This entry will carry on from when I delivered Noah up until we were discharged from hospital. Adjusting to motherhood means this entry has taken me longer than usual (that and Chris has been borrowing my laptop!)
After being a drill sergeant to deliver Noah our midwife turned back into the lovely woman she had been all through labour. She gave me time to rest and recover, she had been understanding about the epilepsy and knew a bit of a break would be what I needed. Then I was taken off to the postnatal ward. Luckily due to the epilepsy they gave us a private room which meant Chris could stay with me. I don’t know what I would have done otherwise as after taking Clobazam and giving birth I was in no fit state to look after myself never mind Noah. Also this turned out to be doubly useful as we stayed in hospital for three nights following Noah’s birth due to him having jaundice and me not feeling 100%.
Care on the ward
Now this was interesting. Let me start by saying some of the midwives were amazing and they do a hard job, they are clearly under staffed, under paid and over worked – I take my hat off to them. But some of the midwives and doctors I saw in the days following Noahs birth were shocking. I think some of them needed to really reconsider what they do for a living. My initial midwife when taken onto the ward was amazing. She helped me change into my own PJ’s before I saw my Dad and Father-in-Law. She helped me stand to brush my teeth and do all the things that made me feel a bit more human and got me back on IV fluids to try and make me feel better. She was amazing and said if visitors got too much to let her know and she would make them go.
The first problem I encountered was the doctor who came round on the first morning after having Noah. Her words to me “Your birth plan says you are to see a member of the neurology team before you are discharged, I don’t understand why”. My jaw hit the floor, my notes were very clear on why I needed to see someone if she had just taken two minutes to flick further through them. Once I explained to her she said she would get the on call neurologist to come and see me. The on call neurologist was nice enough but having to go through my very long history with her was tedious. I explained to her how awful birth had left me feeling in terms of the epilepsy. Her plan of action was “Well you can up the Keppra you have space to as you aren’t on a very high dose”. My response to this was that I wasn’t a doctor and didn’t feel comfortable with this option and making adjustments based on my own judgement. I explained to her what had worked for me previously in terms of Clobazam. She went away and came back and said the sensible plan would be to take Clobazam to cover me until I got a few good nights sleep and then to make contact with my own team. At this point I just nodded along with her I was too tired to argue. Noah was sleepy following labour because of the medication I had taken, but as none of the nurses were clued up on epilepsy none of them could answer my questions. I was getting frustrated.
Then it became apparent Noah had jaundice adding to him being sleepy. Noah was sat just below the treatment line so we would be staying for a few days, not just for me but for Noahs sake too. Thankfully we started to see a small improvement as the medication wore off, and my guilt about taking the meds subsided. I then felt confident enough to take some Clobazam which I had been putting off because I wanted to keep a close eye on him. Chris was amazing over these few days doing every night feed and being up with him, but being a new Mum every noise Noah made had me awake.
This was an area that drove me nuts. On the second night we were in the hospital a midwife came in at 1am to do the jaundice test on Noah. She then at this hour started questioning my decision not to breast feed. I was already tired and this left me feeling like a totally bad mother. However one look at my notes she would have known why I had chosen not to. Then the following morning I then had four different midwifes in the space of an hour and half come in and give me conflicting information about how to look after Noah and what to do about his feeding and help his jaundice. This all just became too much after basically having been shouted at at 1am. I ended up phoning my Mum in tears, I just couldn’t get my head around it all, I was an emotional total wreck, it all got a bit too much. Mum told me to just nod along and agree with whatever they were saying and that we would be home soon enough and being able to do it my own way trusting my mothers instinct. A short while after this another doctor/nurse came in and was talking to me and asked me how I was, this of course led to tears. I was sick of having to justify myself to people who didn’t understand. She was fantastic, told me it was ok to cry and she that she understood how overwhelming it all was. It made me feel a million times better and I finally stopped crying.
This was until the nursery nurse came in to see us, it was clear it was Chris who was being hands on, and again had she looked at my notes she would have understood why. However her attitude was “You’re Mummy, you feed him” “you’re Mummy he needs you”. Yes I bloody knew that, don’t you think I felt bad enough? I had almost had a seizure when holding my son, I disliked this woman instantly, it was fair to say we got off to a very bad start. However she became my saving grace. She took the time to support me, help me build a bit of confidence with Noah and rather than telling me what I was doing ‘wrong’ encouraged me as I gained confidence with Noah, and kept telling me that I knew him best. Maybe I shouldn’t have been so quick to judge her but after 12 hours of people not being very understanding she actually became a bit of a saviour.
Then came the day we were going to be discharged, although we didn’t know this until 5pm and we didn’t go until gone 7pm. We were sat twiddling our thumbs waiting on further result for Noahs jaundice checks and who walks in but my obstetrician. He had no reason to be there and had just popped in to meet baby and see how we both were. I have never been so thankful to see someone in my life. I started talking to him about my concerns about the meds on Noah. He was so reassuring about Noah being sleepy explaining everything he had before, he also listened to me talk about my concerns with the jaundice. He had a look at Noahs records and had a quick look at him. He said that Noah was perfectly healthy and would be ok. He added that the moment Noah was born he stopped being his doctor but he would go and speak to the staff and try to get them to explain things more clearly or at least address my concerns. He also asked me about if anything had been put in place re my medication and a follow up appointment. I explained what had happened. He took it upon himself to ring one of the epilepsy nurses (on their personal mobile) and explain I was there and had given birth (no one had thought to tell them). I thanked him for everything he had done. So many times this man had gone above and beyond what was expected of him. I was well aware he was a large part of the reason Noah had arrived safely and ensured we both received the best care possible, even when technically we were no longer his responsibility. I will forever be grateful to him.
Within half an hour of that phone call one of the epilepsy nurses from my team appeared. Finally someone who knew me, my history and had some idea of what my neurologist would want done. She asked how I was doing both in myself and with the epilepsy. I explained to her that I had been a bit all over the place. She suggested that I took Clobazam for two nights running just to try and give myself a bit of a break and then see where we went from there. She covered the basic safety information for me again as I was feeling so rotten and suggested I took as much help as I possibly could from friends and relatives. She also said she would also organise an appointment for me in clinic to start organising a med decrease.
Then we were discharged. I almost ran out of the hospital. We had been in there for a week and I was so happy to be breathing fresh air! I also had the strange feeling of expecting someone to come and take Noah back, I couldn’t quite believe he was mine. That first night at home was surreal. I think me and Chris spent a lot of the night awake, talking and just gazing at Noah in complete awe that we had made this perfect little boy. The following morning my phone rang. It was the epilepsy nurse, she just wanted to check how the first night had gone. Asked about how much sleep Id gotten and to see if I’d taken the Clobazam. I admitted I hadn’t, mainly because it was Noahs first night at home, I was nervous and wanted my wits about me. She gave me a bit of a slapped wrist for not taking it, although she understood my reasons. She pointed out that I needed to be well to look after Noah and so getting myself straight needed to be a priority. Then she gave me the news that she had booked me into the clinic for the Monday (it was Wednesday). She wanted to give me a few days to find my feet but for me to be seen sooner rather than later to adjust my medication. I really do love my team, they are so on the ball and worth their weight in gold.
The next blog will cover that appointment and my journey into early motherhood with epilepsy and the joys and problems we will face as a new parents adjusting to life with the epilepsy. Right now I am just thankful for our precious boy.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.