Epilepsy Action Diary - summaries of my very long diary

Epilepsy Action asked me to write a sort of diary to possibly be used on the pregnancy section of their website...

The next few blogs will be the pieces I wrote for it...  hopefully it will give people a more summarised account of my pregnancy as not sure people will want to read the whole thing, thus I have tried to add headings to my blogs...

The first few weeks... ~ ups and downs

I think I probably made the labour sound aweful, for me it wasn't that bad and I quickly forgot about all the trauma, I think Rich is still traumatised by the whole thing!  I think often how the father feels isn't taken into account enough.

I saw the midwife a few times, I was in quite a lot of pain from the stitches initially, made everything harder, but it did get better and in a couple of weeks I was pretty much pain free.  We then saw the health visitor a couple of times and that was it, we were on our own, like every other Mum, the same challenges.  Breast feeding was going ok, we had some problems, a bit of pain and mastitis but worked through them and by 6weeks we were sailing.  Was so practical, didn’t need to worry about bottles, so was loving it.

My friends had cooked me some meals which was fantastic, such a help.  Especially when Rich went back to work.  Unfortunately my friends little boy came round and then got chickenpox so we were isolated from other children for a couple of weeks which was hard.  She also got a nasty cold at 8weeks which wasn’t very nice for her and a bit of a challenge for us, she was not a happy baby.

The first few weeks were really hard.  I loved her with all my heart but I was also still upset about my Grandad, he was such a huge part of my life so when he died my life changed, but I never got a chance to adjust and come to terms with life without him before Riley arrived changing our lives forever.  I just missed him so much, everything reminded me of him and made me cry, all the hormones, sleep deprivation and crying I’m sure didn’t help but I just felt so guilty, having Riley was supposed to be a happy event, Grandad would have wanted me to be happy but I just felt so sad.  I started to think it was post-natal depression, but then I decided to write down all my memories of Grandad and make a photo album of all the photos from the slideshow we made for his funeral, I started to feel happier, started to remember all the happy memories of Grandad rather than just missing him.  Just writing this gives me a lump in my throat but I have so many special memories of him and now we have Riley I like to think there’s a bit of him in her.

I also wanted to add something about bonding with your baby.  I think a lot of books and people paint the picture that as soon as you have a baby there is a completely unconditional truly amazing bond that forms between mother and baby.  I think when you don’t get that feeling often people feel guilty and I think that probably plays a part in postnatal depression.  I have now read many books which say it is a bond which forms over the first few weeks.  At the time Riley was born I loved her and wanted to care and provide for her but it wasn’t the magic bond people had spoken about, the first couple of nights when I was exhausted and in pain I found myself relieved when they took Riley away for a few hours but then felt guilty and like I’d let her down.  Now 9weeks on, I am devoted to her, would do anything for her, it is truly unconditional love, even when she’s screaming in the middle of the night and I’m totally frustrated with her, I love her with all my heart, but that has grown over time, no-one should feel guilty if it takes time to bond with your baby, it is totally normal.

She is growing so quickly, she has amazing head control so looks older than she is and she is very inquisitive and alert now.  She also had her first proper smile a couple of weeks ago and seems to smile more and more each day.  We now go to a baby group once a week which my friend runs.  It’s great to meet other parents and share experiences and advice.  We also go to a sensory group which is amazing, she is so alert during it, it gives her so many different experiences and gives me some ideas for things to do at home it has definitely helped me feel less isolated.  We have also been out with friends and on days out which has helped me realise life hasn’t completely changed we just have to take our beautiful Riley into consideration when we do things.

The most amazing moment so far is when she started smiling at us! We have a beautiful healthy baby girl, I still can’t quite believe it but I feel so lucky to be her whole world and for her to be such a big part of ours.

 

40 weeks (almost) ~ Riley arrives :)

I wasn’t sure how much detail to go in to with the labour as from an epilepsy point of view things couldn’t have gone better but there were complications as any birth can have and I suppose that is why I decided to include it.  I hope it doesn’t scare anyone as we were both fine, but I hope it shows things don’t always go as anyone planned, in fact very rarely is it that perfect birth some books describe, but likewise it is very rarely the drama of one born every minute (so my midwife told me, I was too petrified to watch it!) Most births are somewhere in between, as mine was…

The funeral had been an emotionally draining day and Rich and me spent the next day quietly at home and this is where the theory of stress having an impact on when a baby arrives, suddenly all the stress was over, I was suddenly able to grieve, to relax and think about everything. 

On the day after the funeral at 6pm I started to feel something, I couldn’t say they were definitely contractions, I can’t really describe what I felt but I knew it was happening for about 30seconds every 5-10minutes or so… after an hour or so I mentioned it to Rich.  We didn’t really know what to do as I couldn’t be sure that’s what they were so we carried on normally.  By bed time I was pretty sure I was in the early stages of labour, the contractions were now painful, not excruciating but definitely pain not just discomfort.  By midnight I had put my TENS machine on which was managing the pain quite well.  But by 4am I was struggling a little and because the doctor had said to get to hospital before the pain became unbearable we headed off to the hospital.  I rang Emma to say we were heading in, afterwards she said she knew it wasn’t imminent because I was able to talk to her myself! When I got to hospital the contractions almost stopped and they checked me over and said I was only 1cm dilated.  When the midwife said things probably wouldn’t really start moving along until that evening and I could go to the ward or go home I decided I would rather be at home.

We returned home about 5.30am and I headed up to bed to try to sleep.  There was no way I could sleep, the boost button on the TENS machine was hardly touching the pain so after about an hour I came downstairs to tell Rich exactly how much pain I was in.  I felt really pathetic, why couldn’t I deal with this pain if I was so early on in labour?  But by 7.30am I was in too much pain to stay at home, Rich rang the hospital for advice, it was handover time and as I had only left a little while before they suggested I have some breakfast and then head to the hospital.  So there was me trying to force down toast in the 2minutes between contractions that I could barely breath through, looking back it was quite funny.  Rich had rung my Mum for some moral support and she was about 5minutes away when I told Rich I needed to go to the hospital NOW, I couldn’t wait 5minutes even for my wonderful Mum.  So we went in, I couldn’t even walk from the car to the ward without stopping multiple times just to breathe through the contractions, I was feeling really pathetic… when I got there I saw a different midwife who turned out to be amazing and also Emma’s supervisor.  They gave me gas and air straight away as I was desperate for something more than TENS, it’s strange stuff gas and air, takes the pain away to some extent so I could think straight but I also felt pretty light headed after each breath!

They then examined me and found I was 9cm dilated!  That’s almost enough to start pushing.  They couldn’t believe how quickly I had dilated and said if I have another baby they wouldn’t be letting me go home if I came in at 1cm!  I was then not feeling so bad about not being able to deal with the pain at home.  They straight away put an IV line in and had IV diazepam prepared, I took the 10mg Clobazam which seemed to chill me out a bit.  It then had to be decided whether to put an epidural in, as my waters hadn’t broken there was still time and the plan had always been to put one in… but it would slow everything down, and because I had progressed so fast it was possible I could have the baby pretty quickly with just gas and air.  However there was also the possibility it could take longer and there wouldn’t be the option of an epidural and I could seizure and end up needing an emergency caesarean under general anaesthetic which was what everyone wanted to avoid.  Its times like that when a crystal ball would be useful.

We decided on the epidural, the doctor came and got me to sit over the edge of the bed.  My contractions at that point were lasting about 2minutes with a 2minute break between them.  Between each contraction the doctor was saying stay still and relax!!!  Well I wasn’t about to move knowing they were sticking a huge needle into my spine but likewise it was difficult to relax when every 2minutes I was in absolute agony and I had to give them warning of when the contraction was coming on so they didn’t stick it in the wrong place!  Luckily it was at this point Emma walked in. Rich had rung her when we were leaving home; she knew it was real this time as I couldn’t talk to her, so she’d left straight away and a train and decent walk later on a bank holiday Sunday she’d got there!  It was the one moment in the whole process Rich had to sit down and Emma stepped in for moral support and I had the benefit of not seeing the needle and if I was having to watch a doctor take 6 attempts to get a big needle into Rich’s spine I’d probably want to sit down too.  My back looked a bit like a pin cushion!

The epidural took the pain away completely and gave me the chance to recover and rest, and they also set up some IV fluids to keep me well hydrated.  However like they said the epidural also slowed everything down. They burst my waters, which is a very strange sensation! They had to top the epidural up a couple of times and one of the negatives of an epidural came apparent, I couldn’t go to the toilet so had to have a cannula put in, I think that was the start of becoming less concerned about the awkwardness of the whole situation… I wasn’t allowed to eat anything in case I needed an anaesthetic so I was starving!  A couple of hours later I had dilated enough to start pushing.  The epidural makes it harder to push as you can’t feel the contractions and don’t have a natural urge to push.  They monitor your contractions (and the baby’s heart beat) with a monitor strapped to your tummy and they tell you when to push.  Emma was now playing a more active role as I wanted if possible for her to deliver the baby and by this point all inhabitions had gone out the window, people had told me this would happen over and over but I never believed it would happen, but now I can believe them!

I have never been given so many pills and injections before in my life and it got to the point where I didn’t know what they were giving me anymore… looking back I think maybe I should have asked more, I am the ultimate in needing to know exactly what and why medical professions are doing something but at that point I didn’t care anymore!

After an hour or so things weren’t going anywhere and the baby hadn’t turned so it was decided to try forceps.  However an emergency casaerean had just gone into theatre so I had to wait until they were finished.  My Mum, Nikki and Dan had been waiting in the waiting room all day and by this point Nikki and Dan had had to leave for a gig they were going to and Nikki had got a bit upset about having to leave which is quite touching as she is not one for showing her emotions too much! Because we had to wait for a space in theatre the time between Rich telling them things weren’t going so well and that we were both alright was a good 3hours, Mum was worried something had gone terribly wrong which I feel really bad about, it was only 2 days before she had been at her Father’s funeral, it was all a bit much.

My temperature had increased and my heart rate was quite high, also the baby seemed a bit stressed so it became a bit more urgent to get the baby out. I was taken into theatre and Rich disappeared, I kept thinking where’s he gone, he’s going to miss our baby being born, however they take father’s away while they prep and get consent from the mother although they apparently didn’t tell Rich that!  Emma told me after the event everything was prepped for a caesarean as they didn’t think forceps would work.  Everyone in the theatre introduced themselves and I then had to sign my life away, it’s hard to sign your name lying down with the paper held above you!  Then Rich came back, I was so relieved.  It’s hard to tell what happened next as I had been given a strong epidural so couldn’t feel anything from the waist down.  All I know is I was linked up to lots of monitors, started off at one end of the bed and ended up at the other while being told to push and then had a baby plonked on my tummy briefly before they passed her to the paediatrician, which is a horrible feeling, like something’s really wrong with her, all I’d heard is the cord was round her neck… it was an intense feeling of joy and fear.  Her breathing rate was up but she was soon placed in my arms so there couldn’t have been too much wrong with her!  They thought she was 10lb but when they weighed her she wasn’t that much.

Riley Elizabeth Cobbold was born Sunday 3^rd June 2012 at 18:00 weighing 8lb8oz

They then stitched me up as they had had to cut me which apparently is better than it tearing!  I was then taken to recovery, it was all a bit of a blur and I was given injections, IVs given oral medication and had no idea what I was taking.  I could hear them saying they couldn’t stop the bleeding.  It was unfortunate that by the time I was in recovery it was 8pm which was handover time so it was a new set of midwives.  I was in so much pain, like nothing I had experienced before, even though labour, and I couldn’t help but scream, I hadn’t made a fuss through the whole labour but this was unbearable, they were doing internal examinations and I was just screaming and gripping Emma’s hand, Rich had gone with Riley so Emma stayed with me.  The midwives were just saying she’s just in pain because she’s had a baby, Emma was telling them she had known me since I was 2 and I had never made a fuss about pain, I finished a Netball match with a broken finger!  She was telling them I must be in a huge amount of pain and to give me some pain relief.  In the end they gave me ora morph which didn’t help so Emma eventually managed to convince them to give me tramadol which seemed to take most of the pain away. They gave me some toast which was the first thing I had eaten since the few mouthfuls of toast that morning, and some water which they gave me some oxygen tubing to use as a straw which I found quite funny, think they thought I wouldn’t know what it was… obviously didn’t know where I work!

Then I got to see Riley properly they lay her next to me, she was beautiful.  Then Emma helped me breast fed her, I was so tired it didn’t really go in but I found overnight I had to learn even if I was exhausted, Riley needed me, which was a pretty scary thought… for some reason they kept doing blood sugar level checks before and after feeds so she kept being stabbed in her toe, it was horrible to see her cry.

It got to almost mid night and Emma said she had to go to get the last train home, she was really apologetic and said she could stay overnight to support me, I said not to be silly, she’d been there since 9am, supported us all the way through, done so much for us, she needed to go home and rest.  Emma had been my friend since we were 2, we had been through a lot together and now she had been there on such a life changing day of my life, I couldn’t thank her enough, she was amazing.

We got to stay on the recovery ward until the early hours of Monday which was the first chance we had to be as a family, and as I couldn’t get out of bed it was a relief to have Rich there.  But I was then taken to post natal ward, where partner visiting hours were 9am – 9pm so Rich had to leave.  It was very difficult to look after her that night, I was not allowed out of bed due to the epidural, I was bleeding quite heavily and had a high temperature but luckily Riley was quite sleepy due to the trauma of the whole thing, but still getting to grips with breast feeding in that situation was not easily. All the tape came off my IV at one point so I was sitting there holding my IV in myself!!!  I found it hard to know when to buzz for help, I wanted to be able to look after her myself, didn’t want it to seem like I’ve failed, but looking back I probably should have asked for more help from the midwives.

The next day the doctor came to review me, he said I could get out of bed so I straight away asked to have my catheter out and was out of bed literally within minutes, putting on some proper clothes and making myself feel like a human being again!  In the light of day Riley was beautiful, I couldn’t believe we’d made her, I just wanted her to wake up so I could cuddle her properly.  She was a little bit battered and bruised from the forceps and had blood plastered in her hair but to me she was beautiful.

I was so relieved when Rich arrived at 9am, it gave me a chance just to rest, have a proper shower and just having him there, we were a proper little family.  My Mum, Dad, Nikki and Dan visited that afternoon which was lovely.  One of the anaesthetists came round to get some feedback, I explained about the lack of pain relief after the epidural, he apologised and seemed to take it on board which was really positive.   That evening was the lighting of the Jubilee Beacon which my Grandad had built, I was a bit sad to miss it, Rich said he wouldn’t go but I said Grandad would want him there and he couldn’t stay in the hospital past 9pm anyway!  I saw the pictures later on, it looked amazing.

The second night in hospital was very hard, Riley was extremely unsettled, and couldn’t blame her, she probably had a head ache being pulled out by her head!  She cried and cried, all the midwife said was she wanted feeding, all night long.  They did take her away from me for 2hours and I felt awful the next day, I wasn’t upset about her being taken away, I was relieved, I was exhausted and needed to rest.  When they brought her back she was still crying, she would only stop if she was feeding so they put her in bed with me, I explained about my epilepsy and that I had been advised not to share a bed with her as my medication made me sleep deeply and I could role on her.  But I was exhausted and it seemed like the only way to settle Riley and I didn’t want her to be so distressed either so she stayed in bed with me and the midwives checked on me every 15minutes.  One of the midwives took her early in the morning when she had finally settled with me walking up and down the ward, she was really kind and said not to feel like I’ve failed, she said she won’t stay asleep as she could smell my milk, it’s like a roast dinner to us!  The next day when Rich arrived I was exhausted and desperate to get home; I couldn’t do another night in hospital on my own.  They put up my last IV antibiotics so then there was no medical reason to stay.  I asked for some advice on breast feeding and they sent round a specialist care assistant who helped me so I felt pretty confident to go home from that point of view.

While we were waiting to be discharged the hospital photographer came round with an album of a beautiful baby, all dressed up and clean.  I looked at Riley, while I thought she was beautiful she had bruises all over her face and blood plastered in her hair, I was pretty sure I wouldn’t be sending pictures of her at this point to the family so paying £50 for a set of photos would be a waste of money.  She then said she could take a hand print and put it onto a ceramic tile, that seemed perfect, something truly special you could never get back.  As the bruises faded over the next few days we found she had “stork bites”, red birth marks on her left eye, forehead and back of her neck, they will fade over time but I think they are quite appealing and make Riley, Riley.

I was discharged late morning, they gave me lots of useful information.  We then had to wait a little while for a doctor to check Riley so she could be discharged too, she was fine other than they found she had a slight clicky hip which was scanned 6weeks later and found to be totally fine, which is usually the case.  I stayed for lunch as I had ordered chocolate mousse… yum yum, didn’t want to miss out!!!

So we returned home after lunch on Tuesday 5^th June, her due date.  The first night was tough, again she barely slept but there were 2 of us, a team so it made it so much easier.  

39 weeks ~ my Grandad's Funeral

In the last week I decided maybe I should address my vitamin D deficiency as I was worried it could impact on my baby if I was breastfeeding, I had worked with a little boy who had had a cardiac arrest as his mother was Muslim and so being wrapped up all the time had very low vitamin D levels which had been passed onto her baby. My GP was quite vague as many GPs are, I again got told to go out in the sun more, I am really fed up with that comment, I do go out in the sun, I make a real effort to go out in short bursts so I don’t wear sun cream but don’t get burnt either.  I explained that my AEDs can cause a vitamin D deficiency which is why osteoporosis is more common in people with AEDs; vitamin D is involved in the laying down of calcium in the bones.  The doctor did go and find my old notes and prescribed me a different vitamin D supplement as the last one I was prescribed with calcium made me very constipated, I don’t think it was just that as still having to take a sachet of Movicol and a couple of spoons of bran to stop me being constipated but the first supplement definitely made it worse.  They also took more bloods to check my levels.  When I picked up the supplement from the chemist I found it was the same dose as the spray I was taking from Holland and Barrett so decided to carry on with the spray.  The GP rang me to say my levels were low but not seriously low as my last blood test a year ago showed and he said most people’s levels are at that level anyway.  So I decided to leave the possibility of vitamin D injections which had been suggested by my epilepsy specialist for a future time, just something to keep in the back of my mind, maybe to review at a later date. 

My Grandad’s funeral was on the 1^st June… we had made it.  I was a little worried as I had felt groggy for a few days and my Mum had said before she had me she had just felt a little under the weather. The funeral director seemed a little concerned as I got into the funeral car, think he was worried my waters might break and looking back he had good reason.  It was a very emotional day, so many people there who had so many wonderful memories of him.  It was a beautiful service, what he deserved.  But it was too much for me, I cried so much, sitting there feeling baby move, made me feel so sad he never met the baby. Nikki sang, I don’t know how she managed it, but at the end we both broke down together.  The wake was emotionally easier, was really lovely to see family who I hadn’t seen in a long time.  Was lovely to talk about Grandad, share memories and there was also the imminent beginning of a new life, my baby’s life, it was something else to talk about.  It was a lovely day and we sat out on the balcony Nikki, Dan, Rich, me, Jenny and Kristen who both worked in the yard.  We had a good natter, Grandad had played a big part in bringing us all together in the first place, he bought and had such a big part in the yard and that was where we had all met.  There are so many wonderful people I have met through the yard.

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.