Thursday 22 October 2015

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!

Thursday 15 October 2015

Our first few weeks ~ settling in

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

Baby Blues

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

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

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

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


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

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

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

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


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


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


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

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

Tuesday 13 October 2015

Our time in hospital ~ waiting, waiting, waiting

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

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

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

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

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

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

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

Benjamin Dylan arrived ~ 2nd October 2015

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

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

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

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

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

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

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

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

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