Benji's first Christmas and the end of 2015

Benji's first Christmas turned out to be pretty great.  Riley really got Christmas this year and it was just so magical to watch her face light up with all the magic of Christmas.  We are starting to build our own family traditions, visiting the Christmas lights, Olympia and making church and the religious side of Christmas which is so important to me fun.

So here are a few Christmas photos, which sum up the excitement of the end of what has been a very eventful year with the arrival of Benji who really does make our little family complete.

 

 

Epilepsy and Pregnancy makes The Sunday Mail

Taking medication during pregnancy is always worrying but for some of us we have no choice which is why it is so important we have all the facts so we can make informed decisions.

I feel lucky that I was put on the safer drugs that carry the lowest risks in pregnancy and as a concequence it seems I have 2 healthy children.

But Epilim has been found to carry much greater risks both with birth defects and neurodevelopment  problems in children so why has it taken 40 years for this information to come out especially as ot was known when the drug was first licenced.

Now don't get me wrong I don't think Epilim should be band in women as I have friends who nothing else works for who don't want children. I don't think they should have to suffer with seizures and having a family is a person choice it's not what everyone wants so it shouldn't be presumed everyone wants kids.

But what is important isgirls and women are not put on Epilim as a first line drug and also the risk to a baby is made clear and effective contraception is given.

It's crucial women with epilepsy are given all the information and nothing is hidden from them so they can make truly informed decisions. That's why it's so good to see it in the papers - just hope all the truth comes out now about all the drugs.

If you want more information about the drug you are on then you can contact the UK epilepsy pregnancy register. It's also crucial to register with them if you are pregnant to make sure we have the best data on birth defects and how these drugs effect our children. Find out more here:

www.epilepsyandpregnancy.co.uk

Riley loves the water ~ and now she can really swim!

So proud of Riley - this term she swam 5 metres indepently (actually she can manage a width which is 7 metres). She just loves the water and next term will get to play with flippers and snorkels. We love aquatots :) Benji starts in January and because my seizures seem pretty controlled I'm going to take him. Very exciting.

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!

Sleep - the big issue!

Today a miracle happened, to many it may not seem much but to me it was a miracle - Benji was lying on the bed watching me put away the washing happily babbling away and then the next minute he was asleep! Then I realised it wasn't the first time, I didn't realise babies could do that... settle themselves, Riley never did... so it took me a good few minutes to decide how to use this time, do I shower, tidy the house, I just never had this with Riley!

It's funny as I had just been reading a great article on sleep in babies and a comment underneath said:

"I don't understand why parents have such problems with getting their children to sleep through the night - my two did from a few weeks old - it's all about a good routine"

Well I thought, I dare you to have a third child...

Sleep... I was a bit obsessed with it before having kids, but now at least it seems everyone is talking about it not just me!

I think for many of us with epilepsy sleep is so important, and I know I feel more at risk of seizures after a bad night. The thing with sleep is while it is something we have some control over, for example, chosing what time to go to bed and having good 'sleep hygiene' as the professionals put it... There is also a lot we don't have control over like whether out bodies and minds will actually allow us to drift off and whether the neighbours are planning to turn their music up to top volume... so no wonder it's such a hot topic in the epilepsy world and why I have always obsessed over it.

When we had Riley we got no sleep I mean I was literally adding up the minutes between her waking to get to a total of 2-3 hours a night. We tried everything and I mean everything - white noise, singing seahorse toys, lullabies, dummies, the list was endless. We had done everything by the book, starting a bedtime routine from day one and she just would not sleep. By 6 months we were desperate so we did controlled crying - Google it... I dare you!

Controlled crying is highly controversial. We had friends who had done it and their children seemed fine and we really didn't have much choice with Riley, we'd tried everything and I was going back to work soon and a seizure was a real risk. Well we used the super nanny technique and the first night she screamed for 2 and a half hours and I cried my eyes out. But the next day she woke up happy and was in such a good mood. By day 3 she was able to self settle herself in just a few minutes and it changed our lives finally I was getting a decent stretch of sleep just waking to give her a night feed.

Now aged 3 she sleeps through the night consistently and has never got out of her bed but she has very much been trained to sleep, she needs her routine and a quiet dark room to get to sleep which makes holidays a little tricky but we get round it by chosing holiday cottages rather than hotels.

Now Benji seems like a saint in comparison although if he were our first I think we'd still be exhausted - as I said before he can just drop off to sleep sometimes which is a new experience for me.

He just struggles to settle at night to begin with and doesn't always settle after his night feeds and quite often wants to suckle on our fingers (he won't take a dummy). Once he is asleep he'll sleep for about 4 hours between feeds which gives me a decent stretch of sleep. I don't know how I'd cope with a 3 year old as well with any less sleep so I am so grateful he sleeps better. Now we just need to work on him self soothing to sleep at night so hopefully we don't have to go through controlled crying again!

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.

Feeding

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.

Sleeping

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.

Epilepsy

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.

Smiles

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!).

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.

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!

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!

Becoming a big sister!

Riley is well aware she's going to become a big sister in the next few weeks and she seems really excited.  She talks to my bump, kisses and cuddles it and tells everyone she's going to be a big sister soon.  She seems quite aware of what having a baby around entails, she breastfeeds her teddy and can change a nappy!  All in all she seems super excited which is fantastic.

But I am under no illusion that this is going to be an easy transition for her, even now there are little tell tell signs which let me know she needs our support even more at the moment.  Every time someone special leaves we have tears at the moment and asking for 'one more' kiss and cuddle.  But as I have said in previous posts all we can do is show her we love her and take each day as it comes.

I know she is going to be an amazing big sister.  Here's a picture of us on our last holiday as a little family of 3!

Injection time ~ and a chance to build a few life skills!

I had been thinking a lot about the best way to give Riley her MMR and preschool boosters as to me giving a baby two injections at once seems quite mean but at least they don’t remember it after.  But take a three year old who is just developing her own strong opinions on how things in her life should work and it seems to me like a recipe for disaster.  Added to that the fact that I know vaccinations can make you feel a bit rough I decided it would be better to have them done separately.
 

Then I realised I could time Riley’s MMR with my whooping cough vaccine, it seemed like the perfect situation.  We discussed what would happen at home when I had made the appointment and that we would both be getting injections in a few weeks which might hurt a little bit at the time but would make sure we didn’t get ill.  Riley seemed happy with this and after asking a few more questions went back to playing happily.
 

So yesterday was the day and it was pouring with rain, so after a 45 minute walk to the doctors I was soaked and feeling a bit fed up (it’s days like yesterday when I really miss being able to drive).  As we entered the nurses room the nurse said, ‘did you get my message?’ I said ‘no’ and she explained most people get the two vaccinations done together as it can be quite traumatic for the child.  Riley can’t have her pre-school booster for another few months so the nurse suggested we waited.
 

I explained we had talked about what was going to happen and I wanted her to have her MMR now and pre-school next year (as in a couple of months we would be a bit busy with a new baby) and Riley then said ‘Mummy’s going to have her whooping cough injection first and then I am going to have my injection, I’m a big girl, I’m three’.  I think the nurse was quite surprised that Riley was so clued up on what was about to happen and yet not making a fuss at all.
 

Riley sat on my lap while I had my injection and then snuggled into me for hers.  She then turned to the nurse and said ‘that didn’t hurt and that she didn’t want a plaster because mummy didn’t have one’ and then she chose a sticker with a dinosaur on and explained it looked like Dub (her imaginary dinosaur) and skipped out of the room saying a cheery ‘thank you, bye’.  The nurse smiled and said if only they were all that easy!  Riley then walked home skipping in all the puddles as she went.
 

We’ve always tried to be open and honest with Riley about everything, explaining things to her in as simple a way as possible but without hiding things from her.  I think sometimes people don’t give young children enough credit for what they can deal with and maybe we shelter them too much.  It’s all about giving them the tools and support to be able to deal with what might happen in life – life’s not perfect and does have good and bad bits and part of our role as parents is to equip our children to deal with this and make sure they know they are loved and cared for no matter what happens.

For us my epilepsy means we have no choice but to talk about some difficult situations.  Things like injections are a good exercise for doing this too and I am so proud of how brave and grown up Riley was yesterday. 

34 weeks ~ birth plan's in place

I cannot thank Kim the epilepsy midwife enough for all she has done to get us to this point.  It has been her support which has given us the confidence to stand our ground and push for what we want.  We are now finally at a point where we have a clear plan which is agreed by both the consultant midwife and obstetric consultant at the hospital.

Location

We wanted to be in the birthing unit by due to the size of the rooms we have agreed it would probably be better to be up on the ward but they are going to move the bed and medical equipment to the side of the room and put mats and a birth ball out.  My labour will be managed by the midwife unless anything goes wrong.  I am going to have intermittent monitoring of the baby so I don't have to be strapped to equipment.  No IV - something we have thought long and hard about but due to me never having been in status it seems like an unnecessary intervention.

Pain relief

Mindfulness and moving around using different positions as well as a TENS machine which I found fantastic last time.  Then gas and air as needed. If I need any intervention such as forceps or a c section I will have a spinal instead.

Discharge

We're planning to be discharged reasonably quickly and they have said we can have a private room so that Rich can stay with me, so it's not the end of the world if I have to be in for one night.

It's just been nice to have it acknowledged by both the consultant midwife and the consultant that what happened last time was pretty traumatic for both Rich and me.  The fact they understand that I know my condition the best and are listening to what I want is refreshing and helping me feel more confident and less frightened about this labour.

As far as I am concerned, I am still seizure free and well.  There are no concerns at the moment with more or baby and baby has their head down and seems to be getting into the right position.  So all is looking positive.

Don't get me wrong, I know a lot can change in the next 6 weeks, but all we can do is prepare as best we can and go with things as they happen.

Epilepsy & Me ~ BBC Three

Last night BBC Three showed a fantastic documentary as part of their ‘Defying the Label’ season.

The documentary looked at what it was like to live as young person with epilepsy.  It particularly addressed the hidden nature of epilepsy.  Something which I think can be difficult for us to come to terms with but also those around us.

What happens when people can’t see your disability? It’s hidden and can strike at any time, without warning – when you’re walking down the street, in a classroom, at a party or on a date.

The programme looked at four young people with epilepsy and covered a wide range of topics in a short time.

It was also filmed mainly at Young Epilepsy, a place which I know very well from working there for two years and so it brought back a lot of memories of that time of my life too.

Loss of independence

One of the biggest things for me was how closely supervised these young people are.  How can you grow up and lead an independent life when you can never be left alone?

I feel blessed my family have never been overprotective of me.  Even when my seizures were new and much more regular they still allowed me to go off to university.  They must have worried about me, but they never let that show and I am forever thankful to them for that.  I think sometimes we don’t give the people around us the benefit they so much deserve.

I also think we should encourage family and friends to speak out more about their own experiences of the person’s epilepsy.  So many of the problems for people with epilepsy is being limited from doing things because people don’t think it’s safe or don’t know how to reduce the risks. How can we ever change this if the amazing people who support us don’t feel they have a way to talk about how they allow the person they love so much to live life to the full.

Big decisions

The programme also looked at 14-year-old Thomas who was having tests to see if his epilepsy was due to a newly discovered brain tumour.  After many tests it appeared that the tumour was the most probable cause of his seizures – he now has to decide whether to go for the brain surgery which has a 70% chance of curing his epilepsy but risks leaving him with speech and memory problems or to live with his seizures.  

These are big decisions for people so young to face and part of me feels lucky that surgery has never been an option for me – could I make a decision that big?

Stress, anxiety and excitement as triggers

One of the people I related to most was 24 year old Amy, she obviously had no idea when she had had a seizure, the way she was when she came round from her seizures rung true for me, that being confused but not sure why.

She was desperate to live an independent life and was looking for a long term placement, she found The Meath in Godalming and set her heart on it.  Her seizures then got worse so her supervision increased… somehow I could relate to her, doctors put her increased seizures down to her medications but I’m not so sure, I think often the emotional triggers of seizures are overlooked because we can’t fully understand them.  But I know my focal seizures are triggered by stress, anxiety, excitement, it’s a hard thing to accept because all those feelings are part of life, we need to feel them but what do we do if by feeling these intense emotions we end up triggering a seizure?

Driving

The only area I felt the programme didn't do justice too was the issue of driving.  And that is a biggy for so many people with epilepsy.

21 year old Olivia hadn't had a seizure for four years and wanted to learn to drive.  I really felt for her as it seemed like a lot of the people around her weren't supportive of her learning to drive. 

They repeatedly said you needed to be seizure free for three years before you could learn to drive and I think they needed to be clearer about his as the general rule is one year seizure free.  I don’t know whether it was her family who had told her 3 years or apparently there are rare cases where due to being on controlled medication you can’t drive but it was a little misleading and I think will lead members of the public to question people with epilepsy driving after only a year, something we really don’t need.

I really felt for Olivia because it seemed like her family didn't have much faith in her abilities.  It made me feel so blessed to have always had my family fighting for my independence, be it carrying on with the activities I loved so much, horse riding, skiing and swimming to getting married and having a baby.  

It’s a scary thing letting a person you care about so much take risks, part of you wants to keep the safe and as a parent now I can understand that all the more.  But for my family it's always been a case of how can we do this but with the least risk, be it wearing a helmet and body protector riding or getting an alarm when I had our baby.  I can’t thank my family enough for their attitude towards my epilepsy, they are amazing.

If you are looking for information on driving rules Epilepsy Action has some great information here.

You can also watch the programme on BBC iplayer here until 10th September 2015.  Definitely well worth a watch - inspirational young people showing us how to live life to the full with epilepsy.

31 weeks ~ not long to go now!

So less than two months until my due date and things are coming together.  So just wanted to give a little bit of an update.

Community Midwife Appointment

This week I had another appointment with the community midwife.  Again she was lovely and very understanding.  I had decided that I was going to ask if there was any chance of me having the baby in the midwife lead birthing unit at Epsom Hospital... if you don't ask you don't get! I was all ready for her to say no when to my surprise she said that was where she was thinking would be the best place for us!  It's early days as she can't grant us this but we should be seeing the consultant midwife soon who will be able to grant us this and then it's just a matter of running it past the doctors... ok so maybe not so easy but the fact is it's not been ruled out! Yay! Fingers crossed nothing goes wrong between now and when baby arrives.

I am however measuring quite big and so need to have another scan to check the baby isn't too big.  I am fairly sure it is all fluid (especially as my placenta was so big last time) and also the baby is lying right in the middle of my tummy.  But you never know until you scan, but hopefully it's not going to be a huge baby!  I think we're going to take Riley along to the scan which I think she will love :)

Now I am really working on my Mindfulness and trying to practice that as much as I can so that I am prepared for labour as best I can.  I am also finding it useful in all areas of my life so it's definitely something I would recommend to anyone.

Getting ready for baby!

We have bought a new buggy, a Phil and Teds Navigator 2 which has a dead break built into it.  The problem was that I wouldn't have been able to attach a buggy board to my Quinny because of the breaks so that is now up for sale - if you are interested drop me an email as would really like it to go to someone with epilepsy if possible.

We have also ordered a Moses basket this time - I think it will be worth it as I can then have the baby next to me in bed whereas last time I had to get up to pick the baby up out of the cot.  It might be a waste of money but if it gives us any chance of some sleep I'll pay it!

We've also started decorating the babies room, we have bought a matching curtain, blanket and lamp shade set which has made the room seem more like a nursery and less like a spare dumping room!   Our lovely friend has also given us a lovely throw for the sofa so it is really starting to feel like a baby's room.

Riley's chosen the babies first clothes so all that is really left to do is to get all the old clothes down from the loft and wash them.

Riley's growing up

I can't believe how grown up Riley is becoming.  She is going to be doing an extra couple of half days at pre-school from September.  I am really making the most of the time I am spending with her at the moment as I know it's not going to be as easy when the baby arrives.  I am really looking forward to being on Mat leave so that I can spend a bit more time with her. 

She's now learnt how to use my phone now and can call my mum or Rich if I have a seizure - I feel like we have got to a point now where if I had a seizure when Riley was around she'd be able to cope with it and know what to do.  I find that amazing, that at only three she is able to take on so much responsibility.  She is amazing and I feel so lucky to have such an amazing little girl.

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.

 

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 3^rd Birthday.