Tuesday, 21 July 2015

28 weeks ~ appointments and birth plans

So I'm 29 weeks pregnant and starting to think about my birthing plan.  It's a weird situation to be in because in my last pregnancy I didn't feel like I had any choices and so didn't see the point in writing a plan - I just went along with what the doctors wanted.

This time I feel like I have a voice, I feel like I have choices to make and most importantly I feel like I am being given all the information I need to make those decisions.

Over the last 2 weeks I have had quite a few appointments and the amazing thing is they have all been really positive and I really feel like I now have a pretty good idea of what I would like to happen during my labour.

Anaesthetist appointment

The first appointment I had was with the anaesthetist at Epsom hospital - all I can say is she was amazing.  Having looked through my notes she said she didn't blame me that I didn't want another epidural after what happened last time.  She also said that I coped so well with the pain last time she didn't feel I would need one this time anyway.

She also said that hopefully this baby won't get stuck like Riley did as second babies tend to get into the right position easier so hopefully I won't end up needing a forceps delivery.  Also I hope to be able to move around more this time so that will help the baby's position.

So the plan is that if I need to have a c section or forceps delivery this time they will just do a spinal - which is a smaller needle in a different part of my spine.

I also found out that if I had a seizure they wouldn't give me either an epidural or spinal as they are both seizure inducing, if I needed a c section due to seizures they would put me under general anaesthetic anyway.

Community midwife

I finally met my community midwife and she was lovely.  She really seemed to understand that a natural labour would be the best thing for me.  She said that there is now a consultant midwife at Epsom hospital so I am going to go and see her to write my birth plan rather than the reflections midwife at the other hospital who I really didn't find very helpful last time.

When I said I felt like I had failed because I had ended up co-sleeping with Riley in hospital she said no you didn't fail, we failed you... that meant a lot hearing that she understood.

I also had my anti D injection as I'm rhesus negative so that was another thing ticked off the list this week.

Epilepsy specialist at The National Neurology Hospital, London

We saw my epilepsy specialist and she was really pleased with how I am doing and feels that the Keppra is working. I've had no seizures for eight months and even the idea of driving again soon was brought up! I'm not going to get my hopes up and I think even if I am still seizure free in November I won't be rushing to get my licence back.  But who knows when the baby is sleeping better if I am still seizure free it will be amazing to be able to drive myself places in the evenings, I'd have a little bit of freedom back.

We discussed IVs during labour and she said she liked women with epilepsy to have one during labour but could understand why I didn't really want one after last time.  She has left it quite open for us to discuss it further with the epilepsy midwife and Epsom hospital.  She is also supportive of the fact from an epilepsy point of view I should be discharged as soon as possible and if not Rich needs to stay with me.

She also agreed that Clobazam probably wasn't a good option for me during labour as I didn't react well to it last time and my seizures seem better controlled this time anyway.

Epilepsy midwife at Royal Hampshire Hospital, Winchester

This was the most amazing appointment of them all.  She is an amazing woman who makes us feel empowered to make this pregnancy and labour what we want and not what the doctors want.

The main things we discussed were:
1. This issue of an IV - a recent study found a 1-2% chance of having a seizure during labour but failed to look at whether there were any causative factors for these seizures.  So with such a low risk and with my epilepsy well controlled she doesn't feel I need an IV.  I have never been in status and if I do have a seizure during labour I wouldn't need emergency medication unless it lasted longer than 5 minutes as the baby wouldn't be affected by a self resolving seizure.

2. She feels if everything goes well I should be discharged home as soon as possible and if we do need to stay for any reason Rich must be allowed to stay to ensure the baby is safe.

3. Eating and drinking  during labour - last time I wasn't allowed to drink for 12 hours due to them putting the epidural in - this time because I don't want an epidural I should be able to drink during labour.  I just remember being so thirsty last time, if I can avoid that it would be fantastic.

4. Hypnobirthing can trigger seizures... she also says it can make you feel less in control, something I really struggled with last time.  She was really positive about mindfulness though and so I think I am just going to continue to concentrate on mindfulness exercises to help me through labour - I'll talk more about this in another blog as it is something which is really helping me to feel more in control of everything.

Then she started asking me if I had thought about how I wanted the baby to be monitored during labour and also what I want to happen about delivering the placenta after the baby as these are also things I have a choice over. 

This is a strange thing for me to get my head around firstly because the period after delivering Riley was the worst part for me but also because last time I didn't get any of these choices.  So I'm going to go away and have a read up on my options.

It was just so good to be planning my labour as a positive experience where I can use my mindfulness training to deal with whatever happens and be treated like a 'normal' woman.

So I really feel like my birth plan is coming together.  I feel like we have so much support now from my specialists and midwifes in Epsom that hopefully the doctors will back down and realise I've though all this through and I'm not being irresponsible.

It may sound strange but I sort of feel that I need to win this battle not just to give me the best chance of having the birth I want but also to give women with epilepsy everywhere the confidence to stand up to doctors when they over medicalise things so that women are less likely to go through what I went through last time.

The best bit is the epilepsy midwife wants to write our story as a case study which would really help highlight everything which I feel I have had to fight so hard for but which I hope in future won't be such a struggle for women with epilepsy.


Thursday, 2 July 2015

Riley turns three ~ our amazing little girl is growing up.

I am sorry it has been a while since I last wrote a blog – the honest truth is that from a pregnancy point of view not a lot has been going on and life has just got really busy.  Just the way I like it, I have been left in peace by all the health professionals aside from a phone call from a midwife at our local hospital to tell me the doctors didn't write anything in their notes following my appointment at 18 weeks!  I have been doing really well, still completely seizure free which is a miracle!  I can feel the baby moving every day and feel fine in myself aside from having quite a lot of acid reflux and some Braxton Hicks contractions – but that’s just normal pregnancy things and all part of the experience!

The most eventful thing to happen is Riley turned three – I think she had a pretty good birthday!  We went to Hobbledown farm park on her birthday itself and then had a Peter Rabbit party at our house at the weekend.  She also seems to love her presents – she was adamant she wanted a camera and a scooter for her birthday and is definitely making the most of both.  We've had some very interesting photos and she hasn't been in her buggy since her birthday and is scooting everywhere which is fantastic (although maybe not for the wear on her shoes which she uses as a break!).

I'm almost in my third trimester now and the next few weeks hold a lot of appointments so I will be busy blogging about them as and when they happen.  I guess now is the time for me to start writing my birth plan and making sure things are in place to try to make this labour less traumatic.  So in the next few weeks I am seeing the anaesthetist, my epilepsy consultant, the epilepsy midwife in Winchester and the community midwife.  I will also need to have my whooping cough vaccine and Anti D injections – so lots going on.  But I am hoping that by the time I am 30 weeks I will have made a plan with my specialists, and I can then make appointments to see the doctors and reflections midwife at the local hospital to lay down exactly what we want to happen during labour.

But for now I will leave you with some photos from Riley’s birthday.  I can’t believe how grown up she is getting.  She is so excited about her brother or sister coming and hugs and kisses my bump and sits and talks to it, it is amazing to watch and brings me close to tears.  Riley Roo you are amazing, we are very lucky to have such a wonderful little girl.  Happy 3rd Birthday.

Wednesday, 27 May 2015

The pressure of being seizure free...

I have been totally seizure free for 6 months now which is the longest I have ever been seizure free for since I was diagnosed 10 years ago.  Now don't get me wrong I am really happy but part of me is terrified too...

The seed for this blog was planted by a friend of mine who has really inspired me to talk out about something which I find difficult to put into words and which I sometimes feel guilty for but here goes – I just hope this makes sense and that I don’t upset anyone.  

For many years I have felt in a difficult place, my seizures don’t happen, daily, weekly or even monthly but my seizures have never fully gone away, in fact at one stage I went over two years without a major seizure and then had one for no apparent reason.  I often find myself feeling bad that sometimes I get down about my epilepsy because so many people have it so much worse.

But talking to my friend made me realise something…  now don’t get me wrong I would never want to live with more regular seizures but in having seizures so irregularly sometimes I feel I can’t be completely honest about how I am feeling around people whose seizures are so much worse.  

I often feel bad posting on epilepsy forums about my problems because they often involve issues people whose epilepsy is so severe can only dream of facing.  When your seizures are under control you have to get on with your life – live it to the full or you are wasting that time but the epilepsy is never gone, it is always there in the background, always posing a risk. 

This weekend I mentioned this to my husband and he totally understood what I was saying.  He said it’s like if you have seizures all the time someone is constantly hitting you with a bat which hurts and stops you being able to get on with things.  But when your epilepsy is controlled it’s like you are being followed around by someone holding a bat who might hit you at any moment for no good reason – you can’t forget it’s there and you always have that worry with you.

He also told me about an experiment carried out in the 1960s where monkeys received electric foot shocks that were signalled by a preceding tone.  Monkeys were in pairs, with one in each pair able to press a lever to avoid the shocks.   The other monkey in the pair could not press the lever and so received all the foot shocks that were delivered.

The monkeys who had control over the lever quickly began to show signs of stress such as gastric ulcers and some even died.  The monkeys who received shocks but could not try to avoid them, remained healthy although I’m thinking probably weren't particularly happy!

They concluded that the shocks themselves were not severely stressful as the monkeys who had no control over the shocks showed little sign of stress; the critical factor was the stress associated with trying to avoid the shocks.  Having control was the stressful element.

In a way if we get our epilepsy under control with drugs and by making sure we look after ourselves it’s a bit like being the monkey pressing the lever to stop the shocks – we can avoid the horrible seizures but we have to make sure we take our medication every day, get enough sleep, eat healthily, don’t drink alcohol.  

The more we do to try and stop the seizures the more pressure we put on ourselves not to mess up.  Then because we don’t have seizures any more we take on more responsibility, we drive, have children, take a job which relies on us being seizure free… and then it’s even more important we don’t slip up – miss our medication, have a bad night’s sleep, get stressed over things, because the consequences of having even just a single seizure are so much greater now…

It’s something I have always felt bad talking about because I feel I should just feel lucky to have such control over my seizures that I can do so much with my life, but suddenly I realised I'm not alone in feeling like this and by not speaking out about it I am bottling up stress and anxiety which isn't healthy.  

Maybe just maybe there are other people out there who feel the same and by writing this blog I might reach out to you and make you know it’s OK to feel anxious and down sometimes even when your seizures are well controlled – because we still have to live with the unpredictability of epilepsy just in a different way.

Tuesday, 19 May 2015

Half way there ~ the ups and downs of epilepsy and pregnancy!

So we had our 20 week scan yesterday and baby is doing really well.  It was actually done by a consultant who while extremely quick seemed very competent so whilst we didn’t get much of a chance to really see baby, I feel like the baby has been checked by the best person possible.

The other good thing about this is that it now means we don’t need to see any medical professionals for a while which I am really happy about.  I can now get on with enjoying my pregnancy which is going really well at the moment and the epilepsy midwife I have been in contact with is making me feel really positive about the whole thing.

I have also been convulsive seizure free for 16 months and completely seizure free for 6 months – this is something I really didn’t think possible and while I am very aware that my epilepsy is a type which is difficult to fully control and so may rear its ugly head any minute I just want to enjoy it while it lasts.

But unfortunately we are really struggling to keep my pregnancy non-medicalised and I’m finding it very frustrating.  We had a hospital appointment a couple of weeks ago with the consultant team at the hospital I am giving birth at.  I was meant to see the consultant but because they were running so late I ended up seeing a registrar who knew absolutely nothing about epilepsy.

We clashed over a number of issues... 

Firstly – scans – they wanted to do an extra scan at 34weeks, the epilepsy midwife has told me a detailed scan at 20 weeks by a consultant is enough and I want to stick with that.  They weren’t happy and told me I wasn’t thinking about the baby and then brought up the fact I had refused the Downs Syndrome Test and told me the babies neck was normal thickness which was a good sign –but we didn’t want to know and now you have told us – what if it hadn’t have been normal would they have told us then???

Secondly – an IV – they want me to have an IV in and I don’t want one, their answer to that was – keep seeing the councillor – like she’ll be able to convince me to do what they want!  I don’t want to have it put in so they can put lots of other things through it to cover every possible eventuality.  If there is a medical need during labour then they can put one in then.

Thirdly – discharge – so apparently I’m not going to meet their early discharge criteria even if I have a normal pregnancy and straight forward labour so they will want me to stay in – when I asked why they replied because you are at a high risk of having a seizure after – my argument was that I don’t need to be in hospital if I have a seizure as they have always self-resolved and I will have much more support at home from Rich, family and friends and will be much less stressed at home.  I can self-discharge so although I don’t want to do that I guess it may be the only way to ensure I am in the best place for me and baby.

Fourthly – seeing the consultant team again – I didn’t want to see them again unless anything changes, they want to see me regularly, in the end we decided I would go back at 34 weeks after I had seen my specialist in London.  They told me 4 times ‘you MUST tell us if anything changes with your epilepsy’ making me feel like I was being irresponsible but all I am doing is following the advice from the only epilepsy midwife in the country and I am planning to travel down to Winchester to see her again before this appointment as well just so I feel confident in my decisions. 

But on a positive note I could feel the stress that in the past I know has triggered my focal seizures and I didn't have one - so maybe the Keppra really is helping.

To be honest if I do have a seizure they won’t be the first people I call because they won’t be much help, apparently they can’t even take my Keppra levels so I’ll have to go to London for them anyway, I’ll be calling my team in London first and the epilepsy midwife second then I’ll let the obstetric consultants know.
I hate that they are making me feel like I am being irresponsible by not wanting intervention, especially when I am doing what my epilepsy midwife and specialist have suggested.  I am happy to be monitored like any other woman and if they have any concerns at any point I am happy to increase the amount of monitoring and intervention.  But at the moment my epilepsy is the best controlled it has ever been and my pregnancy is going well – why can’t I just enjoy that and feel blessed to be in this position rather than thinking about all the horrible things that could go wrong?

Wednesday, 29 April 2015

Mindful birthing

Having had such a traumatic experience of labour and being a new mum last time I wanted to find an alternative way to cope this time.  I have been interested in mindfulness and its health benefits for a while now and dabbled a bit in it but never seriously looked into it.  Then last week I was lying in bed worrying about what was going to happen in labour this time when suddenly I realised – perhaps now was the time to take a serious look at mindfulness and I am so glad I did.

I am only on the sixth chapter but already I can relate so much to it.  The idea of going into every situation with a “beginners mind” is particularly helpful, the idea that just because it happened a certain way last time doesn't mean it will happen that way again so concentrate on what is happening right now, experience each moment as it happens, without judgement. 

It may sound a bit silly but because I had to have a really heavy epidural for them to do a forceps delivery last time; it meant I didn't actually feel giving birth and that is just one thing I really feel I missed.  I felt so disconnected from the whole experience that I just didn't really experience any of my labour.  I want that to be different this time.  It may not go to plan but I want to be present in the moment this time round, I think this quote sums it up best:

“Mindfulness doesn't give you the birth experience you want, but it gives you a way to fall in love with the birth experience you get.”

So even though I may have to have an epidural or an IV I want to be more present in the moment and more aware of what is going on in each moment so that I feel in control.

I would definitely recommend Mindful Birthing to any expectant mum and I will keep you updated on how I use it throughout my pregnancy, labour and beyond.

Thursday, 23 April 2015

Potty training is... hard work!

I have been told by so many people - it only took us 3 days and he just got it and it will be easy when they are ready... well I don't believe that for a minute!

We have had our second attempt at potty training over the last couple of weeks and yes it's definitely going better than last time but it is most definitely not easy and any parent who says otherwise is either very very lucky or lying!

It hasn't come easily to Riley, I can tell when she needs the potty so there have been a number of days where we haven't had any accidents but she doesn't consistently tell us when she needs it, so if she is with someone else it doesn't always go so well or if I take my eye off the ball for a while.

There are a few things that all parents should be told about potty training...

1. Wait until your child can understand what's happening and you can explain what they are meant to do.  It is also easier if they can definitely understand two phase instructions.

2. Don't do potty training in the winter - use the weather to your advantage - warm days mean less clothes to get wet and the chance to get washing done and dried quicker than your child manages to get it wet again.

3. If your child hates being in the house like Riley does spending a full week in the house while you do 'Potty training' isn't going to be a great incentive for it to actually work.  Two days in and Riley started to connect wearing big girl pants with being imprisoned in the house!  This is where summer comes in again, my advice is go to the park, take a picnic, lay out the picnic blanket and potty and spend the day there.  They no longer feel imprisoned and accidents don't matter.

4. Bribery is ok!  We are now at the point where we have told Riley if she tells us she needs the potty and does a wee or poo on the potty she gets some chocolate (thus needing to understand a two level command).  Everyone says use stickers but you know what sometimes stickers just aren't incentive enough!

5. Pull ups are just the nappy companies way of getting those last few pennies out of parents - they can be really confusing to a child as they feel like nappies so they definitely gave Riley mixed messages, she just didn't get it.  Now there are times when accidents just aren't an option like when Riley rides my friends pony but we found 'Bambino Mio training pants', they are cotton with a waterproof layer in the middle so the child thinks they are still wearing pants but you have a back up 'just in case'  and they are washable so reusable.

6. Don't worry if it doesn't work out first time, if it all becomes too much for your child or you then just go back to nappies and try again in a few weeks or months.

But my biggest message to you is potty training is hard for your child and hard for you.  It's the first time you have to take a huge developmental step with absolutely no advice and as with many parenting topics there is a lot of pressure to succeed and make it look easy, but lets be honest it's not.  But just remember you don't see many teenagers still in nappies so it does happen it just takes time and practice and lots of praise and don't let it take over your life - still remember to have fun with your child.

I thought I'd leave you with this picture of Riley eating roasted marshmallows off a stick - what a great way to celebrate after a week of potty training pressure :)

Wednesday, 8 April 2015

The difference between adequate care and exceptional care

So yesterday we saw the reflections midwife at our local hospital and I have to say I left pretty disappointed.  I think the problem is having seen Kim the epilepsy midwife we had just set our expectations too high.

So I guess I need to start by reflecting on what went wrong last time and that can be broken down into four key parts:
  1.  I ended up going into hospital at 9cm dilated – my waters hadn’t broken so there was still the opportunity to put an epidural and after over an hour of trying they finally got it in. I then didn’t deliver for another 12 hours because the epidural mixed with taking clobazam slowed everything down.  When I finally did deliver Riley was dragged out with forceps because we had both become distressed.
  2. Rich was forgotten just as things were getting really stressful – he got told to wait in a side room while I was taken off to theatre – he wasn’t told anything.   He didn’t know what was happening to me, he thought I had died.
  3. After delivering Riley they forgot to administer pain relief and I was in huge amounts of pain and they then did internal examinations on me.  Of the whole labour for me this was the most traumatic part, I had given birth, it had taken over 24 hours but I didn’t get to hold or even see Riley for what seemed to me to be hours, instead I was in immense pain and having people poke and prod me.
  4.  I had to stay in hospital because I was on IV antibiotics and during that time at night when Rich had to leave Riley was placed in the cot with me to feed for hours on end because she wouldn’t stop crying.  The neurology team had dropped my medication levels straight down from 650mg to 450mg overnight (I have since found out I should have been weaned off them) and I hadn’t slept for 3 days – the risk of me having a seizure was high and I was alone in bed with a newborn baby…
So the first thing the reflections midwife did was say she wanted to talk to me on my own – looking back I should have refused from the beginning but she said that was how things worked there and I didn’t want to set off on the wrong foot.

We talked through what happened last time and I kept saying, it was hard for Rich too, highlighting that he had been left not knowing what was going on (similar to what was happening again right now!) and she kept saying she’d talk to him after we’d run through everything.  I also kept saying that I couldn’t really remember the details because of the clobazam making everything a bit muddled up and I definitely couldn’t remember time scales and it would probably be best to check with Rich about the details. 

Towards the end I was close to tears, when I mentioned how hard the first few months were and whereas with Kim it felt OK to cry – this time I felt like I just needed to pull myself together and it was at that point I knew this woman was a means to getting things down in writing so it could be different this time, I wasn’t going to get anything deeper out of it.

When I was finally able to go and get Rich he was understandably upset and there wasn’t really much more to say.  The thing is it’s not that she did anything wrong – the whole way through she agreed that everything that happened shouldn’t have happened and things needed to be different this time around and we agreed we’d write a clear care plan which at the end of the day from a practical point of view is all I needed it’s just we had hoped for a little more.

As my blogs title says I guess it’s just the difference between acceptable healthcare and exceptional healthcare.  In London they’d always included Rich in my care – always looked at the whole picture and Kim well she was beyond amazing – talking to us both, giving us so much time, empowering us together. 

We are lucky to have my consultant and Kim involved in my care and at the end of the day making the biggest decisions – and that’s what I need to hang onto.  If it wasn’t for the appointment we had with Kim I think I would be feeling a lot more worried but as it is I know what I want and I just need to make sure that’s communicated to the local hospital.