Not me

I ended up spending the night at the hospital to Thursday morning last week, with my two-year-old. We’ve all had colds and coughs for a few weeks, but on Wednesday evening she was acting really really dull. Not wanting to eat or drink or play or even tell us she was uncomfortable (she’s been pushing to use the toilet the last couple of weeks, although we’re keeping her in nappies between toilet trips while we’re between working washing machines). We had gone out for supper, and she tried to express some enthusiasm at the restaurant but just didn’t have the energy. She hadn’t seemed so bad before we went out, but by the end of the meal both DH and I were agreed we should go straight to the walk-in clinic around the corner and get her checked out.

There they took her temperature (low fever), listened to her breathing and then gave her a chest x-ray (DH took her in to that, since I’m pregnant, so he heard the radiologist say definitively that she had pneumonia, which I didn’t), a blood test, and then an inhalation treatment. She *really* perked up after the inhalation, and guzzled down the orange juice in the bottle she’d been clinging to like it was a teddy, and wanted to climb and play. Still, the doctor at the clinic wasn’t happy with her breathing (still too fast and laboured, so gave us a referral for the hospital, but suggested we not go there en famille. Since it was then midnight, DH took the four-year-old home to bed, and I took the younger one to the hospital. I gave them the referral, and told them what the clinic had said, but they never seemed to pick up on the pneumonia diagnosis, and just gave her paracetamol and a bunch more blood tests for a now much higher temperature, and then had us stay till morning. I wish I’d pushed them on that, because they simply sent us home in the morning saying it was a simple virus, and we didn’t end up going to her regular doctor until today. He wasn’t exactly happy at the idea she potentially had untreated pneumonia for five days, and said she needed to start strong antibiotics immediately, which obviously we followed through on. He did say she seems very well for that, but not well enough. Hopefully the antibiotics will help her get completely back to herself this week.

So more to feel guilty about, then.

Life isn’t a competition

A few things have come up this week that bring me back to an underlying aspect of my stress and distress: while a lot of objectively difficult things have happened for us over the past few years, for each and every one I know people who’ve had it far harder, so how can I complain?

I mean, I’m happily married, with two wonderful, healthy and intelligent daughters. I have a full-time job where I seem to be well-regarded and being given ever more responsibility, and in a country and position where we have the medical care we need, completely affordably, to look after me through this pregnancy, and all of us through whatever. We have a home that keeps us warm and sheltered, in an area with great neighbours, and mostly reliable utilities. The ongoing medical issues we have are things we can live with, and don’t block much/any of what is really important to us. I get three months paid maternity leave, by law. We make enough money to keep us afloat. So how can I complain and worry?

On the other hand, I do have legitimate worries what will be with the remainder of this pregnancy and its aftermath. This apartment is already bursting at the seams and falling apart with four of us in it, so we need to move, which means I/we need to find somewhere else and sort out all of the logistics. And we need to do that ASAP. I do worry if work will learn to get along without me quite happily while I’m on leave, and what that might mean for me. While my elder daughter’s CHD barely affects her, it does create a family history, and I don’t know who else that could impact. (My little brother and his wife are thinking about having a child in the next year or so, and I have no idea if this ‘counts’ for them. It certainly will for my daughter(s) in a couple of decades or so.) Similarly, DH and younger daughter do fantastically well with their visual impairments, but again, I don’t know how it might affect her through school and beyond, either academically or socially. (They’re both always going to have nystagmus and a head tilt, even with the surgery they’ve each had.) The fire we suffered outside our apartment a couple of months ago didn’t leave any permanent damage, thankfully, but it was more than scary, and I’ve had enough of my family ending up unexpectedly in hospital, even when they get out within hours. To move to the decidedly more minor, we’ve been at least two weeks with a dead washing machine now, and I’m sick of handwashing the essentials and doing without the rest.

There’s more, but I really don’t want to go into my litany of woes. It upsets me. So I keep bottling bits of it, and then my poor beloved DH wonders why I occasionally boil over and take it out on him.

Pretty sure (and have been for months, but just haven’t got it sorted, because that’s one more thing to do and I already have too many to cope with) that I, and possibly we, need some kind of counselling just to process all this stuff and move through it. The pre-e/HELLP stuff, and trauma from both births is huge for me, and terrifying at the moment, and everything else is just kind of piling on top of it.

Here we go. I’m opening up my emotions enough that I’m starting to cry. So most likely I’ll shut it down again and finally try to go back to bed, and then muddle through another day.

Goodnight.

Pregnancy ups, emotional downs

This week, last month, summer and autumn have involved a LOT of traumatic events locally, which I haven’t gone into here, as they aren’t the focus of this blog. They have taken my attention, though, which is a lot of why I’ve written so little. I just haven’t had the mental energy to either fret about or enjoy this pregnancy.They also pulled me out of the running and other exercise I was doing in the first trimester (my DH felt it got dangerous to run alone late at night, and asked me not to, and it was too hot during the day, and although I joined the gym, I really didn’t enjoy exercising there very much), and it’s been really hard to keep up my energy levels ever since. I spend a lot of time feeling exhausted.

On the other hand, my medical test results have mostly been good. I did the follow-up ultrasound on the excess amniotic fluid yesterday, and while there is still a tiny bit too much, it’s nowhere near as bad, apparently. The doctor told me to go back in two months (ie right at the end of the pregnancy) so they can see how it looks before the birth. I had actually been wondering if there was an improvement in this, because I’ve been feeling more kicks and other movements, and feeling them more all over.

Also this week I started a series of dental hygiene appointments at the local dental school. A second (of two) year student on a local parenting group asked for patients, and it seems a very good deal – a single cheap price for multiple in depth appointments completely under supervision. I really haven’t had dental care since I moved here, so this would be a good thing. Both my (student) hygienist and her supervisor stressed how important tooth care in pregnancy is, because gingivitis can lead to low birth weight and premature labour. In the health questionnaire at the beginning I was asked about present or previous instances of high blood pressure or liver issues, so mentioned the last pregnancy. I very quickly gave up on trying to tell them about HELLP, and focussed on the pre-eclampsia having led to both, but being fine for now and carefully monitored. In the end they just accepted that and moved on, because it doesn’t seem like either should really be affected by this treatment. I was somewhat bemused that neither of them knew what pre-eclampsia is (let alone HELLP), and only the student (who has two daughters of her own) had even heard the term before. On the one hand, I’m delighted she didn’t need to know, for her sake, but in case she might want further children I hope she at least knows symptoms to get checked out, even if she doesn’t know what they might be from. I have no idea if her supervisor has children or wants to, but same for her if so.

I am here

I keep thinking I’m keeping this blog much more up to date than I am. Where are we? I’ve had a LOT more medical appointments, and mostly everything looks fine, although I’m being followed up for excess amniotic fluid. That meant lots of blood tests for nasty infections and things, none of which I seem to have so far, and going straight to the three hour test for gestational diabetes, rather than doing the usual one hour test first. I just did those this week, so I haven’t been back to the doctor after them yet, but from what I could see/look up online, I don’t appear to have GD or anything else. So still no idea why the extra fluid, but I’ll go back to the doctors next week, probably, and see what they think.

I’m assuming that’s why I don’t feel so very many kicks, even though at every ultrasound they’ve said baby is very active indeed. When I lie down I feel a lot, and those I do feel during the day are nearly all at the top or bottom, so I think there’s just a lot of room to swim in the middle, and baby’s not hitting the sides so much.

Apart from the amniotic fluid, and some weirdnesses with leucocytes and lymphocytes, that my GP had me check for a UTI with (negative), everything looks good. My monthly blood tests show my liver results staying normal, and the anatomy scan and foetal echo showed all of baby’s organs developing well, and on schedule. (I think on average we were two days from the expected developmental age, which is basically spot on.)

We do the echo because our eldest daughter has a ventricular septal defect (VSD), which doesn’t affect her at all (no treatment, therapy or restrictions) apart from going for a cardiology check-up every couple of years to see has she finally grown out of it. It does apparently very slightly raise our risk of having another child with a congenital heart defect (CHD), so we do the extra scan with a paediatric cardiologist. He said he can’t rule out a VSD as small as our eldest has at this stage, but he has no reason to suspect one, let alone anything worse, and we already know that a tiny VSD isn’t exactly a major problem.

Most of the time we forget the nearly four-year-old has it. Just when she gets examined by a new doctor we mention it, so they don’t get worried by her slight heart murmur. We do NOT mention it at her nursery, dance class, or any other programme she takes part in. There’s no need to, and from what we read online from other parents, it’s better not to, as occasionally people like to take it upon themselves to restrict the child’s activity, which is the last thing she needs! I saw advice that if a form asks specifically about heart issues, the thing to do is write, ‘normal’, (which it is), so that you’re neither lying nor causing uninformed people to panic.

None of which is to minimise in any way the seriousness of other CHDs. I have a couple of friends with children with very severe heart issues, who needed surgery within days of birth, and in some cases need ongoing surgeries as they grow. Thankfully for us, our experience just gives us a tiny amount of extra empathy for what they deal with.

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.