Two Years Later

I woke up very early this morning (before 5am), finished my book (Paddy Clarke, Ha Ha Ha by Roddy Doyle) and chatted to DH about it for awhile. Then a bit after 6am the toddler woke up (we three all normally wake much later naturally, whereas the nearly 4yo who normally wakes between 6 and 7am slept till after 9am) and wanted breakfast, so DH and I got up to give her food, and played a game of Dominion since we’d been too tired last night. I went back to bed just after 8:15am, and that’s when I remembered, crying, that it’s the toddler’s birthday: two years to the day since she was born exactly at 6am, and we got two wonderful hours (in an otherwise horrible week) with her, before I was sent to ICU and she to the baby nursery, where we each spent two full days alone among strangers.

That was a Thursday morning. On the Monday before I went in to the medical clinic for routine monitoring (blood pressure, urine, foetal monitoring and ultrasound, then a quick visit with the ob/gyn on duty, since I was then at just over 38 weeks pregnant). Problem was, my BP was high, and I apparently had protein in my urine, so they decided to send me to the hospital. At first we didn’t worry too much, since the same symptoms had shown up twice two weeks before, but disappeared by the time we/I got to the hospital, so we assumed they would this time too. They didn’t.

I honestly don’t remember the precise timetable of events. At some point we realised that I wasn’t going home that day, and that I needed DH with me, but the hospital wouldn’t let us have a 23 month old toddler with us in the labour and delivery area, even though our care plan for her (my mother coming to stay) wasn’t going to be available for another week, so we started frantically phoning around trying to set something up for her. A fabulous family we knew took her in, and then 2/3 days later we had to switch her to another. At some point we phoned my doula too, and let her know what we knew, which still wasn’t much. I remember spending most of that day just hanging around, not sure if the various results were *really* so bad that I couldn’t just go home, and strongly considering discharging myself against medical advice, because no-one was really telling me anything, and I felt perfectly fine (as well as anyone could at over 38 weeks pregnant, at least). I had no swelling, headaches, or any of the other sensory symptoms one is supposed to look out for with pre-eclampsia or related conditions that I could tell – just other people kept telling me my BP was high and my urine samples not good.

On Monday evening, though, they got around to persuading me that things looked bad enough that induction would be in my/baby’s best interest. I won’t go into all the horribleness of Tuesday and Wednesday; let’s just say bullying senior doctors who thought I should just go along with whatever they wanted without really explaining why, and completely over-rode/ignored the midwives and junior doctors who did try to take a bit of time to talk to me and incorporate or understand any of my feelings and wishes.

At one point I think I really hurt DH (who was wonderful, and got me most of the pauses and explanations that did happen, by being my back-up forceful voice when I just felt scared and abused, even when he was being told – although I wasn’t – that I was at serious risk of dying) by telling everyone, including him, to get out of my room and just leave me alone for a bit, while I just cried and sobbed. By then I was attached to the bed with a catheter, continuous foetal monitor, magnesium sulphate drip, pitocin drip, and possibly something else as well, so I really couldn’t get space any other way.

By Wednesday night I reached 3.5cm dilated (yes, after two full days of induction plus most of another preparing), and the wonderful midwife who was looking after those in the induction rooms arranged for me to transfer to an actual delivery ward. I was just ridiculously grateful when she suggested I actually walk there, after being tied down for two days, and then helped the midwife in the delivery room set up all my tubes and wires on one side of the bed so that I could stand/sit next to the bed when I wanted/felt up to it, and not spend the whole time on it. I spent the next few hours next to it, standing, sitting on a ball, or leaning over the side of the bed. I spent a good bit of time that way sleeping between contractions, until eventually the midwife said she was afraid I was falling so deeply asleep that I’d fall over, and persuaded me to lie back down on the bed, on my side.

Sometime after 5am I woke up to find the midwife writing up her notes on the computer, (she also had another woman to look after in the next room, so she came and went) and DH and my wonderful doula (I haven’t mentioned her much, but she was fabulous, as she had been during my first induction and birth 23 months earlier – that also took three days) asleep in chairs. The midwife asked how I was feeling, I sat up on the side of the bed, and said, “I think I’m pushing,” and it all went from there. (So yes, I slept through transition.) I don’t have any idea how long the pushing stage took, but baby was born at 6am on the dot, at a bit more than 3kg. The midwife didn’t want me to feed the baby immediately, until she confirmed the magnesium sulphate wasn’t a problem (it wasn’t) but for an hour or two DH and I just enjoyed spending time with our new baby and each other (the doula left shortly after the birth, since everything seemed to be fine).

I don’t recall a doctor coming in to check or talk to me, but shortly after the staff changeover, so about 8am, we got told that it had been decided that I needed to go to ‘Recovery’ for ‘a couple of hours’, and so it had been arranged that baby would go to the baby nursery in one of the two older post-natal wards (I had requested the newer one, that did rooming-in) until I could join her. This was rather a shock, since no-one had mentioned any ongoing problems (we were continually told beforehand that delivery is the cure for pre-eclampsia), nor that it might mean separation. When the orderly came to transfer baby, I told DH to go with her, and so I ended up alone for a short while, wondering what on earth was going on. Two of the doctors who’d been performing c-sections came in after a bit, and informed me that they were there to put in an arterial line, for continuous BP monitoring, and when the midwife came back, pointed out that if I was being sent to ICU (first I’d heard that that’s where I was really going) then I probably shouldn’t be being left alone before I went there. I fainted while the line was going in, and I recall the doctor joking that he’d cured my sky-high BP (unfortunately only very temporarily) as I came to again.

A midwife (or two) did then stay with me until a doctor was available to go with me over to ICU. A couple of the midwives who’d looked after me or had just been around earlier in the three days came in to say congratulations, as well. Unfortunately that was the last time I felt treated as a normal person who’d just had a baby for a couple of days. Some of the ICU staff were nice some of the time, but there it just felt like they were entirely used to their patients being unconscious or semi-conscious, so they only needed to talk, let alone explain themselves, to each other. Between fatigue (cf just having given birth) and the magnesium sulphate/other drugs I was fading in and out for much of that day (I remember one of the nicer ICU nurses coming over and checking my pupils at least once) but I also remember a large crowd of doctors and students at the end of my bed talking about HELLP Syndrome (first time I’d ever heard the term) and nasty possible outcomes, and then someone saying/joking that, “I think we’re scaring her,” because apparently my already far too high BP was climbing up and up and up as they talked about (but never to) me. As they turned to move on, someone did say to me, “You’ll be alright,” but it really was too little, too late.

A few hours later ‘my’ doctor did arrange for me to move to a quieter side-room of the ICU, as he felt it would help me recover, and he was quite possibly right. The only problem was that the second night I was in there it was two male nurses in that section, who were considerate enough not to offer to help me keep clean themselves (having given birth 36 hours earlier, and still being attached to the bed by a catheter and several drips, this was rather necessary) but not thoughtful/organised (I don’t know which) to get a female nurse from the main ICU over to do it until shortly before the changeover on Saturday morning, by which stage I was very uncomfortable. Even more annoyingly, they slowed the process of weaning me off the drug combination I’d been put on without ever telling me why, leaving me to get stressed out enough that it justified their decision by keeping my BP up. Eventually I caught the eye of the doctor on duty overnight (being in a corner of the side-room meant they weren’t walking past regularly) and got her to talk to them about why, because they certainly didn’t feel they had to explain anything to me.

Finally, finally, on Saturday morning I was deemed well enough to leave ICU and go join baby in the post-natal ward (but not the rooming-in one I’d requested). The nurse who did the intake paperwork there was very nice, but seemed clueless. First she described my baby as a boy, and then took about ten minutes to actually get her (yes, baby girl) brought to me. It was only then that they gave me the paper to allow DH into the nursery to see/collect baby, too, even though they’d seen he was the one who accompanied her over two days earlier, and were supposed to know where I was.

I think the two days in ICU were the loneliest I’ve ever spent. Baby was in the nursery, with no-one able to visit her, DH had gone home to look after our elder daughter, who was very clingy after spending a week with two families she barely knew, completely unexpectedly, and couldn’t bring her into the ICU, which meant he couldn’t visit either, just drop a few things off for me, and when I phoned some of my friends (all mothers), the very idea that I might not be fine after giving birth was so far removed from their thoughts that they didn’t even ask and I didn’t know how to bring it up. They asked how the birth was, and they asked how the baby was, but I think maybe only one of them even understood that baby and I weren’t in the same space. I just didn’t have the energy to tell them if they weren’t going to ask.

Thankfully, since the then toddler had been a determined nurser right through the pregnancy, (it certainly wasn’t down to any help I got from the hospital staff after two days away from my baby) my milk came in on the fourth day, and I was able to exclusively breastfeed baby from then to about 7 months (she wasn’t interested in solids till then. My mother flew in the day before I left the hospital, and really looked after me for the next three weeks, which is when I started to get some energy back. I was still on BP drugs for a few months, although annoyingly my then GP decided (no idea why) that I didn’t need follow up liver or kidney tests, even though the ICU doctors had recommended them. I should have pressed for those, but the ob/gyn at the hospital who discharged me didn’t seem to think it was necessary either, and I didn’t chase it.

Two years on, there are a lot of things I wish had been different, and I’m trying to make sure they are in future. My wonderful littler daughter is still the bright spark in the whole nightmare. I can’t and won’t forget the rest, but I am still working on processing and getting beyond it.

Radio Silence

Very strange – I really thought I’d posted this update a couple of days ago, but there’s no sign of it at all. In short, it’s still too hot (that’ll probably be the case until November, so I’ll try not to complain about it too much) and there’s been local drama going on that has largely distracted me from the whole pregnancy issue, which in some ways is good, as long as I keep dealing with stuff.

I saw the gastroenterologist about 10 days ago, and he’s referred me on to a liver clinic at a local hospital, and told me to avoid paracetamol products and alcohol (neither of which I use even ‘normal’ amounts of anyway, so that’s no issue). He didn’t seem to know a whole lot about HELLP or pregnancy related liver conditions, which I think is why he wants me to go to the hospital, where it’s easier for the doctors to work in a more inter-disciplinary way. (I.e. they can talk to gynecology immediately.) He also had me do new, more specific, blood tests to take to the clinic. From what I can see the new ones look like I’m back in the normal range, but I haven’t been seen at the clinic yet. I went to my appointment on Wednesday last, but it was cancelled at the last minute. They made me a new one for this coming Wednesday, but told me to phone ahead and confirm the doctor is back from his urgent overseas travel, so we’ll see what happens.

In the meantime, my mother has also had some strange liver enzyme results (definitely not pregnancy related), and had to follow up with a specialist. Unfortunately the health service/her insurance where she lives doesn’t have as comprehensive financial coverage as we do here, so I’m thankful she can afford what she needs, even if it’ll potentially cramp other things. I’m even more thankful that our national system is as good as it is, so that my only financial consideration is the time I have to take off work for appointments (the wasted one last week was annoying). We do pay a nominal amount of co-pay for specialist visits, but they are truly nominal, and our basic coverage is entirely means tested/treated as tax, which is how I personally feel such things should be. It is very comprehensive, too. It doesn’t cover regular optometry or dentistry (at least for adults – it covers more for children) but does cover ophthalmology and anything referred by a doctor, pretty much. Only once has the basic package declined to cover something for us immediately, and that was literally a case of, “reapply nearer to the time,” and then they agreed to cover it.

This is awfully cutesy, but honestly I’m not keeping track of exactly where I’m up to (in weeks and days) in this pregnancy, so will let a tracker do it for me. Colours etc are no indication of anything – this was just the least ‘baby’ one I could see. I’m still not entirely adjusted to that idea. I’ll get there. I hope.
Pregnancy tracker.

Saw the new Ob/gyn…

… and I think I like her. She took her time, and listened to me, and seemed interested, and actually wanted to follow up on things. She’s in walking distance of my home, too, which means less than half the travel time, and no annoying waiting for the bus.

She said everything else was fine, but my liver enzymes are high, so she’s referred me to a gastroenterologist to follow up on that, because they shouldn’t be, at this stage. She seemed very unimpressed that I hadn’t been referred to one as general follow up on HELLP, so I feel much more confident about sticking with her as my regular one after all this, too. She also spent time actually talking to me about the various optional tests that the insurance company subsidises but doesn’t fully cover, so I can make up my mind on those.

Two steps forward, one step back

I did a lot of traipsing about in the sun today, but was definitely reminded of how much more effective it is to speak to the administrative staff in the clinics, rather than the central call centre staff for the medical insurance network.

First appointment was the really frustrating one – I turned up on time for my appointment with the new ob/gyn, to find out that it had actually been set for yesterday (when I told them I couldn’t do) and that she is only in two days a week, and Thursday isn’t one of them. I did get to print out my blood test results (although I could have done that later, too), but it was still annoying. The receptionist there was sympathetic, though, and after suggesting generally making appointments online, if I have trouble with the call centre, made me one in person for next Tuesday.

Then in the afternoon it was my first ultrasound, which went well. (There was a quiet but not-so-nice incident before it, among some of the other people waiting, but that isn’t the topic of this blog, even though it does keep playing on my mind. Let’s just say that politics and racism should not be issues in the ultrasound queue.) There was a definite (single) foetus, with a heartbeat and a head, and at 2cm long, on track for 9 weeks precisely, which fits the probable date of my last period. (Forgot to write that down at the time.)

So now I have to believe it, I suppose!

On my way out of the central women’s health clinic, I asked the receptionist (who seemed in a rare good mood, or maybe she just likes having her advice asked, rather than being treated as a pure paper-cruncher) to suggest doctors with specialist knowledge of pre-eclampsia and/or HELLP syndrome. Her response to that was to confirm I was talking about high-risk pregnancy care, and to offer to make me an appointment with a high-risk doctor there, even though I told her I don’t have a referral for that yet.

So I haven’t seen the new regular ob/gyn yet, but I have a proper appointment with her for next week, and with a high-risk one the week after, and both the blood tests and ultrasound out of the way. Of course, I barely got any of the work I’m paid for (hourly) done today, since after all that I was shattered and slept all evening (it’s the middle of the night now, so I’ll go back to bed after I post this), but I’ll make that up.

As much as I could tell as a complete non-specialist, the blood results looked fine. My platelets were good – up at my normal from my platelets donation days. Obviously I’ll let one or both doctors confirm that, but at least there’s nothing I’m panicking about.

Children are strange

Her whole life, including the winter she was born and the depths of the three since, my elder daughter has kicked off any kind of bedcover, and preferably bedclothes, no matter how cold the weather or the room. (This is the kind of child baby sleeping bags are wonderful for.) Tonight, though, I went into the bedroom and couldn’t see her at all. In the middle of a summer heatwave she unearthed a full quilt, and wrapped herself entirely up in it (including draping it over her face)!

Obviously as soon as I found her that way I pulled it off her, and she’d evidently been able to breathe fine, but she was dripping with sweat. I stayed in the room with her for most of an hour while she cooled down (still asleep the whole time) and longer, and then got DH to reassure me she’s not breathing too fast, so I’m sure she’s fine, but it just reminds me of all the reasons (good and bad, large and small) I want to be around for my girls, and my husband.

Seriously, I don’t let myself worry about actually dying (although it’s a possibility, if the HELLP recurred badly), but I do worry about being in hospital for extended periods of time, being ill or incapacitated, even temporarily, and so on. A day or so is one thing (I go out to work, and socialise with my friends) but the unknown and unexpected absence is scarier.

My DH is a wonderful father, and better at many of the day to day things (cooked meals, bedtimes) than I am, but that doesn’t mean our daughters don’t need us both. Need me.

Dissatisfied

DH and I went to a first appointment with a new obstetrician/gynecologist this morning, and were underwhelmed. I got the forms for initial blood tests (plan to do those in the morning) and dating ultrasound (booked for next week), but I’m going to try another doctor. When we started by pointing out we’re pretty scared at the moment, then not asking for details of exactly what happened, or previous medical records, is not a very reassuring precursor to saying that it probably won’t happen again, because it mostly occurs in first pregnancies. Oh, but it didn’t happen in my first pregnancy, so obviously that doesn’t work for me, does it?

Oh yes, and despite saying I probably would need more visits and monitoring of blood pressure than regular, he didn’t take my bp today (hm, perhaps he did notice I was getting extremely stressed at that point and it might not be representative), or suggest going back sooner than six weeks from now, even to the nurse’s station. I wasn’t even comfortable to ask most of my questions, and that’s rather essential, I think. He didn’t even ask/check my weight, for a baseline for pregnancy gain, or as a pre-eclampsia/HELLP risk factor.

About the only vaguely specific thing he did say is that he doesn’t think there’s enough evidence that aspirin helps as a preventative to prescribe it to me.

I should have just insisted on a referral to a high-risk doctor, whatever his opinion, but I stupidly didn’t, so we’ll have to go through all this again. This …annoying person didn’t even put the notes he took onto the computer system (although he was reading previous ones from other doctors), apparently preferring hand-written cards.

I don’t go to a doctor to be treated as a generic pregnant woman. I want to be assessed on *my* history and symptoms, not the general statistics you think you might remember.