Dear Baby

You’re there. You’re really in there, inside me. And on Saturday, your Daddy and I saw you properly for the first time.

We’ve known that you were there for a little while. There was no doubting the second pink line from the moment it appeared. And definitely no doubting the digital test that spelled out the word “Pregnant”.

But I was so afraid that you might not still be there, nearly eight weeks later.

So when the sonographer pressed her little wand in to my stomach and you instantly appeared on the screen, I started to cry. Your little heart was fluttering away and I thought that mine would burst right out of my chest. You may have looked all grainy, in black and white, but we could see your nose and your lips. You were kicking your tiny legs and waving your perfect arms at us, as if you knew we were spying on you in there.

Baby, you are so, so wanted. We already love every tiny inch of you more than I can possibly find the words to describe. We’ve been waiting for you for a while. Now you’re inside me, and in just six months we’ll get to meet you.

Enjoy it in there little one, and grow big and strong. Only, not too big, OK kiddo? Because I’m doing everything I can to keep you safe.

Love always… from your Mummy

And Baby Makes Three

Just the very existence of this blog would be a very big surprise to my fifteen-year-old self. I’d only just about heard of the internet at the age of fifteen, the phase “weblog” had yet to be coined, and it would have seemed very strange that some day I’d be publishing my most intimate thoughts for just about anyone to read if they so choose. But that isn’t what would surprise the younger me at all. It’s the subject matter that would come as a complete shock.

For the better part of my life, I never wanted children. As a child, I played with dolls, but mainly because my girlfriends did. I never imagined, as they did, that the plastic doll was a real baby and I was a real mother. The thought of dolls that actually cried, or provided wet nappies after feeding with a special bottle, filled me with horror. I couldn’t understand why my friends got so excited about their baby brothers and sisters.

As I grew up, my lack of maternal instinct remained strong, and formed in to a concrete opinion that I didn’t want children. Ever. I was the odd one out amongst my peers, the only one who felt “never” rather than “someday” would be the best time to procreate.

I never had to deal with any sadness at the fact that diabetes might make it difficult, or impossible, for me to be a mum because I didn’t want to be one anyway. It was either that, or that possibility was what made me, albeit unconsciously, shut my mind down to the decision. Either way, I was unconcerned, content to imagine a life shared with just a partner.

In my twenties a string of general health and gynaecological problems led to me being told that the chances of me having children, especially without assistance, were small.

I still wasn’t all that concerned. I really didn’t want to be a mum.

What I wanted, more than anything, was a relationship that would offer me everything that my parents have. They’ve always been the best role models in every way possible, but especially in terms of what a life partnership should be about. And while, by that time, I was a little bit past the little girl dreams of being a princess on my wedding day, my feelings were very much the adult version of that. Settling down with my soul mate was what I wanted. I wanted to find someone to grow old and wrinkly with. Actually, I could live without the wrinkly bit!

A few years passed. And then I met Ian.

It sounds cheesy. Try as I might, I can’t write this in a way that it doesn’t. All the clichés I’d ever cringed at turned out to be true. The one about finding something when you least expect it. The one about how when you meet the right person you just… sort of… know, that they’re right for you. It seemed that I had found exactly what I was looking for.

And all of a sudden, I wanted children. With a passion that surprised me. The first time we discussed it, as a possible part of our future, I cried the kind of tears that come right from the bottom of your heart. Because suddenly I wanted this so much but was afraid to feel that way. Afraid it wouldn’t be possible. I still didn’t “want children”; but I wanted Ian’s children. All in a moment, it clicked for me. Twenty five years without a whisper of maternal instinct, and suddenly it hit me like a truck.

Last year, Ian became my husband. We had an amazing honeymoon. We made the decision to move out of London, and first found, then bought and finally did up, our new home. We both turned thirty last year. And we made the decision.

Much as we love being a family of two, we were ready to try and make a family of three.

So All Those Years of Contraception Were Worthwhile

I never expected falling pregnant to be easy.

In fact, I thought it would be downright tough. I’ve seen enough people struggle to conceive, and heard all to often about women who’ve spent the first half of their adult lives desperately trying not to get pregnant, only to spend the next five or more years doing absolutely everything they can to do exactly that. And I really thought that would apply to me.

It’s not that I’m a pessimist by nature. I had some pretty strong reasons to doubt my fertility.

Apart from anything else, I’ve got more than 25 years of type 1 diabetes under my belt. Whilst diabetes doesn’t, as far as I’m aware, specifically contribute to decreased fertility, it certainly doesn’t make things easier. When I was diagnosed, there were many doctors who specifically advised diabetic women against pregnancy. And I’d always been warned that diabetes could affect my menstrual cycles. That pregnancy, if achieved, would carry additional risks for both me and the baby. It wasn’t something that bothered me all that much though.

Then, in my early twenties my periods, always irregular, stopped altogether. I had an IUD at the time and I, and my doctors, assumed this was the reason. But after I had it removed, they still did not return. In two years, I had two periods. I was not particularly bothered. Relieved more at the absence of pre-menstrrual bad moods and bloating and of dealing with the whole messy business, not to mention the cyclical screwiness of hormonal effects on my blood sugars. Plus, I had more space in my bathroom cabinet without the need for tampons! It took me those two years to actually ask for the reasons to be investigated. I was given a diagnosis of premature ovarian failure and told I wouldn’t be able to have children. The diagnosis was, quickly, proved to be false when my periods re-started of their own accord. I was, however, found to be oestrogen deficient and having anovulatory cycles. When my autoimmune pituitary issue was diagnosed, my gynaecologist was adamant that probably played a role too. I was told it was still unlikely that I would fall pregnant, at least without assistance.

I still wasn’t all that bothered. It certainly crossed my mind that this meant I didn’t actually have a choice about things, so it meant I wasn’t really making a conscious “decision” not to have children. I guess it probably did cross my mind for the first time that there was a tiny possibility that my feelings about motherhood may change in the future. But just as quickly I realised that now they couldn’t. I’d never have to feel judged about “not wanting” children if I couldn’t have them anyway.

I began using hormonal contraceptive patches to boost my hormone levels and regulate my cycles. I felt an awful lot better for it. And the plus side was that I was protected against pregnancy should any of the things I’d been told turn out not to be true. One thing you don’t want as a diabetic is an unplanned pregnancy, as the only way to mitigate the risks that diabetes carries is to ensure it’s under the very tightest control possible before you even conceive. Obviously I strive for tight control all the time, but I’m a human, not a machine. And the targets for pregnancy are even tighter than normal. Without contraception, I think I’d always have been wondering about pregnancy at the back of my mind. With deeply irregular cycles, I’d probably have been peeing on a stick every so often, just to make sure. So contraception was covered, even though I didn’t think it was totally necessary.

And then things changed in my life.

Once the decision was made that we wanted a baby, a lot more things changed. I started taking a pre-natal vitamin and later added high-dose folic acid. (The pre-natal vitamin includes the standard 400 microgram dose, but given that I have two of the factors that increase risk for neural tube defects – diabetes and taking anti-convulsants – I was definitely rocking the 5 milligram dose.) I cut down on caffeine and alcohol. I maximised the fruit and vegetable content of my diet, and began minimising the carbs in pursuit of lower post-prandial blood sugars. I stepped up all my efforts to achieve the tightest blood glucose control possible. I increased blood glucose testing from 8-10 times a day to 12 or more. I was using Continuous Glucose Monitoring… well, continuously. I moved to a once a month schedule at the diabetes centre, and eventually began attending official pre-conception appointments at the pregnancy clinic. I was religiously logging numbers: blood sugars, boluses and carbs. I was stalking the highs, tightening my targets and correcting with vigour.

I wanted to reach a point where we could be given the go ahead to try to conceive. But all the while I was pushing to the back of my head that little niggling worry that I wouldn’t be able to conceive. While I was so focused on blood glucose management, it was easier to suppress the worry that my body wouldn’t work the way it was supposed to.

Eventually I made the decision to discontinue the artificial hormones. We didn’t stop using contraception entirely, but I knew that I needed to see what my body would do without the hormones. Six weeks later, I had my first proper period. And just over four weeks after that, another one. And then a third. I began to let myself hope. Maybe the years of hormones, and the treatment for all my underlying health problems, had somehow kick started my body.

And so obviously, we were desperate to try, and see what happened. In other words, ditch the contraception and have lots of sex!

Then came a disappointing blow. Despite all my changes and efforts, I received an A1c that didn’t shift in the downward direction I wanted. The A1c test is a reflection of how well controlled your blood sugars have been over the last 2-3 months. In a normal, non-diabetic, the level will be between 4 and 6%. The target for people with diabetes is to keep it below 7.5%, preferably lower, to reduce the risk of long term complications. For women who want to become pregnant, the target is below 6.5%, or even below 6%.

The number I received wasn’t terrible. It was 7.1%. But it wasn’t good enough for pregnancy. Not by the standard guidelines. And definitely not by me. I wanted it to be better. When I got the result, my heart sank. I’d really thought the number would be better. I couldn’t look at Ian, sitting next to me, because I knew that I’d cry. We were ready for a baby. But my diabetes wasn’t. I hated that this was what was stopping us. Especially when I’d just begun to hope that my crazy hormones just might be about to co-operate.

I was still afraid that we might not be able to conceive, but even more afraid that I might not be able to achieve the level of control that I needed just to try.

I really doubted my ability to do any more. I felt like I’d been working so hard, and it wasn’t paying off. I was frustrated that years before I’d achieved much lower numbers with much less effort. Fortunately I was supported by a wonderful husband and also a fantastic medical team. They helped me to see that didn’t need to work harder. That actually I needed to loosen up the stress, and that I needed to be more efficient. We made the decision to invest in a new Continuous Glucose Monitoring System to replace the existing system I’d been using for a number of years, but which was proving problematic, and I changed my insulin pump – back to a previous model that I’d preferred. New gadgets can be a great motivating force for me!

We got there in the end. I achieved a result of 5.9% and we were given the go ahead to try.

We discontinued the contraception. Pretty soon it was evident that I had needed it all along. Getting to the point where I was able to try to conceive was downright tough. But after that, the actual conception part turned out to be pretty straightforward.

Everyone’s a Little Bit Pregnant

There is a funny thing about trying to get pregnant. It turns out that, as far as the medical establishment is concerned, all women are a little bit pregnant every single menstrual cycle.

That’s because pregnancy is dated from the first day of your last period, which means that you are classed as pregnant before your ovary even releases the egg that will eventually be fertilised and go on to develop in to your baby. So a woman who has a textbook 28 day cycle, and ovulates on day 14 of that cycle, is already two weeks pregnant when she conceives! Since the dating of pregnancy is based on the myth that all women have 28 days cycles and ovulate on day 14, regardless of when you actually ovulate, your pregnancy will always be dated from two weeks before conception.

It’s an odd system, but the upside it that we get two of the forty weeks of pregnancy as a free bonus. By the time a home pregnancy test will reliably detect pregnancy at 14 days post ovulation, we’re already classed as four weeks pregnant. Just 36 weeks to go. It’s still a long time, but it’s 10% less time. And it means that there are nine four-week (lunar) months from that point until expected delivery. Or just eight real 4.5-week  calendar months. And that is better than suddenly considering pregnancy as TEN four-week months.

The finish line, it turns out, is a little bit closer than we think!

Two Pink Lines

We found out that I was pregnant on a Sunday evening.

I took the test almost to prove Ian wrong, that there was no way I could be pregnant. I wasn’t even totally sure whether I was expecting my period yet or not, although I’d had a sustained increase in my basal body temperature for enough days that it was certainly possible. We spent the weekend at Ian’s parents. I thought they’d suspect when I wasn’t drinking – having just a few small sips of champagne at his dad’s birthday meal. But I didn’t want questions. I didn’t want to feel under pressure, because I probably wasn’t pregnant.

Ian seemed increasingly convinced that I could be. That I was.

We arrived home on Sunday afternoon, and I nipped straight out to Boots to buy a First Response test. I bought a two pack, thinking that it was bound to be negative, but a two pack worked out cheaper per test than a single, and then I’d have another test for another cycle. I debated waiting until the following morning, because the concentration of the pregnancy hormone would be greater in first morning urine and so the chances of an early positive result are increased. But in the end I wanted to prove things one way or another, at least for that moment in time. So I peed on the stick.

Does a watched pregnancy test develop?

I don’t know, but I couldn’t bear to stand in the bathroom anxiously watching my pee creep across the test window, searching for signs of the lines that would seal the result. So I popped the cap on, stuck on the windowsill and Ian and I both went in to the bedroom to wait the requisite three minutes. I’d always imagined that Ian would be with me whenever we got a positive pregnancy result. I didn’t want to test and him not be there, to find out the result at the same time as me. We made the baby together, so I wanted us to find out about it together.

For those three minutes, I was pacing around saying “It’ll be negative. There’s no way it’ll be positive.”

“But it could be” Ian would interject. The shaking his head agree that no, it wasn’t going to be, but at least we’d know.

I watched the numbers on the bedside clock. It was 5.47 when we could go and check.

I raced down the hall, beating Ian back to the bathroom, still chanting that it would be negative.

“There’s only going to be one line…” I seized the little plastic stick from the windowsill

Ian was right behind me saying “Yeah… there’ll just be one line…”

“…. But there’s two….” I interrupted. ” Oh my God… there’s two lines… it’s positive.” I remember thrusting the test at Ian. The huge grin on his face.

The memory is a little hazy from here. I remember Ian grabbing me in a hug. We both jumped up and down a little. We raced downstairs and I bounced around the room.

There were two, strong, pink lines on the test. I was definitely pregnant. Not just a little bit pregnant. But properly pregnant.

Of course, I still didn’t totally believe it. And two more tests – different brands – followed over the next 24 hours. By which time even I had to admit that it was pretty conclusive.

It was really on… there was a baby cooking away in there.

 

 

Loss. Guilt

Whilst getting pregnant proved to be fairly easy in the end, it’s not necessarily all a walk in the park from there.

That Sunday evening wasn’t the first time I’d seen more than one pink line. A second pink line doesn’t always result in a baby nine months later. In fact, it really often doesn’t.

Some statistics suggest that as many as three quarters of fertilised eggs never actually make it. They don’t implant at all. Or they implant, only to be lost within hours or a day. For many women, it may just seem that their period is a little later than usual. For women with irregular periods, they may notice nothing at all. This all occurs before a home pregnancy test even turns positive. Once you’ve got that positive test, there is still a one in five chance of early pregnancy loss – that is a miscarriage occurring before 12 weeks gestation.

It seems that miscarriage rates have increased in recent years – everyone seems to know someone who has been affected by miscarriage. But it’s more likely that more miscarriages are known about now, thanks to very early pregnancy tests that can tell you very soon after implantation that you are pregnant – perhaps even days before you would even notice that your period was late. Previously women would not have been sure that they were pregnant, so could not be sure that bleeding after a delayed period was a miscarriage.

Why a miscarriage happens is usually a mystery. For some women it’s a sign of an underlying problem, or caused directly by another health issue. But in many cases, the cause is totally unknown. “Un-viability” is a phrase that is bandied around. Chromosomal abnormalities that are incompatible with continued fetal development. But even knowing these statistics, about how common miscarriage is, and even knowing that it’s often no one’s fault and that the pregnancy was not to be – couldn’t have developed further – doesn’t make miscarriage any easier to bear.

And for me, I can’t help but jump to the conclusion that diabetes may somehow be involved. The increased risks of a diabetic pregnancy – including miscarriage, still birth and birth defects – are drummed in to every woman with diabetes. It’s easy to direct the anger towards it. But the truth is, if diabetes were the cause, I would still really have only myself to blame, for not keeping the necessary control. My A1c at that time was 6%. I’d rarely seen a number above 9 in the preceding two months. I was micromanaging every aspect of the condition – a condition that attempts to defy micromanagement, and usually succeeds. But still I have a nagging doubt. There was that one night when I was so tired that CGM failed to rouse me. That was also the one night where something went awry and when I finally awoke, my blood sugar was over 20. And then there were all the lows. None of them serious enough to cause me to lose consciousness, but many of them prolonged over hours at a time.

The simple honest truth: I feel guilty.

Unsurprising really. Guilt is one of the emotions that is right up there in the top five of living with diabetes. There are very few other conditions where so much responsibility is put on the person themselves to keep things under control. Where our actions or the lack thereof, are under constant scrutiny not just from medical professionals but also friends, family and the public at large (those people not-so-affectionately known as “The Diabetes Police”). There is a constant suggestion of blame when things don’t go to plan. If we hadn’t eaten that, or drunk that, or if we’d taken more or less insulin, or even exercised differently, then things would have been different. Of course, we know that things aren’t that simple. You can do everything you should, put in all the effort demanded by this relentless condition and then the diabetes fairy comes along and laughs in our faces. Seemingly insignificant things like the weather, moods or whether the month contains the letter ‘R’ all influence our position relative to the tight line we try to maintain. But the continual judgement of others regardless of whether or not it is misplaced, coupled with the high standards we set ourselves and the inherent frustrations of being unable to maintain those standards at all times all leads to plenty of scope for guilt.

I’ve battled against diabetes guilt for much of my adult life. Working through my reactions to every less than ideal blood sugar, and every A1c that falls outside the tiny range that I strive for. Trying to deal with it logically and dispassionately. Identify the problem. Find a way to address it, and if feasible to reduce the chances of a recurrence. Then move on. Accept that I’m human. Accept the limitations of the insulins and technology we currently have. Accept that what other people think is largely irrelevant, and that unsolicited advice is just plain rude.

I’m not always successful. Usually my guilt peaks at the very same time as my most intense feelings of burnout. The  moments when it all just seems too hard to juggle the multiple balls in my life. When my control suffers because I can’t devote the energy it demands. When the numbers on my meter elicit rage, rather than problem-solving. I feel guilty for not being able to cope with this on every single day of the year. I feel guilty for not getting out the results I know that I can, because I’ve achieved them before. Irrational – yes, definitely. At other times I know it’s just the way it goes – it’s that diabetes fairy again – but in the pit of burnout it feels as though everything is my fault.

The flip side of the coin, though, is that sometimes the guilt is not misplaced. Like the times I kept the same infusion set in for a week straight. Or the times as a teenager when I deliberately omitted insulin. The times as a student when I definitely drank more alcohol than I should have. The time I forgot to collect a prescription and had to make five test strips last an entire weekend.

And what about this time?

It’s so hard, even now, to suppress that niggle of doubt that I could have done more. It’s one thing to feel guilt because we fear the consequences of poor control for ourselves – our own eyes, kidneys, nerves and heart – and feel afraid that we’ll only have ourselves to blame if things go wrong. But what about when the consequences of what you’ve done, or not done, influence someone who was completely innocent. What happens when you lose something indescribably precious and the fact that you didn’t do enough to keep the numbers under control might be the reason.

It’s incredibly difficult to move past.

I’m so determined that this time will be different. It serves as motivation to do absolutely all I can, no matter how hard. It also means holding a good deep breath. I’ve been holding it for a while. And I’m still afraid to let it go.

The Nuts and Bolts of Monitoring a Diabetic Pregnancy

A pregnancy with pre-existing diabetes is automatically deemed “high risk”.

There is no point in getting upset over semantics. Despite how it may sound, I’m generally fit and well. On a day to day basis I’m healthy. I’d like to have a “normal” pregnancy, and honestly I do have a good chance of a perfectly “normal” pregnancy with a lovely, healthy baby at the end and no additional complications or surprises.

But there are increased risks, both to mum and baby, when the pregnancy is complicated by pre-existing diabetes. And really all that “high risk” means is that I’m being closely monitored with the aim of preventing potential complications and also so that if any of them should arise, we can do the very best to minimise them.

In early pregnancy, women with diabetes have an increased risk of miscarriage – although increased by how much is debatable, given how common miscarriage unfortunately is. The risk of birth defects is also increased – although by how much depends quite a lot on how close to non-diabetic your blood sugars. Prolonged high blood sugars in the first trimester increase the risk, as this is when all the baby’s organs and systems are forming.

Women with diabetes are also much more at risk of macrosomic – or big – babies. This one is practically a cliché. Again, it is very much affected by blood glucose control. Once the baby has a functioning pancreas of its own, any excess sugar in the mother’s blood stream, which passes to the foetus, will cause more insulin to be produced. Insulin behaves rather like a growth hormone, and this contributes to the baby growing larger. Of course, many women have large babies without being diabetic, and many diabetic women have babies of perfectly normal size, so none of this is a certainty. The main problem for a very big baby is delivery!

Conversely, women with diabetes can be at increased risk of intra-uterine growth restriction, causing a small baby. This may be attributable to early placental breakdown, which may also cause still birth ad is the reason why many women with diabetes are advised to consider early induction of labour.

Scary list, but it goes on. There are also specific risks to the woman herself. In early pregnancy insulin needs can be dramatically reduced and coupled with the goal of tight control this can increase the risk of severe hypoglycaemia. Pregnancy itself may contribute to changes in the warning symptoms of low blood sugars, and frequent blood sugars can dull these warning symptoms further leading to an increased possibility of passing out or seizures. In later pregnancy, pre-existing diabetes is also a risk factor for pre-eclampsia, which unmanaged can itself be life threatening to both mum and baby.

Pregnancy itself may accelerate any long term complications of diabetes, especially diabetic retinopathy. Part of the mechanism for this is related to pregnancy hormones, but it’s also in part down to the irony that a rapid improvement in how tightly blood sugars are controlled can cause a rapid deterioration in retinopathy.

It would be easy to find this all totally and utterly depressing. It is pretty depressing. But it’s also important to remember that these are all just raised risks. There are no certainties and the idea of the “high risk” label is so that everyone can work together to keep how much the risks are raised to the absolute minimum. Ideally to prevent all of these things from happening.

What this means in terms of pregnancy care is appointments. Lots of them. Throughout the first two trimesters, I’m scheduled to be seen in a diabetes and pregnancy clinic at least every two weeks – more often if there are specific problems. These appointments involve a raft of medical professionals – a diabetes consultant, a diabetes specialist nurse and a nutritionist if required as well as an obstetrician specialising in pregnant women and a similarly specialised midwife. In addition, there is close email and telephone contact between visits. There will be additional scans to spy on the baby and check for problems, including a foetal echocardiogram to check on the baby’s heart during the second trimester, and fortnightly growth scans from the late second trimester onwards. This is in addition to the routine scans and midwife care offered to pregnant women without diabetes.

My eyes will also be under closer scrutiny than normal to look out for any changes. In a non-pregnant diabetic with no previous problems, retinal exams would be once a year. Now, my retinas will be photographed once per trimester, in addition to having been examined just a few months before the pregnancy began.

It’s a demanding schedule and in the third trimester, things step up even more. The growth scans continue and the visits become once-twice weekly. But whatever it takes to keep baby and mum healthy – it’s got to be done.

The final part of the equation is everything that goes on in between all those appointments. Managing blood sugars is the biggest part of managing the risks of a diabetic pregnancy, and managing blood sugars tightly can be a full time job. No amount of time spent at the hospital will make a real difference if I’m not able to keep on top of things for all the other hours in the week. Whereas the healthy body has all the tools to continually sense and respond to changes in blood sugar levels, I need to get that information for myself and act on it. What this all means is lots and lots of blood glucose tests, and for me, wearing a continuous glucose monitoring system and an insulin pump, which is the best tool for me to be able to respond to rapidly changing insulin requirements.

No one said a pregnancy with diabetes would be easy. But I’m sure that it will all be completely and utterly worthwhile when hold our child in our arms for the first time.