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.
Wednesday, 30 December 2015
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.
Wednesday, 16 December 2015
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:
Sunday, 13 December 2015
Monday, 30 November 2015
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, 22 October 2015
Thursday, 15 October 2015
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.
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
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!
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
- 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
Wednesday, 16 September 2015
Wednesday, 9 September 2015
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!
Tuesday, 25 August 2015
Saturday, 22 August 2015
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.
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.
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.
Tuesday, 11 August 2015
Thursday, 6 August 2015
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.
Tuesday, 21 July 2015
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.
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.
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
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.