Monday, 30 November 2015

A birthday blog! A year seizure free!

Today I am 31, nothing special just another year older...  but today also marks 1 year completely seizure free. I still can't get my head around it as it was only 2 years ago that I came to terms with the fact my focal seizures may never be controlled. I can’t even remember the exact date of my last seizure just that it was in November last year.

So today marks the day I could technically drive again, not that I will because I still don't feel confident that it's controlled. Part of me thinks maybe it's because I was pregnant. Plus even though Benji sleeps better than Riley I still don't feel it's enough sleep and so don't feel safe to drive just yet.

In a few months when Benji is in his own room I will consider driving again but it's scary - I haven't driven in 6 years since my epilepsy was properly diagnosed as focal epilepsy. To just be handed your licence back brings mixed emotions - joy of course that I can have a bit more freedom but also fear of being able to drive and also losing that freedom again.

A lot to get my head round! But the main thing is I am now a year seizure free, the keppra looks like it's working, it's my birthday and the most amazing thing happened this morning. Riley woke up and said 'Happy Birthday Mummy' - she just remembered :) one happy mummy - the best present ever!

Thursday, 15 October 2015

Our first few weeks ~ settling in

Sorry I haven't posted for a while, it's been a crazy few weeks of adjustment to having two little people to care for. Can't believe he's 6 weeks old tomorrow! Here's a little bit about our first few weeks as a family of four.

Baby Blues

So last time I really struggled with low mood and looking back it was probably either post natal depression or post traumatic stress.

We had an excellent midwife visit the first day, she seemed to know more about epilepsy than anyone else I had spoken to at Epsom. She asked about my keppra dose and whether it had dropped and said it could rise a little now and because keppra could effect mood it could make the baby blues worse. It was something I hadn't even considered but just acknowledging it made me feel less worried.

I've had some teary moments and some down times especially when I am tired and feeding hurts. It's not easy bringing up two kids. I feel like caring for a baby this time round is easier but added to the mix is making sure Riley still gets the time and attention she deserves.

I will write a separate post about this soon as it's something I feel needs to be spoken more about.


So this time round feeding has been a real challenge. Luckily we have some great breastfeeding clinics near us who have helped. Initially he just wouldn't latch on at all and I was so worried I had no way to feed him. But the midwife showed me how to hand express and feed him out of a little cup - he was able to lap it up like a cat.

The first couple of weeks he slept so much, completely different to Riley! I was so worried it was the keppra. I emailed the epilepsy midwife she suggested taking my meds just after feeding him so that hopefully when the levels peak (an hour or so after) he won't need a feed. This seemed to help. She also said they could take levels in my breastmilk but as by 3 weeks he seemed a bit more awake, was waking for feeds and was finally back to his birth weight (having lost nearly 11%) I decided we probably didn't need to.

Now I am struggling with sore chapped nipples. It hurts so much it makes me cry sometimes. The breastfeeding councilor helped adjust how I put him on so I am hoping that will help with the soreness. She also said breastmilk is the best thing to help them heel. So we will see if it improves.

All I can say is it is hard and every baby is different, just because you breastfed last time doesn't mean it'll be easier second time! But I hope the benefits make it all worth while.


Well don't want to say too much as don't want to jinx it but he's a pretty good sleeper. He usually goes between 2-3 hours between feeds and sleeps in his moses basket. So I'm getting 5-6 hours a night which isn't bad. I'm still tired as it's broken and let's face it I could do with more especially as my meds make me tired but it will come and I can't complain as could be a lot worse.


Incredibly I still haven't had a seizure, not a focal or a tonic clonic, so that makes it 1 year pretty much. It's the longest I have ever been without a seizure and can't quite believe it. I'm not about to go out and get my driving license as I need more time to feel confident. It's a strange thing being seizure free after living with something for 10 year, a third of my life. It's hard to explain, part of me is over the moon and the other part is scared to accept it in case it gets taken away like it has so many times before.


And so it started happening at about 3 weeks - proper big cheesy grins. Now he'll smile right at you and it just makes it all worth if. All the tough bits are made up for by that one cheesy grin!

I'll leave you with some pictures of our first few weeks (including some cheesy grins!).

Tuesday, 13 October 2015

Our time in hospital ~ waiting, waiting, waiting

So the plan was as quick a discharge as possible but unfortunately things didn't go quite to plan and we ended up staying 3 days.

Luckily due to what happened with Riley we were given a private room and Rich stayed the whole time which made everything much easier.

Benji didn't do a poo for over 48hours which meant we couldn't go home. It also meant the doctors and us were pretty worried something might be wrong with him so I have never been so happy to see  a pooey nappy as I was on Sunday night!

He was also quite sleepy and not feeding very well the first day so I had to express my colostrum and give it in a syringe. It was quite an eye opener, I can't believe how 1ml of liquid can fill a baby up!

Being in the hospital was so hard and the main reason was Riley was so upset we weren't coming home. She came in every day but left in the evening in floods of tears. She loves her brother so so much, it is amazing to watch. She was just such a star and so grown up, I am so so proud of her.

I was feeling pretty well especially compared to last time. I was a lot less sore and able to be up and about. It was the busiest the maternity unit has ever been so we were mostly left to our own devises. In fact my epilepsy medication wasn't even written up until the final night, I didn't even have a hospital bracelet and I don't think many people were even aware I had epilepsy which worked perfectly for me as meant no one tried to intervene with anything!

But going home Monday afternoon was a relief and a chance to get into a routine and start life as a little family of four!

Benjamin Dylan arrived ~ 2nd October 2015

Yeap he's here and we're doing well. As for the birth it was amazing and I couldn't have hoped for better. So here it is - our birth experience take two!

It was 4pm on 2nd that I first noticed contractions but it's possible I'd been having them a while longer as we'd been busy with friends all day. As it was Friday evening I decided to call Rich and mum and get them there just in case and it's a good job I did! I rang delivery Suite as I was a bit worried my waters were leaking but they said unless my pad was soaked they probably weren't. Turns out when they examined me later they had already gone so not sure when that happened!

By 6pm I was pretty sure it was definitely happening and so put my TENS machine on and we had something to eat. Then it was Riley's bedtime! Rich went through the bedtime routine with her while meanwhile my contractions were getting closer and stronger. I used my mindfulness and positioning and felt I was coping ok. When my contractions were 2 minutes apart but only lasting 45 seconds I rang the hospital again. They said take a bath and have some paracetamol. Now taking paracetamol at this point in labour seems to me like offering someone who has just been shot some paracetamol - not really going to do a lot.

At about 8.15 we decided we needed to go, my contractions were lasting a minute and coming every 1-2minutes. We arrived at Epsom at 8.35pm. I made it up to the ward and met the midwife on her way up to the ward. They were really busy but when I got in the delivery room I suddenly needed to push. It's weird as your body just takes over and tells you what to do.

The midwife assistant had to run up to the ward to find the midwife. She came down and examined me and I was 10cms and ready to push. She set up the gas and air and because there was no time to get mats out I decided to push on the bed, possibly the only thing I woukd have done differently.

It was an amazing experience to feel everything - I'm not going to say a nice experience but amazing none the less. And at 9.15pm Benjamin Dylan arrived weighing 9lbs exactly.

The midwife delivered him, placed him straight on me, we found out it was a boy and I was so in the moment it was amazing. Then she left us to help deliver another baby. Tears of joy roled down my face as I was able to hold my baby, give him his first feed after having the birth experience I'd worked so hard for.

She eventually came back and stiched me up as I had a 2nd degree tear. Then I had a cup of tea and a shower and was able to walk up to the ward with Benji and Rich.

It was an incredible experience and made me realise just how close I was with Riley to being able to deliver her naturally when they medicalised the whole thing. But I guess that's the thing, every birth experience is different. I feel blessed to have been given a second and much more positive one.

Friday, 18 September 2015

Mindfulness ~ my lifeline over the last six months

Mindfulness has received mixed press recently.  While lots of people praise its benefits it is also being labelled the latest craze and many companies are pushing to make money out of it.  It’s sad really when all the scientific research is pointing towards it being an effective way for us to treat conditions like anxiety and depression which up until now it has been all too easy just for doctors to prescribe pills to ‘solve’ these complex problems.  

Mindfulness takes work and dedication, at the end of the day it is changing the way we look at the world and  acknowledge our own thoughts.  But I have to say having spent the last six months using it to overcome my pregnancy anxiety, it really does work and I will be taking what I have learnt through mindful birthing forward into the rest of my life.

Foundations of Mindfulness

Beginner’s Mind – don’t let fear from past experiences take over new experiences
Non-judging – things don’t have to be good or bad they can just be
Patience – learning not to let things get to you by coming back to the breath
Non-striving – there is nothing to achieve in mindfulness, it’s all about learning to be more present
Self-reliance – learning to listen to ourselves
Acknowledgement – accepting things just are without trying to change them
Letting be – learning to accept situations as they are without trying to run away from them
Kindness – towards ourselves and towards others

The first thing to learn is how to use the breath as a tool to bring you back to the present moment.  Breathing is something we all take for granted, it keeps us alive, and yet it is something we carry with us all the time without even thinking and something we can use to focus our mind on.  Once you come to realise how amazing our breath is you understand how powerful it can be in reducing anxiety and depression.

Once you have got your head around the breath you can move onto a variety of both formal and informal mindfulness practices.  The idea of formal mindfulness practice is to take time out of your day to ‘formally’ carry out meditation.  These sorts of practices include:

  • Body scan – where you really think about the feelings and sensations in your body
  • Yoga – using the breath as part of a series of stretches and exercises
  • Pain Practice – using Ice Cubes to simulate contractions and learning to use the breath to cope
  • Walking meditation – concentrating on the rhythm of walking
  • Loving – kindness meditation – sending loving thoughts to your baby, yourself and others

Informal medication is how mindfulness slowly takes over your life and makes you look at life completely differently.  It’s all about taking opportunities to focus on the here and now.  It might be just taking 2 minutes at work to really focus on your baby’s movements or when you feel pain or an itch.  It could just be taking the time to really concentrate when you are brushing your teeth or walking in the park rather than letting yourself get caught up in your thoughts and missing what is happening in the here and now.

Mindfulness somehow seems to address all the issues around birth.  Whether it be the straight forward how am I going to deal with the pain of labour or the more complex emotions of fear and anxiety from a previous traumatic pregnancy and labour.  To the even more complex emotions of losing a baby in the past – there seems to be a way for mindfulness to help and so I would recommend it to anyone – no matter the situation.
Mindfulness also is so important in our future roles as parents.  Parenthood is filled with challenges, from the pain and struggles of breast-feeding, sleepless nights, sick children, temper tantrums, potty training, the list is endless.  Being able to take a deep breath and let go of our anxieties and judgements allows us to view all these challenges in a more clear way and make better more balanced decisions.

Mindfulness also strengthens our relationships with our partners, how can it not, values like patience and non-judgement can only ever strengthen a relationship.  Becoming parents is hard, having a baby will never fill gaps in a relationship, it will only highlight them all the more and gives so many new opportunities for problems to raise their heads. Mindfulness teaches us to be kind and loving, to try to understand how the other person is feeling and to take a breath before we say something we later regret.  I believe mindfulness helps to fill gaps in our relationships and so I know I will make sure I continue to use it to help me to cope with the challenges of life.

Almost 38 weeks ~ our baby loves chocolate!

Wanted to post something to cheer myself up and hopefully make you guys all smile.

I have been feeling a bit sorry for myself the last few days.  I have managed to pick up Riley’ cold and so have been feeling grotty on top of feeling enormous – not a great combination! Also I have heard from a few of my friends that things haven’t gone so well for them in their pregnancies, labours and with their children.  It makes it feel like there are so many ways things can go wrong and bringing up happy, healthy children is really more luck than good decisions.

But amongst all this I have noticed that our baby loves chocolate! Not 100% sure this is a good thing but it makes me smile.  So when I sit down with a glass of water and my favourite choccy bar then give it 5 minutes and suddenly I can feel baby moving around and kicking lots.  Always puts a smile on my face and feel we have something in common!

Image result for aero chocolate

Wednesday, 16 September 2015

37 weeks ~ the reality it could happen any time!

So yesterday I had a panic, I really don’t know what came over me as I have been feeling so in control but all of a sudden I just felt so anxious and out of my depth.  I haven’t been feeling quite right the last couple of days and I was sitting with Riley on the sofa and thought I had started having contractions… I guess it made me realise it could happen at any time now and I just don’t feel ready.  But do you ever feel ready?

I guess I have just been trying to keep such control over the process and all of a sudden the reality that labour is completely out of our control hit me.  It will happen when it happens and we’ll have to drop everything and just get on with it.  After having had my little panic and then doing some mindfulness I fell asleep and woke up in the night to realise it wasn't the start of labour and everything could carry on as normal… for now!

I think last night made me realise this isn't going to be easy and I need to work on my mindfulness more than ever now to keep some control over my anxiety and not let it get on top of me.   Let’s face it in a month the baby will be here and we will hopefully all be home getting used to life with a new little person in it.  The process that gets us there is out of my control so taking a deep breath and accepting things as they happen seems like a good way to live life right now!