Door buzzers and hand gel!

I can't sleep.
Starting this blog has unleashed my emotions and basically now I'm an emotional wreck! The messages of support I have received from my friends has been so warming and encouraging that I'm fired up to carry on with little E's story.

Little O really cried when she read the blog, I didn't want the girls to be upset. It seems like a distant memory to them and I'm glad of that. I'm only remembering to help me forget! it's funny how at the time she was so strong but now looking back she finds it so upsetting. Maybe she had forgotten or maybe she never believed little E was that poorly?
The doctors certainly thought she was, they came to see us early the next morning and asked if we wanted a blessing, they said she had nearly gone so many times during that first night. To start with I said big D and I were not very religious but then she suggested we just meet a church of England minister and have a chat. What a lovely women- you don't need to believe in god to believe in love.

I can't remember what time best friends D and K arrived but I know that they hugged me and big D so tightly I suddenly gained some lost strength. D had walked out on her sons football match and K had left her hubby to cook dinner for 20 family members - true buddies!  by this time everyone knew: Big D and I were getting endless texts and phone calls with love and support. I have never experienced anything like it, I felt embraced and overwhelmed by my family and friends.
 There we all were friends, family,favourite midwife and amazing nurse J, even tiny niece and nephew came, squashed in little E's room having a blessing for our dying baby.
My niece little R said to me awww look at her little ears she is beautiful!
I had forgotten what her ears were like, where her head was so swollen her ears were squashed and sunken like little cabbage patch kid ears or cauliflowers!! 8 months on her ears are fine and so is her hearing ( one less thing to worry about!!)  Bless her, she didn't see the wires or the big ventilator breathing for little E, she just saw a little baby. Everyone else in that room saw a very poorly, poorly baby.

  Even though they told me she wasn't in pain, they were wrong- She was in pain, I was adamant. I didn't want her to suffer, I wanted her to go if she was suffering, she was on morphine, and a machine was breathing for her. I kept muttering maybe she needs to just go, I don't want her to live like this. She didn't look real, and I didn't feel like her mummy, I was grieving more for the baby that had been taken from inside of me, than my actual dying daughter. I think some days I still have that grief but luckily it dispels quickly when little E gives me a smile.
Big D always believed she was going to live, if he ever doubted he never told me, he always said she is strong she is gonna make it. Everyone says little E and big D are two peas in a pod maybe she has his inner strength, could it be the red hair connection? a secret ginger strength!! thats ginger not ninja!!

We had no rules, anyone could visit and the girls were free to walk the long corridor from my room to little E's. (possibly it turned into a scene from Casualty for them, they were so responsible and independent , my girls have always been great in a crisis.)
 Every door had a buzzer, every entrance hand gel, the girls were very thorough. I only used a wheelchair for 2 days, most of the time I honestly didn't feel the pain.
Service finished, big D took me back to my room for a lie down as my feet had swollen to the size of shreks! Then doctor came to give me medication to stop my milk.(no milk to feed my baby, no baby) It all felt very final.
People came in and out of my room that day, bringing me food, gifts, hugs, support. Maybe it was love that kept her going. I know that's what big D believes.
We only found out 3 months later at Great Ormond Street that her diaphragm was really high up squashing her lungs and her diaphragm was not moving so how she survived I don't know she was being squashed from the inside.
The diaphragm placation ( pulling it down and stitching it in place) was done on the 1/8/11 , 7 hours in theatre but it improved her chances considerably.
Those 2 days seemed to last forever, but the next day a specialist Geneticist came down from Great Ormond Street and that was a meeting I will never forget......