap is usually enough to set us both off in floods of sobs which utterly confuse him. But we just give him extra hugs and kisses, squeezing the life out really, while his eyes widen in bewilderment.

He is great to have around at a time like this. He doesn't know what's going on, although we have told him the baby was sick and we have to say goodbye to it soon. Funny, he knew when I was pregnant before we did and when we asked him if the baby was ok, he would say "baby sick" quite a few times. But he is still blissfully Jay, wanting a muffin, wanting to play play-dough, wanting a story, wanting to go to the park. And we do those things not because we feel like it, because we don't, but because of him. And then, when we see him laugh at taking an enormous bite of muffin, or zooming down the slippery dip, we realise how valuable he is. Because he is bringing a smile, or some joy into what seems like a pretty dark, joy-less time right now.

We will be ok, I know it. We have so many good things in our lives. Whether it is the unshakable support of family and friends, the six more chances sitting in storage in Brisbane or the fact that we were privileged to find this out this early, and not at 39 weeks.

Good things are all around. Some days they are harder to find, some days they are impossible to see, but we will get there.

Sunday, September 12, 2010

A test in patience

In three more days we will have the amnio. We have only been counting down for 23 long, excruciating days already...so what's another three?

In fact, I sometimes completely forget all about it. Yeah right.

The week away in the Whitsundays was an excellent distraction. But it only soaked up five days of the anxiety that had spilled on the floor, flooding our hearts...we came home, and I felt like we ran out of paper towel some days. (We really did run out of paper towel last week, it was a mini domestic crisis. Weird.)

Actually, it's been the nights, they have been the worst. See, all of a sudden, my bladder is not the vessel of almighty impenetrableness that it used to be. I have trained it up well over many years sitting in offices swigging from a two-litre bottle of water; trained it to fill, and to the brim, before I go to the loo.

Now, half a sip of liquid and I am busting.

So, the bladder kicks my conscience into life at 2 or 3am, and then the worry brings it to its knees.

I imagine receiving both phone calls from the doctor once the results are in: the good phone call and the bad one. It's purely self-preservation, as I have to role-play it in my mind as some form of perverse preparation.

During the day, I succeed better at putting it out of my mind. There are phone calls, work, emails, life stuff, Jay stuff and home stuff to fill every space in my conscious mind.

At night, the only distractions are darkness and silence, and they are useless ones at that.

"Just put it out of your mind, shut up and go to sleep," I tell myself. "You will be cactus tomorrow.

"And besides, how stupid will you feel if you get the results and everything is fine and you find out you were worrying over nothing. What a waste of energy."

Other times I try and imagine what a long needle will feel like penetrating my belly: the fat layer, the muscle layer (if it is there) and then into the uterus. How on earth will it pierce the amniotic sac and not cause the fluid to flood out? How does that little spot heal? Will it hurt, will they have to yank it out suddenly if the baby moves right near it - and it does move around like some Thunderbird on acid, I have seen it! Will everything be alright in those two weeks afterwards? Are the two days that I am having off work enough? Will everything be alright?

It really has been a battle to avoid making it all-consuming, but 70% of the time I get it right. Whenever I think about the worst outcome, I often physically feel a pain...in my stomach or my chest or somewhere. And I tell myself that is not good for the baby. I imagine the little foetus frowning and jerking to try and shake off such negativity.

Sometimes that imagery works, sometimes it doesn't and the panic wins.

And the other thing about this awful limbo is that part of me feels I need to suspend any bonding until the test results are in.

I am not sure when you are meant to first feel the baby kicking, but I almost don't want to feel it. I don't want that other layer of emotion complicating my attachment with a being I may never know.

Roll on Wednesday.