Monday 21 May 2012

38 weeks ~ almost there

The day after I had a baby shower, it was a bit late to cancel it, and there was no reason to really, I know Grandad wouldn’t want me to mope about and it was a good way to take my mind off of things.  So many people came and brought us so many wonderful gifts, it was a lovely evening, I feel so lucky to have so many people who care about me.

I had my second anti-natal class which was taken by a physio, it was talking about anti-natal and post-natal exercises as well as giving advice for any aches and pains people were experiencing.  I was still doing pretty well but was good to get some advice in case things did start to ache.

This week was my final appointment at Epsom Hospital.  It was just to put in place the final plan based on what my London specialist had suggested.  I almost had the doctor who saw me last time and who was really understanding but they changed her to another patient, so I ended up with the doctor I wasn’t so keen on after some of her rather patronising comments in the past, this time she said something along the lines of, you must really hate having epilepsy… no I love it, what a silly comment!  She also wanted me to wait til I was in hospital to get hold of the Clobazam, I pointed out that it could be 2am on the bank holiday weekend, would they really be able to get hold of it straight away as it wouldn’t be much good after being in labour for hours.  Eventually she reluctantly agreed but said “make sure you don’t take it before you’re in labour” made me feel pretty angry, she couldn’t even trust me with Clobazam. 

It may sound arrogant, but I think I am an expert patient, I have had to learn as much as I can about epilepsy as in the past I have had to prove what a doctor is saying is wrong, both in my own care and also the care of young people with epilepsy who I used to work with in my last job.  I still remember having to take a child to hospital because we couldn’t give him anymore emergency medication and having to stop a doctor almost overdose him on more of the same medication.  It is times like that when you do doubt yourself but you have to have the confidence to stand your ground.  After that I learnt knowledge is power, I listen to what doctors say, take their advice, work with them, I am not afraid to ask questions and research anything I am concerned about.  I also don’t just go looking around Google as I have been accused of doing by doctors in the past and I definitely agree the internet does have a lot of incorrect information on it, you have to be careful where you look. I only look on charity websites, drug company websites or research which I have learnt to use correctly as part of my degree.  Being empowered in your care, it’s what the NHS is promoting so don’t be afraid of it, some doctors don’t like it but it is your right to have control over your care, to listen to doctors, question them, work with them and find out where you can read more and take control of your condition, it builds your confidence.

But getting back to my appointment, I can’t just criticise the doctor as she made a clear plan based on what my specialist’s, anaesthetist’s and midwife’s advice.  She also agreed with me that if I was happier staying at home in early labour it was the best place for me, but not to let the pain get too much as it could trigger a seizure which I completely agreed with.  I thought the issue of how long I stayed after was best to face after the event, there were so many things that could impact on it even without my epilepsy, thought it was best to wait and see, and I was definitely right.

I also had to make an appointment to have a sweep done at 41weeks to help the baby along!  Somehow it seemed very strange to book an appointment in case things didn’t happen, but I can see the point as usually first babies are late.
The biggest thing on my mind this week and next was my Grandad’s funeral, I think the time between someone dying and the funeral is a strange period, you don’t really grieve, planning it takes your mind off the actual grieving process.  We are a small close family and so we worked closely together to make it really personal, there was so much to do.  We had a brilliant registrar and together put together a lovely service, so many people had so much to say about him, he was truly loved by so many people.  Nikki and me put together the order of service and made little packets of seeds to give to everyone to remember him.  My uncle, mum and me found lots of photos to put into a slide show to have on during the service.  There was just so much to do and kept me busy for the 2 weeks leading up to my due date.  All the time I was thinking, baby please don’t come before the funeral, most people at that point just wanted the baby to arrive, I desperately wanted it to be late.  I remembered the midwife saying often if you’re stressed the baby doesn’t come, I was hanging on that fact and it would turn out she was probably right.

We had our final anti-natal class where we talked about looking after a baby, mainly about feeding.  We had to do an exercise where we got into groups and discussed the pros and cons of breast feeding, we happened to be in a group with a couple of people who were completely set on breast feeding, they just couldn’t see any cons.  Rich and me played devil’s advocate, because while I am completely pro breast feeding and was desperate to breast feed I am well aware there are lots of issues which could mean it’s not possible for some people and I think it’s wrong to make people feel like they’ve failed because they have to bottle feed their baby, you never know it might be you.

The weather up until this week had been pretty grey and cool. You may wonder why that matters. When the sun comes out and temperature sores it makes being pregnant a whole lot harder!  Up until this last week or so I had been fine, and not feeling too big… but the hot weather suddenly made me feel very pregnant, I was walking up Sutton high street and kept having to stop because I was out of breath.  My feet were also very swollen, my socks and trainers left big indents in my feet and soon I resorted to flip flops but where the strap went I had huge indents!  It was very uncomfortable, I had also noticed my hands were a little swollen, I couldn’t get my rings off which was a little worrying!  If you have general swelling all over then it could be pre-eclampsia so it’s important to go to your doctor but mine was just my feet and hands so was just one of those pregnancy things. I was by that point pretty big!  Most people would be willing the baby to come at this point, but still I was willing it to hang on until after the funeral.

37 weeks ~ final plans

I had been quite worried about giving birth before my London epilepsy appointment as were the doctors at Epsom I think, but luckily baby had held on so Rich and me headed up to London.  We met Emma up there, it was great she came, was good to have her ask questions from a midwife point of view.  As always my specialist was brilliant and a clear plan was made:

  • An IV should be put in as soon as I get to hospital
  • Everyone involved should be aware of my epilepsy
  • Diazepam or Lorazepam should be drawn up and in the room and the hospital seizure protocol should be followed
  • To take 10mg Clobazam 12 hourly from when I arrive in hospital
  • Can have all forms of pain relief including TENS and Pethidine
  • To have epidural early to manage pain and in case of emergency caesarean being needed
  • Low threshold for caesarean
  • Reduce Lamotrigine dose to 450mg straight after birth
She was really good at coming up with a plan but also respecting the decisions of the doctors at Epsom hospital too.  I asked about whether I had to go into hospital as soon as I went into labour as didn’t want to be stuck on a ward on my own without Rich and also whether I had to stay in longer than any other person.  She said that at the end of the day it has to be what Epsom doctors decide but that she doesn’t feel I need to be in hospital any more than anyone else.  I also briefly brought up the possibility of changing my medication to Keppra in the future as I felt my dose was very high and since being pregnant and with lower levels I have felt less tired and with the added risk of birth abnormalities in higher doses I was seriously considering a change in medication.  We agreed to consider this again when we are in a routine with the baby.

After the appointment we went for lunch with Emma to discuss everything.  Emma is amazing, so organised, she said she would find my notes next time she’s in and make sure the hospital epilepsy protocol and a plan for my care was in the front of the notes.  It made me feel so confident knowing my notes were in order and communication was occurring between both hospital teams.  We also discussed Emma’s role, having known her since we were 2 we decided that the midwife would do internal examinations but Emma would do the rest of my care and deliver the baby.

I haven’t really spoken about how I was feeling about everything, I had been trying not to think too much about the labour until the London appointment, although my first anti-natal class had worried me a little.  After this London appointment I was feeling a bit more confident as I felt I had a plan, but at the same time it was becoming very real and the fear of what could go wrong was there and then also how daunting it is to have to be in a very vulnerable and awkward situation.  Everyone says when you’re in the situation you lose all sense of embarrassment but I couldn’t believe that… but looking back now, they were right!

I also had my anaesthetic appointment, they examined my spine and decided it appeared they could get an epidural in.  We decided that I would have an epidural early on, both to manage my pain which could trigger a seizure and also to avoid the risk of me having to have a general anaesthetic if I needed an emergency caesarean if, for example, I had a seizure.  We also discussed Pethidine, I had decided I didn’t want it anyway as both my Mum and a few other people had said it didn’t help the pain just makes you feel you’ve lost control, the anaesthetist said hospital policy was that they don’t usually give it to people with epilepsy anyway.

Saturday 19 May 2012

My Wonderful Grandad

On the 18th May 2012 my whole world was to change, even before the baby came along.  

My Grandad died, he died at home, having been out on his tractor the day before, it was how he would have wanted it to be.  I was there when the paramedics made the decision to let him go, Mum, Paul (my uncle) and me were there, I couldn’t believe it, it seemed so unreal that he was gone.  He had picked me up 3 days before, and had said see you Thursday… but he had a cold and didn’t want to give it to me so I never saw him Thursday and I had the cold anyway. On the Friday he died of a huge chest infection.

He was such a huge part of my life, the memories I have of him are countless, he did so much for me, getting me places when I couldn’t drive and our chats.  I remember when we moved house I had been so sad I wouldn’t need so many lifts and would miss our chats and Grandad told me he’d miss it too, but in the end I think I saw more of him after we moved as I would be up the yard where he lived more and he would drive me to more places other than just to and from work.  I still have tears in my eyes even now 3 months on when I write this, he was so special to me, I still feel a little bit lost without him.  But I have so many wonderful memories of him and I know he would want me to be happy.  He died having been active up until the day he died, that’s how it should be, too busy living to think about dying. But I struggled hugely to come to terms with it all.  The next couple of weeks I don’t think I was thinking very much about the baby, I sometimes feel bad for that but I don’t think you can help how you feel when something so life changing occurs.

This is one of my favourite pictures of Grandad, taken during our Wales holiday I think it shows perfectly why he never finished the memoires he start a couple of years before when he was very ill, he had got his health back and was to busy living to worry about dying. I hope I live like that to the end…

Monday 14 May 2012

36 weeks ~ finishing work

This week I had a focal seizure, tried not to think about it too much, had a lot of other things on my mind.  I had an appointment with the midwife who had no concerns and said I was looking really well and I was feeling really well too.  Although I was quite big and waddling a bit but I didn’t really feel I had anything to moan about.  I finished work for maternity leave this week too, although I felt a bit bad because I didn’t feel I couldn’t work, I think people were a little relieved I was going, I think they thought I might give birth at work!  I was told I didn’t use my pregnancy to moan or get out of things which made me feel good, never want to make a fuss.  I feel so lucky to work in such a lovely place with such supportive colleagues and inspiring young people. I was given lots of baby bits, a voucher and a yummy cake from my work colleagues. The kids gave them to me and said good-bye, some of the parents gave me some little gifts too, feel so honoured.  

I also saw the health visitor, you don’t usually see them until after the birth but one of the first midwives I had seen had picked up on that I was quite anxious about looking after a baby with my epilepsy and so had asked the health visitor to come and see me.  It was mainly lots of questions but did give me a chance to voice my worries, but I was feeling a bit more confident about it all as had had a chance to plan things a bit more which was good.  Was also a chance to get some information and registered with the Sure Start Centre.

I went to my friend Emily’s mother and baby group, was a really good opportunity to meet new Mum’s and hear other Mum’s stories and gain some advice.  It was also my first anti-natal class, luckily Rich got the time off work.  It is quite daunting walking into a room full of other Mum’s to be, no-one really said anything!  The session was really good, I think it gave a good balance between a “normal” labour and what could go wrong.  I think it’s good to have an idea of what may happen so you can prepare a bit for if it doesn’t go quite to plan.  They spoke about choices, about writing a birth plan… as the session went on I started to realise that I didn’t really have many choices: home births, water births and even pain relief to some extent, my epilepsy took them all away, to begin with I was a bit upset but then the more I thought about it the more I was quite glad, I wanted everything to be covered and most people’s birth plans go out the window when the time comes!