Planning for emergencies

Why it keeps happening is unexplained, but it does seem that we can expect it to keep happening.

After week of normality, I experienced another big bleed on Thursday night, in the middle of the night. I had been out for a lovely evening with friends and my husband had been in to London to see a band. He was home, I got up for a glass of water at about 01:30 am. We had a brief chat about what nice evenings we’d both had, and then, whoosh, I was covered in blood again.

We knew what we were supposed to do. I phoned the labour ward and explained the situation. They told us to come in. Since the bleed seemed to have stopped and there had been and was no pain whatsoever, I drove. Whilst my husband wasn’t drunk, he had had a couple of drinks during the evening, so driving would have been unwise. I specifically asked the duty midwife whether it would be OK for me to drive – had the advice been ‘no’, we would have taken a taxi.  I hasten to add that, at 28 weeks, I really don’t think its unreasonable to carry on with some kind of normality. However, under the circumstances of constant uncertainty, we have now reviewed this high risk ‘going out’ policy.

On the way to the hospital we saw an owl, which was pretty cool. But we were rather too preoccupied to really enjoy our Springwatch moment.

Upon arrival we were shown into the maternity triage area and I was treated to the usual procedures of monitoring, blood tests, cannulation, internal exam, showing people the contents of my underwear etc. This time we even got a scan. Was I in pain? No, except for the needles and intimate examinations. This, once again, didn’t seem to be the onset of early labour. Whilst we were being seen, another lady was brought in who was in labour. I think that this was the first time that my husband had ever heard someone in pain like that before (i.e. in real life, not how its portrayed on the telly). I think he found it really rather alarming.

By about 5, it had been agreed that rest and monitoring were the way to go, However, the labour ward was full, so we were put in a delivery suite for the remainder of the night. I had the bed, my husband had a beanbag on the floor. He commented that the beanbag was somewhat lacking in beans. We put this down to NHS cuts. (Bloody Tories!) I was also given an(other) anti-D injection due to my Rhesus -ive status. Apparently you can’t overdose someone on this, so I can expect another jab every time I’m in, as well as the routine one I’m getting next week from my midwife.

We got a couple of hours’ sleep and then were transferred to the Observation ward. This was a private room, which was nice. More monitoring, and baby continues to do well as far as heartbeat and movement are concerned. I was not being fed, which is of some concern, because that means that someone, somewhere thinks that surgery could still be on the table (so to speak). My husband went in search of food (he brought me back a croissant, but I had to wait to get permission to eat it). As we awaited the doctor’s rounds, we realised that we could overhear the phone calls being made at the desk just outside my room. The patient under discussion was me, and there seemed to be some degree of disbelief over the position of my placenta. The doctor doesn’t believe that my placenta praevia could have resolved so much between 20 and 27 weeks. This is consistent with what we were originally told; it might move, but it has a long way to go, so we shouldn’t hold out much hope of that happening. But, according to the scan last week, move it has. She’s not convinced and another scan is required. I am sent, by wheelchair, to radiography. It’s weird being wheeled around. i feel like a bit of a fraud, but I don’t have a choice.

The scan confirmed that the placenta has moved, and that everything is looking good. There was still no obvious bleed site, so, really we’re no further forward, except for confirming something that today’s consultant thought was unlikely, but which was, in fact, true.

After this, I was allowed to eat, and the staff on the observation ward arranged for me to be sent upstairs to the slightly less observationy communal ward. They just needed to check that the bleeding had stopped. I was happy to comply, and sat up, and Gush. The clock started again. I’m not going anywhere for 24 hours. On the plus side, I got to stay in the private room, which is good because I’ve just bled all over it.

Fortunately, the rest of that evening and night passed without further incident, although I did manage to get a couple of hours ‘off cannula’ in the evening. I got a new one before going to sleep, though. No-one wants to have to put in a new one in a midnight emergency. I was told by the evening doctor that no-one knows what keeps causing the bleeding, but that they’re going to treat it as if it is the placenta. Better safe than sorry. It’s a balancing act; as long as the baby is fine, they’ll leave it in as its far better off where it is. However, if the baby starts to become distressed, or growth doesn’t carry on as normal, it could mean that the placenta is failing, and then they’d take the baby out as, at that point, it would be better off in an incubator. Hopefully those things won’t happen, though.

Another morning, another doctor. The same ‘we don’t know so we’re going to be cautious’ message. It was the same doctor that we saw on Tuesday. No, it looks like I can’t keep away, lol. Actually, I do keep running into medical staff when I’m out and about (by which I mean walking between my bed and the toilet), and they greet me like old friends. I’ve been here too long.

So, my current instructions are to take it very seriously, keep as active as I can but don’t go too far from the hospital. I can go back to work (assuming that work will have me) as long as I come straight back to hospital if there is any further pain or blood or anything else that might cause concern. As long as my and the baby’s obs are good on the evening rounds, I will be free.

I spent the rest of the afternoon upstairs on the regular ward. The food, which has been good up until now, was rather hit and miss on Saturday and I got an egg salad sandwich in place of the ordered macaroni cheese, but I was hungry, so I ate it. Dinner took its sweet time, too, and by the time it arrived, I was laying flat so that they could listen to the baby’s heartbeat on the monitor. My husband had to spoon feed it to me in bit size chunks. As if this wasn’t a strange enough experience, at the same time the lady in the next bay, separated from me by a curtain went in to labour very quickly after her baby kicked her hard enough in the cervix to break her waters (she was overdue, so they were probably ready to go). Less than metre away, my husband was leaning over all the machines trying not to get ketchup on everything whilst this poor woman was begging for an epidural. It wasn’t funny really, but it was such an odd situation, that, whilst we and I were trying to be quiet and discrete, we were failing because we kept getting the giggles. You couldn’t make it up, but there is a comedy sketch in there somewhere.

I’m back home now, enjoying the comforts that that entails, hoping we don’t have to return to hospital anytime soon.

48 hours on the labour ward

I am a walking life support machine. For the moment, this is my only and most important function. It’s a really big responsibility, and, on Tuesday of last week, it looked like I might be breaking down. The diagnosis at 22 weeks of placenta praevia (PP) meant that any spotting whatsoever had to be taken very, very seriously indeed. The issue with PP is that, if you get a bleed, it is usually a precursor to future, more significant and serious bleeds. These are caused by weakening or tears in the placenta, which, if they become worse, can cause it to stop functioning. To manage the risk to both mother and baby in the case of increasingly catastrophic bleed scenarios a decision is usually made, once a bleed gets to about a pints’ worth of loss, to perform an emergency c-section and put the baby in an incubator. The very grave warning to take my diagnosis of PP very seriously indeed was written all over my notes, but no spotting had manifested, and things seemed to be going very ‘normally’.

Until Tuesday of last week, when at 26.6 weeks, with a lack of pain that would almost have convinced me that I had experienced a failure of bladder, I found myself soaked in blood. I was asked for descriptions of how much several times on Tuesday evening, and the best I can do is to say that my underwear was soaked, but it didn’t hit the floor. This equates to about 30ml, apparently. Enough to raise all kinds of alarms.

I was at work, fortunately not teaching (it was the end of lunchtime), and I had gone out of my office to find a student from my tutor group whose birthday it was as I had bought a cupcake for him (a little tradition we have in our class), but had forgotten to give to him in tutor time. Not an especially strenuous activity. Having delivered the cake and birthday greetings, I felt that something was ‘not right’ and went to the toilet next to the school matron’s office. There, I found that I was soaked in blood. I had already given matron the number of the labour ward so that it would be on hand should anything happen such as this, given the PP diagnosis, and I asked her to call it, and an ambulance. I felt surreally calm; I had been warned that this might happen, and now it was happening, and so I had to deal with it. I phoned my husband. There is no way of not sounding alarmist when you tell your husband that, at just under 27 weeks pregnant, you have experienced a significant bleed and are awaiting ambulance transportation to hospital. The same can be said for telling your mother, too.

By the time I had spoken to the midwife at the 999 call centre about the details, the ambulance had arrived and the bleeding had subsided. It was a paramedic and car, rather than a full-blown ambulance, and my blood pressure etc. was taken. Having decided that I could be taken in the car, and after the laying down of an absorbent sheet on the passenger side, I was transferred to Stoke Mandeville labour ward. I was feeling, as usual, some discomfort under my ribs (totally unrelated muscular issue which I have been experiencing for a few weeks), and I kept reassuring the driver that the associated wincing and facial contortions were down to that, and that I was not going into labour in the car.

My husband arrived about 10 minutes after I did, and, from the look of him, was in a much worse state of shock than I was. I was seen and assessed quickly by a midwife who kept calling my husband ‘Dad’ which I could see he found confusing as its not yet a term of address that he has associated with himself. Having been poked and prodded by doctors, we were visited by a team of consultants, the most senior of whom informed me that ‘my maternity leave had just started’ and that I could ‘expect more and heavier bleeds’. I wasn’t going anywhere tonight.

I was installed on the labour ward and my husband dispatched to fetch the overnight bag which we really should have packed when we were given the original PP diagnosis. I was cannulated, given a fish and chip supper, a raspberry pudding and an incredibly painful steroid injection in the backside. My assessment of these developments; if you are in hospital and they cannulate you, you are not going anywhere. If they feed you, they are not anticipating operating on you immanently. If they give you a massive injection, it still has the potential to all get a bit serious. Steroid injections are given when there is a chance that a baby might need to be delivered early. These injections are given, 2, 24 hours apart, to assist with the development of the baby’s lungs in order that respiratory complications after birth are minimised. Better to have them and not need them than need them and not have them. They chuffin’ hurt, though.

Throughout these proceedings the baby was monitored and was active, healthy and apparently completely unbothered by the medical emergency in which is was involved. This was obviously very reassuring.

That night on the ward, I hardly slept and kept imagining that I would find myself covered in blood at any moment. That didn’t happen, though, and I was relieved to be fed again in the morning (so surgery still not immanent). I was told I would be scanned at lunchtime and my husband was going to return in time to accompany me to that. However, a slot became available at about 11am, so I went on my own. The news was good. The PP has resolved, the placenta iss now a good 2cm away from the cervix; a ‘safe’ distance. Even better, it showed no signs of damage or bleeding. In fact, where the bleed had come from was a mystery, with no obvious bleed site anywhere to be seen. The baby, meanwhile, continues to grow well, and seems active and healthy. In the absence of evidence of anything more sinister, the bleed has been attributed to a burst varicose vein. However, the sonographer noted that my cervix has become shortened (thankfully still closed), but this gives us something new to worry about. It seems that we have exchanged the PP diagnosis for the possibility of early labour. It’s less dramatic, but not the ‘normal’ prognosis that I was hoping for.

Back on the ward for a second night, I was fed again (yay!) and the cannula was removed. Red alert had officially been stood down. I still had to endure round two of the pain-tastic butt jabs, but, better done than not done. The consultant has said that the shortened cervix presents ‘no significant clinical concerns at this time’, and I have been released to laze about in my own bed. We have to go in and see another consultant on Tuesday afternoon to find out what the plan will be for the rest of this pregnancy – house rest, bed rest, carry on as normal etc. and I am, of course, on constant vigil for anything else untoward, which would require immediate return to hospital.

The only one who has been seemingly unaffected by all of this has been the baby, which, on Thursday morning gave myself and the duty midwife the proper run around (at 27 weeks, it still has plenty of room to change position) when they were trying to do its obs. It was being very uncooperative; it wouldn’t stay still and kept kicking the doppler probe. I had to literally chase it round my tummy with the machine for an hour and still we couldn’t get a good reading, although it was obvious to all that baby was alive and well in there. I guess that’s the price you pay for giving your baby steroids!

So now its just a case of waiting to see what happens next and hoping that its all normal and non-emergency in nature. Stay in there, baby, not too much longer to go!

If necessary use the emergency exit

I am happy to report that baby’s re-scan went well today. Spine and kidneys all present and correct. Baby was asleep when the scan started, but awake by the time it was over (well, so would you be if you were being prodded and poked and blasted with sound waves). Growth is on track, and he or she (we haven’t found out) seems perfect – and looks like a real baby (there is no reason for me to be surprised by this, but somehow I still am).

The less good news is that the placenta is really very low, and, although many low placentas do move up in later pregnancy, it seems that mine has quite a long way to go – 7 centimeters. We saw the consultant and he has officially given me the diagnosis of placenta praevia (http://www.nhs.uk/ipgmedia/National/Royal%20College%20of%20Obstetricians%20and%20Gynaecologists/assets/Alow-lyingplacentaafter20weeksknwonasplacentapraevia.pdf). He is already talking about a planned c-section at 36 weeks or so, which brings the EDD forward to the week of the 27th May. That’s almost a whole month! (!!!!!) I’m not too worried about that, per se, because it’s pretty much term, and they can give me injections to help accelerate the development of the lungs etc., so the baby will be able to manage. To be honest, I just want it to be OK, so I’ll take whatever advice I need to take to achieve that. I don’t think I’ll feel any ‘less of a woman’ if it ends up coming out through the sun roof. It’s not about me, it’s about getting this baby healthily into the world, whatever it takes. I’d rather avoid hospital scares along the way, but I’ll do what I need to do to achieve that objective.

We’ll be scanned again at 32 weeks to see what’s happening and I expect the final decision will be made then. Assuming, that is, that nothing untoward happens in the mean time; we are on alert to go straight to the Labour Ward if there is any spotting of any kind, where I’ll me monitored for 48 hours to check it isn’t a more serious bleed. But hopefully nothing like that will happen. (Please don’t let anything like that happen!).

Apparently, the risk factors (that could possibly affect me – given that I am not a smoker or a cocaine user, I can rule those out as possible causes!) are age (a factor at 38) and previous c-sections (no) and ERPCs (4 + 2 hysteroscopies, including the surgical removal of a septum). Has my surgical history caused this placenta to mis-grow? Even if it has, there’s nothing I can do about it now.

Wish us luck for an incident free path through the next 3-4 months, and getting baby safely into the world in either June or May. Whatever it takes.

A look inside

This week has been a week of scans.The letter that invites us to the routine 20 week anomaly scan is really quite a scary read. It lists a range of unpleasant things that could be missing or damaged with your baby, and the percentage chance of them being detected. (If they are present is what the letter doesn’t say). The wording is alarmingly ambiguous, making you wonder, on first reading, what the chances are that your baby might have all of the unfortunate conditions listed. An addition of the sentence ‘These conditions are rare, however, if present, these are the percentage chances of your sonographer being able to visually detect them’ would make it read slightly better.

My nerves for this scan had been building for some days, but the reassuring kicks helped me to think that things would probably be OK; nothing that wriggles about this much could be poorly. If this optimism sounds like the prelude to the revelation of some terribly sad news, don’t worry. It turns out there’s a little person in there, with two arms and two legs (with reassuringly average length thigh bones). Parts of the developing brain are picked out and measured; all present and correct, head looks normal, as does the face, and it all seems to be proportional, size wise. Abdomen, also fine, with stomach and bladder clearly visible. All four chambers of the heart are busily pumping away and eventually a good enough still image is taken for our records. But, for all it’s wiggling and kicking, this baby doesn’t want to turn around. I am sent to go for a wee in the hope that my moving will encourage baby to move, but it doesn’t. So, whilst we’ve seen the spine, the image wasn’t sufficiently clear to complete the scan report, and the kidneys also need a closer look, so we’re back in 2 weeks for another scan. The placenta also seems to be lying a little low, and although it will probably correct itself, we are also going to need to be re-scanned at 32 weeks just to make sure it’s moved. If it hasn’t we’ll be looking at a sun roof delivery. But that’s ages away.

The extra scan isn’t a problem; I’ll be on half term so no need to ask for more time off work (which isn’t a problem in itself; work are being great), and we were due back in to see the consultant on that day, anyway. The administrative dis-communication with appointments this week and last has been quite special. Last week I was offered an appointment at High Wycombe hospital to see the obstetrics consultant. This would have been the day before the scan, which was going to be at Stoke Mandeville. I was able to make the swap between hospitals to see a different obstetrics consultant, but for 2 weeks time, and now we have been able to organise the repeat scan for the same day as the consultant appointment, too, so it all seems to have worked out.

The other bit of me that’s needed to be scanned this week is my armpit. One of my boobs (which which are going for some sort of world record) has grown into my left armpit, and is a bit lumpy and sore. It’s been like it for years, but it’s got worse since I’ve been pregnant, so I’ve been sent along to the Wycombe breast clinic to get it checked out. The appointment I was allocated? Within 10 minutes of the scan appointment at Stoke Madeville on the same day. They were happy to change it, but I do think that some kind of patient records information system would have been useful here. The breast clinic is excellent, and I was scanned, seen and reassured in one afternoon. They were running late, and I was there for a few hours, but it was OK. Better that than some other kind of bad news.

So, happy mummy, happy (stubborn) baby. And we get two bonus sneak peeks. Meanwhile, I’m still getting kicked, and, since most of the kicks are on the left hand side, I’m guessing baby is still pretty comfortable where he or she is.

Telling people

Written 20th December, 2014.

We’ve finally reached the part of this journey where society says we can let people know what’s going on. Thanks for the green light, world! On Tuesday we had our 12 week scan, and baby is literally alive and kicking (fidgeting, he says). It’s growing fast, too, and we’re now 12.6 when we thought we were 12.4 (which was advanced from being 11.4 when we thought we were 11.1). The NT measurement is 1.4 and, whilst we still await the blood test results, we are beginning to consider starting to think about possibly relaxing. A little bit. Maybe. PHEW! I have a photo, but I won’t post it here. I’m still in such a state that I find it hard to see other people’s photos, and given my ‘readership’, I just don’t think it’s appropriate to post such an image here. We’ve even booked a 20 week scan, which seems extraordinarily confident. I’ve been asked what we call it. No pet names just yet. We call it “assuming all is…”, “if everything…”. We’ll have to do better than that, but not until we’re ready.

There are lots of reasons why I really disagree with this socially mandated tradition of waiting to 12 weeks before telling people you’re pregnant. It’s a way avoiding embarrassing conversations in which you have to ‘un-tell’ people you’re pregnant because your baby has died (miscarriage makes people so uncomfortable – poor them), but I do understand that these are horrible conversations, and women may genuinely want to grieve in private. But, and this is my main objection, the people who are affected my miscarriage are grieving. This is a legitimate human emotional process and it does people damage to bury it. Grieving means that sometimes people experiencing it get emotional angry and withdrawn (and a whole range of other perfectly normal grief responses), and they need support and understanding They don’t need socially imposed secrecy and shame. This, if they’re keeping the pregnancy and then miscarriage a secret, is support they don’t always get. I think this a cruel and wrong. I’ve been lucky to have so many wonderful friends and family around me to give support, but I know lots of women who have kept everything secret and suffered alone. And this says nothing of the partners who’s emotional needs are often even more neglected. Still, at least no-one’s made a social faux pas.

That said, people do say some really weird things to women who have miscarried and some of those are down right offensive (it wasn’t really a baby yet etc.). On balance, however, I think that this is a consequence of people not really knowing what to say. Maybe if everyone was more open, people would get better at not putting their foot in it. So I stand by my original point.

I want to write, however, about another delicate problem, the weight of which I feel very acutely, and to which I don’t really have a solution. This is the problem of telling people who will be upset by the news. Having been on this road for over 3 years, I know lots of people who are in similar situations. I know (because I’ve been there – and if you follow my blog, you’ll have seen the messy outpourings of grief that follow other people’s pregnancy announcements) how devastating Other People’s News can be. It’s not selfishness, it’s self preservation mixed with varying degrees of Post Traumatic Shock and (guess what?!) stifled grief (from all of that not-telling you did to stop people from being uncomfortable when you had your miscarriage). That’s really damaging, and it makes me feel really sad that friends of mine are going though it. It makes me even sadder that, now, I am the cause of this kind of upset to these friends. I’m sorry.

I want to show these friends of mine that I have enough respect for them that I don’t announce in public places where they can’t get away from a social situation, but it also feels like such a breach of trust to call or email someone and bring such upset and anguish into their home, their safe space. It’s such an intrusion. Even writing these blogs caused me to really think about who might see and be upset by them. All I can really say is that I am sorry, and I do get it. I used to feel the same. I hope it will happen for them soon, too.

Risk

Written 13th December, 2014.

Last Tuesday we had what Professor Brosens described as a ‘highly reassuring’ scan. We are now over 11.4 weeks and the baby was leaping and dancing about, kicking and hiccoughing. As I commented to the consultant who scanned me, we’ve never seen one that big before. Every good scan means that it is just a little bit more likely to happen this time. The odds are, as you might say, increasingly are in our favour. But can we relax? Of course not.

Next Tuesday afternoon is The Scan. The Big One. 12 weeks. And we’ve been there before, and it was not a happy experience. Although we’re beginning to turn our minds to the possibility of there being a chicken, we’re still not quite ready to actually count it.

The 12 week scan comes with tests (http://www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx#close) which we both (think we) want (great if the results are good) and don’t want (what if they’re bad?). The consultant gave us a bit of a talking to to ensure the implications of getting those test results. We have been through so much already. Have we considered what the possibility of high risk results might mean for us? She hastily assured us that she had not noticed anything on the scan that made her mention it, in particular, but that she felt that too many people have the standard tests without really thinking carefully about the implications of the results. The first thing to do is to realise that risk is not diagnosis. Lots of people, apparently, don’t understand the difference. So a risk of 1:150 is considered ‘high’, but, of that, it means that 1 baby in 150 with those results would have a condition such as Down’s Syndrome. 149 babies would be fine. It’s still pretty scary, though. We’ve been through so much to get to this point. Would we make a choice to end it? No. I don’t believe that I would even consent to further invasive tests like amniocentesis because of the 1% risk of miscarriage. But I think that knowledge is better than no knowledge, so we plan to go ahead with the screenig next week.

The odds are in our favour (mostly – they were more in our favour three years ago when we set out on this journey, but what can you do about time?). How much more can we take? Could we ever do it again, even if it works out? We always thought we’d have more than one child, but it’s been such a a struggle to get to this point, and I’m not getting any younger, and the risks will only increase.

And I know too many stories. My own sad ones, and the sad heartbreak of other women whom have been kind enough to support me on this journey. You think what I’ve been through is bad? I know stories of recurrent miscarriage that break my heart and chill my blood. No-one can keep their innocence about pregnancy after this.

At the end of The Lord of the Rings: Return of the King (the film, sorry, not got my literary hat on this morning!), Frodo says: “How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand there is no going back? There are some things time cannot mend. Some hurts that go too deep that have taken hold.” We did go back and are in the midst of having another go, but how many times can anyone do this? What has happened to us will stay with us forever. It has made us, in a really fundamental way, different than we would otherwise have been. What’s the cost? ££££ on counselling and cognitive hypnotherapy to try to repair the damage done by post traumatic medical shock. I still can’t look at other people’s 12 week scans on facebook. I think I could be The Old Woman Who Lived In A Shoe, with so many children I didn’t know what to do, and a babybomb scan photo would still turn my blood to ice. This is a terrible learned behavour. I feel sad that I seem to be stuck with it.

What else can I say? Wish us all luck for Tuesday.

Superstition and pseudo-evidence-based hysteria: What recurrent miscarriage has done to my rational mind.

Written 22nd November, 2014.

We keep marching forward, one day at a time. What else can we do? Neither of us are ready yet to think about the possibility that there might be an actual baby at the end of all this. All of our utterances about short, medium or long term planning are qualified with ‘Depending on what’s going on, of course’. I know it annoys him, because he thinks that I think that he’s forgotten that there’s something going on. Or potentially going on. I qualify my qualifications by hastily explaining that, no, I don’t think he’s forgotten or unaware, but, rather, this is my way of not ‘jinxing’ things by foolishly and naively hoping for even one second that it isn’t all going to go terribly wrong again, again. Again.

Rationally, every week that passes means that the chances of success are just that little bit higher. We have now had a ‘good’ scan (i.e. one where the baby hasn’t died) at 8.3 weeks. Anecdotal (perhaps it’s also scientific; the people who I have heard say it say that they have heard it from doctors) evidence says that 8 weeks is a major milestone, as the baby moves from the embryonic to the foetal stage of development. Lots of the things that could have gone wrong have, by now, gone right. Or at least well enough to not shut the whole enterprise of life down. This is encouraging. What’s possibly slightly less encouraging is that that means we’ve had 3 days’ growth in 6 actual days. Funnily enough, I don’t find that I’m too freaked out by this, as I did feel that last week’s scan declaring us to be 8 weeks on the nose was rather over ambitious. I had thought we were more like 7 and a half. Mind you, we were 6.1 only 8 days prior to that. I guess it’s fractions of millimetres they’re measuring, and it’s different people each time making the clicks, so there’s going to be some room for some wriggle room. Everyone seems happy, anyway, and the sonographer didn’t make any mention of ‘slow growth’ on the report. And, actually, 8.3 does fit in almost exactly with my calculated dates. I need to stop looking for things to worry about.

The biggest moment of (post traumatic) insanity came when we realised that we were going to be scanned by The Sonographer Of Doom. I’m sure she’s absolutely lovely, but I can still remember her words almost three years ago when she was scanning me and said ‘Its not good news, I’m afraid.’. I know that there’s no easy was of saying it, but it was like being punched in the guts, and we both remember it, and associate it with her. I silently panic, as if there is, actually, some sort of mystical force at work in the universe (which I don’t believe that there is), and that it’s about to get me again.

Happily, it turns out that it isn’t. The lone magpie I saw on the roundabout on the way here fails again. Quiet my dark superstitious, paranoid mind. She even gave us a photo. He wasn’t too keen on getting it, because, I think, he’s not ready to breathe out and relax, but I thought it might be nice to have (and then immediately thought that it might bring some inexplicable bad luck and wondered whether I was tempting fate by accepting it). Whatever his reasons for hesitating to take the pictre, he says it isn’t because he thinks it’s bad luck. In truth, if we got a scan picture every time we went for a scan, we could have papered the cloakroom toilet with them by now. Given my aversion to seeing the things on social media, I’m not really sure what I’m going to do with it, anyway. It doesn’t even look like anything, except perhaps a potato from space.

Afterwards, we need to negotiate the next scan appointment. The EPU clinic is busy and we are seen to be making good progress. Can we go to 12 weeks? No. I explain that #3 died within days of a 9 week ‘good’ scan, which had seemed perfectly healthy. Worse, the progesterone I was taking (and am taking again), masked any sign that anything had gone wrong and it wasn’t discovered until 13 weeks at the ‘official’ scan. I also explain that I don’t want to have to wait until the ‘official’ scan because the way they have the rooms set up, with large monitors up on the wall in the corner, means that you get an excellent view of your deceased baby (in our case, as a screen grab, left up there even after the scan had been completed) starring down at you from the corner of the room whilst they send someone to fetch the leaflets. This, presumably is in case you forget what’s happened. Oh, and the delivery of the news on that occasion was truly exceptional: ‘Oh, there should be a baby in there.’ No shit?! And me here for my 12 week scan, and all… It’s enough to make you wonder whether they train some of these sonographers in how to give bad news. (Let me qualify this, MOST are EXCELLENT, but when they aren’t, they really aren’t).

I’ve made my case, and the clinic nurse is going to see what she can do. But I do need to book in with a midwife, she tells me. I don’t want to do this, either. More jinxing and bad luck. I don’t like having to text them when it all goes wrong, I plead. You won’t get your 12 week scan in time if you don’t, I am told, in no uncertain terms. Check mate. So, that’s all now booked for Tuesday. It will take about a million years to recount my history. I hope she knows how to ‘manage’ me and my craziness…

All the other signs are encouraging. I permanently feel as though I’ve just disembarked from a Waltzer, and I’m totally knackered. All good, although, as we know, meaningless, really. Still, we must keep moving forward, one day, one week at a time. Baby steps.

Time and money: just one of those things?

Written 15th November, 2014

After another week with very occasional light spotting, my nerves could take it no longer. The two weeks between the 6 week and the 8 week scan, given that babies #1 and #2 went between 6-7 weeks after seeing a heartbeat (normally regarded as a sign that all is on track and well) was making me anxious enough; the spotting was pushing me over the edge. I phoned the EPU and left a message asking for advice. They offered me an extra reassurance scan yesterday. I must say, for all my reservations about going back there, they have been very good to me so far. (Although my husband hates the car park with a passion because the card reader is out of order and the notes feeder doesn’t give change. It’s been like this for 3 years…).

Despite instigating this extra scan myself, I was filled with feelings of dread and doom from the moment it was booked. One of my current problems is that I get tired very early in the evening and end up going to bed at about 9-9:30, but I also get very hungry, so hungry I can’t ignore it, which wakes me up in the middle of the night (I’m a secret night-time yogurt eater). As a result of this combination of symptoms and the stress of the anticipation of the scan, I was laying away at 3 am the two night preceding the appointment wondering how the hell I was going to cope if it all went wrong again. How would I manage work? I am supposed to be leading a school trip next week, who will take the kids? How will I get everything sorted? How will I get the right care sorted for my ERPC, should I need one? Will I trust local services to do it, or will I run away to another hospital? Too many thoughts, driving me mad. I am not enjoying the psychological legacy of three missed miscarriages.

As it turns out, we have actually made time since last week’s scan. We’ve gone from 6.1 weeks (where I thought I was 6.3, and hence assumed all kinds of disasters) to 8.0 on the button, which is about 3 days ahead of where I expected to be. Of course, it’s a matter of fractions of millimeters at this stage, so no-one is concerned. The little heart is fluttering away (and so is the big one!), and we can say that another milestone has been reached. Phew! We were in and out in under 10 minutes today, and even managed to have a tummy scan rather than the undignified internal one (is it weird that I felt slightly cheated? I’m used to getting a closer look…). Although we are not even close to the edge of the woods yet, we are past ‘danger point #1’, and I am feeling encouraged (for now).

What’s the difference? I’m putting it down to the ‘magical’ combination of progesterone (400mg, twice daily) and heparin (those dreaded daily pricks – my husband does them – I can’t seem to find the nerve). I am so grateful to the team at Coventry for putting me on this course of treatment (http://www.uhcw.nhs.uk/our-services/a-z-of-services/consultants?cID=341). I believe that, without it, I would not have got past 7 weeks again. I am more convinced than ever that have not experienced bad luck, but suffered from a failure to properly investigate, diagnose and treat an underlying medical problem. Whilst I realise that funding is a serious issue, I also wonder, on balance, how much has been spent on the 6 lots of surgery I have undergone. I can never know, but my instincts tell me that the treatment plan I am on now might have saved #2.

I still think that taking aspirin as a precautionary measure prior to conceiving #3 may have interfered with implantation sufficiently to allow a Turner Syndrome baby to take hold, and, I wonder whether, had I not been taking it whether that one would have implanted at all. This is all speculation, of course. Lots more medical research is needed with much bigger, scientifically regulated, double blind trials to answers these questions once and for all. I’m very pleased to read that Tommy’s are going to launch a new early miscarriage research centre (https://www.tommys.org/new-research-centre). I expect many of my hunches will be borne out in the coming years, and couples won’t have to endure 3 miscarriages and be fobbed off with the ‘bad luck’ line in years to come. Getting real answers, sooner, if the tests are quick and reliable, and the appropriate treatment available will save a great deal of time and heartache for a lot of couples. I also wish that the long awaited results of the PROMISE progesterone trial (http://www.miscarriageassociation.org.uk/information/research/the-promise-trial/) would hurry up; it would be nice to see what the actual research says about at least some of the medication I’m currently taking!

As for me, I’m enjoying the mental relief I got from the encouraging scan of yesterday for a while longer before new scan doom sets in for next week. We know it can still go wrong…

Pricks

Written 6th November, 2014.

I am a human pin cushion. I have 8 dot shaped bruises covering my thighs and tummy from the daily heparin, I’m having regular acupuncture, because it is relaxing to lay in a darkened room and not be able to move, and now I’ve had a ‘flu jab, too. The ‘flu jab was today’s unexpected bonus, following our second good scan at Stoke Mandeville’s EPU.

I was honestly driving myself crazy with worry about this scan. So much so that strange superstitious thoughts were starting to get more mental air time than is considered sane. For example, does seeing a single magpie and then another, second single magpie make that two for joy or double the sorrow? Oh dear.

I had a moment of dread while we were waiting to be seen that convinced me that history was repeating itself. The sonographer from mc1 still works there and I saw her arrive. She’s probably lovely, but to me she is the harbinger of doom. Get a grip.

No tears in the examination room today, and, once again, the team are lovely. But there is a technical hic of some kind which causes the sonographer to say to herself ‘oh no, lost it again,’ ‘Unfortunate turn of phrase,’ I said. I bet she felt bad. I didn’t mean for her to, but the comment wouldn’t stay in.

She was very nice, though, and found the heartbeat straight away and showed us. Milestone #2. We’re relieved, but by no means confident, we’ve been here before and still lost it. But its a step in the right direction.

The ‘flu jab was a bonus and the midwife who did it asked us if we planned to have our baby at this hospital. We just kind of looked at each other… Baby? It still doesn’t really occur to us that all this jabbing and scanning and waiting might actually result in an actual baby one day. It makes me sad that this has happened, but we are the victims of circumstance.

Two weeks before my next scan. If I count that in pricks, that’s 14 injections and many more acupuncture needles. What a way to carry on, but carry on we do, until something makes us stop.

Hold on, hold tight, hold your breath

Written 3rd November, 2014.

We spent several hours at Stoke Mandeville hospital on Thursday morning. We were seen and I was scanned by 9 am, and the sonographer and team were lovely. They really put me at ease, which was great because I had been really dreading going back to that hospital. Put it this way, I avoided it almost entirely (except for the night in A&E after the Massive Bleed) and went to UCLH for all of my scans and for my ERPC, too. I wonder what my notes say about me; I imagine I’m earmarked as a ‘difficult’ or ‘demanding’ patient, but that they need to be nice to me (I am sure they would be anyway). The clinic nurse recognises us from MC2, which is rather sad. For all of us.

I feel like a coiled spring; an injured animal. It would take much to set me off, to make me walk out the door and straight back to UCLH. I just trust them there. But Stoke Mandeville is what I’ve got, because the consultant here has agreed to follow the Coventry plan, which St Mary’s wouldn’t have done because they don’t think progesterone and heparin are right for me. With St Mary’s, we’d be letting nature take its course. They would have done a repeat TEG blood test to see whether my blood gets extra clotty during pregnancy, but that wouldn’t have happened until 6-7 weeks, but since my first two babies died at about that time, that seemed too little, too late.

I am very grateful to my GP and to the consultants at Stoke Mandeville hospital for agreeing to take me on on these terms. Nevertheless, this arrangement of following the Coventry care protocol is not without it’s challenges. I’m getting heparin injections and I say they’re to be given from an in-uterine scan but Stoke Mandeville say they usually give it after a heart beat has been seen; when the pregnancy is considered ‘viable’. This is resolved by me going into the car park to get some phone signal so that I can download the letter from Professor Quenby from Coventry and show it to the Clinic nurse. So I got my prescription, because everything on the scan looked good. I was a blubbering mess before I’d got my trousers off. But for the first time, we’re bang on for dates (previously we’ve had a bit of ‘Are you sure?’, ‘How regular are your cycles?, ‘Could you have your dates wrong?’). So that’s positive.

Having established that I could have the heparin, we then went to the pharmacy to collect it. Having collected it, we were asked who would be showing me how to inject? And where were we getting our sharps bin from? Errr, you? Or we could hope for the best? Apparently these were not the right answers. Back to the EPU. They think the pharmacy would have sorted the care pack out. Someone is despatched to get one. When we get it, I ask whether the nurse can do the first one. At first she refuses, but then, because I’m special (stubborn) and she is kind (and tired), she does it. Thank goodness for breakers of the little rules.

The worry is, I’m still spotting, which doesn’t help with the optimism. It’s very disconcerting, you know, trying to teach whilst wondering whether that feeling is the first sign that your baby has decided to make an early exit from your body. Can you imagine the playground gossip of I had another Massive Bleed in the classroom?

Next scan Thursday. Into the danger zone we go again.

On the plus side, I feel sick.