8 months ago...

I'm not going to google "how to blog" and read pages on pages of super tips and writing skills, I'm just going do this, how hard can it be?
I don't want to impress anyone I just want to tell my story; my real life story. I hope that by writing it I may educate people(slightly patronising!) and inform people and hopefully meet other people with similar stories.

I have got an amazing family and gorgeous friends but I am the mum to Little E and for that role I am very alone.

8 months ago I had a baby girl, I already have 3 older daughters (that's a whole different blog, and involves alot of hormones and hair straighteners!!!)  She decided to come 5 weeks early and when she was delivered there was not the normal delivery suite atmosphere; midwives happily bundling her up and bringing her over to me for that so special first cuddle (just like I had been watching on channel 4's One born Every minute for my entire pregnancy, always sobbing and rubbling my belly with excitement) and telling dad to get the camera ready.
 There was just silence, Big D and I were invisible to the doctors and nurses who all rushed around this little "thing" with bright red hair, then they whisked her away. The doctor, Rachel (I will never  forget her) said to us "Your baby is very sick, but I have managed to get her breathing, we will do everything we can" and then she was gone, Little E was gone and we were left in a cold white recovery room with no baby.

I am always hideously big whilst pregnant,cant stop eating pick and mix sweets and olives!! but this pregnancy felt different, I was super huge at 5 months it was painful to walk and I had a feeling things were not quite right but everyone kept reassuring me and I started to think it was just my hormones!
 I moaned the entire pregnancy, poor big D! All the scans were fine though, the girls would sing and rub my bump, the dog would sleep on it! The baby moved and kicked me very hard! I couldn't sleep and wee'd all the time!! All sounds pretty normal!
My Little E is not "normal" though. The first description of my 1 hour old baby daughter was she was poorly, she wouldn't live for 24hours. The doctor said he thought she had Edwards syndrome and babies with this didn't survive then he listed all the things wrong with her, it felt like a never ending list and I can only remember a few words: short limbs, underdeveloped lungs, deformed body,rocker bottom feet,stiff joints, swollen head......I'm sure the word, mentally retarded was in there too although that could have been later on, it is all a blur to me. I'm good at blocking out painful things from my memory but the image of Dr L talking to us whilst I lay on a recovery trolley and Big D was in his scrubs sat next to me gripping my hand tightly still wont fade. I don't think I cried until he said you must come and see her urgently, so still unable to move from the c section they wheeled me up on the trolley/bed to see her, Little E, swollen, bruised,misshapen, wires everywhere, beeping noises(later on I learnt the beeps were her heart beat and the alarms were if her sats dropped, these alarms quickly become a headache to big D and I, constantly hearing the alarm in our ear day after day, watching the sats monitor, listening to her heart beat) a large tube in her mouth breathing for her (I now know is a ventilator) Our little baby daughter,she looked like she had been scrunched up in a tight ball,  All we could do was put our hands inside the incubator and stroke her puffy skin, the tears came fast then.

the first time we saw her

My god this is harder to write down than I imagined, I thought it would help but I just want to go and get Little E for a cuddle and have a good cry. I have got Epic carers in giving me respite, they come once a week and it allows me "me"time before the girls come home from school and normal family madness commences!! I'm so grateful for their support but its another thing that had to be fought for .If the doctors said they think Little E may live then we wouldn't be allowed a carer but if they said there is a chance she could die we would get a carer!!! Bureaucracy!!! It would have helped if they had just looked into a crystal ball!! durrr!!

Because the syndrome is so rare (Escobar syndrome) they don't know enough about it, so it doesn't appear on any lists which means it cant be ticked off by someone behind a desk! and they cant statistically measure the death rate or have the quality of life meeting (I'm sure they do have those meetings still behind closed doors) Sometimes they say she is so poorly we need the hospice other times they say she is not poorly enough for certain treatment. I suppose though I'm not so different. Some days all I can see is her oxygen, see her breathing hard,her NG tube and her funny little feet and hands. Other days all I see is a cheeky 8 month old baby making gurgling noises and sitting in her high chair sucking on a chocolate finger (one chocolate finger for little E, one for mummy!)


That first day of Little E's life was pretty horrific, that's not a normal thing for a mother to say, I felt numb (the morphine probably didn't help) I was crying constantly, I think big D was just trying to be strong for me (we quickly formed a pattern when I was weak, he was strong and vice versa we coped like this, it was only on a few occasions that we both hit rock bottom and that's when it was hard to climb back up, very hard.) He was the one texting and calling people, and then my mum (never been so pleased to see her) and dad arrived with the girls. Their three flushed faces from the unusual heat in the neonatal side room smiling at me, hugging me. Little M gave me a baby girl balloon. Little O had a teddy. They stood and peered through the plastic incubator at their baby sister. What was really going through their heads they never told me, they were so amazingly strong, positive. Its something that no child should have to experience, from that point on the hospital became their second home for 5 months, the small white room with little E in became our living room.
Drained and uncomfortable they took me to my room-a private room-on the labour ward. Big D's mum visited but I dont remember much else that day.  Big D slept in a double bed and I slept in a hospital bed in the same big empty room, we didn't sleep, we cried, loudly and we never said but I know we both prayed. Every now and then I would hear a baby crying. As the anaesthetic wore off and I was drifting in and out of sleep, drugged up to my eyeballs,  I felt her kick inside of me, I held my bump but she was gone.
Fighting for her life, she made it through the first night.

8 months ago I thought I was going to be a mummy again, instead I became: carer, advocate, fighter, physio, O.T and mummy! I am great at multitasking but that pushes me!! I'm inside a giant disabled-child bubble!! Its a whole different world, my days of baby clubs, shopping and housework (dull but true!) are now filled with hospital appointments, physio,O.T appointments,checking medication, checking the oxygen, watching her colour, tube feeding milk, visits from the community nurses, hospice respite. Its tougher yet more rewarding, its a place where you don't take things for granted and you try and appreciate every second.
 Hmmm that last bit is not quite true, sometimes (most of the time) I'm too tired to appreciate things, big D and I walk about in an almost robotic trance! I still take loads for granted and I find myself snapping at everyone and moaning about how untidy the girls bedrooms are (why???)
when we first brought Little E home after she spent her first 5 months of life in hospital (last 2 at Great Ormond street) Little H or little O or little M would moan to me and I used to scream saying look how lucky you are, clever, beautiful and healthy get over it!!! but I have calmed down a bit now, because normal life has to continue around little E, school, work, debt, coughs, colds, friendship drama, food shopping, arguments, watching TV,walking the dog.....life!

There is one thing I appreciate so much that it brings tears to my eyes and that is my beautiful red hair,big blue eyed, smiley,cheeky little E.
The carer is going now and its probably a good place to stop for today..........