We had a lovely Christmas with 13 of us on Christmas day for dinner at our house. We really value our family time and enjoyed spending such a fun Christmas with Pat.  We managed our grief fairly well although we missed Sadie as always.

After all the energy of Christmas Drew and I feel wiped out and have hibernated a little - just going for walks and playing with Pat.  We have found the sadness heavy in our hearts.  We are well used to this now and know how to handle this but it often means letting people down or missing out on some fun stuff, but we know when we need to listen to our emotions.

Sadie's Birthday is tomorrow.  Sadie was born by planned C Section because she was in breach position.  The night before the operation, I was filled with emotion and I had a deep fear that left me in tears as I tried to relax in readiness for our new arrival. I couldn't explain it but I just had a bad feeling and in fact believed something terrible was going to happen.  I couldn't fathom this feeling and so I decided that I must prepare for death in childbirth - I showed Drew around the carefully planned nursery and talked to him about what to do and say to our daughter if I died.  It sounds terribly morbid, but I just couldn't explain it.  There was no reason to believe something bad would happen and I had been scanned many times due to excess fluid and to breach baby, but all the signs were fine really.  Although they did tell us Sadie was likely to be small. There was absolutely nothing that prepared us for what happened.

Sadie was born at around 10am on Wednesday 30th December.  The cesarean went well but Sadie was not breathing when she was born.  She was resuscitated and passed into Drew's arms looking tiny and blue.  They told us she weighed only 4lb8 and this really worried me. She would not latch on for a feed and because I was so filled up with pain relief I was pretty numb and struggled.  Sadie didn't cry noisily like most babies.  Not having been around newborns much I was unsure what to think.  I felt a deep fear but noone was telling us anything was wrong, so we just fumbled along.  Later Drew told me that he too felt worried when he saw Sadie.

Sadie was very tiny and very quiet.  The clothes I had brought were far too big and she was loaned so premmie baby clothes from neonatal. At 2pm Sadie's grandparents arrived to visit her, but she was growing very cold and the doctors told us they needed her to go to the neonatal unit to be placed in an incubator to regain her body temperature. She barely had any fat on her at all and had lots of downy hair called lanugo - very similar to a premature baby.  I was heart broken and couldn't be with her as I was in post-op recovery.  All around me the other mummies were getting acquainted with their babies and I just felt lost and sad.

I was allowed to visit Sadie that evening in the neonatal unit and she looked so fragile.  It was hard to know what to do and I felt like I couldn't be a proper mummy to her. A nasal gastric tube was passed into Sadie's tummy so that she could be tube fed and I watched and learned. I was shown how to gently change her nappy in her incubator and just doing some small tasks really helped.

I lay in bed on the maternity ward and felt filled with sadness that night. A nurse brought me some beautiful pictures of Sadie that she took for me to look at over night. This helped and I spent the night gazing at her photos.

I woke up with new resolve and was sat on the edge of bed first thing requesting to be decatheterised so that I could go to be with Sadie straight away.  I felt better now that the morphine was out of my system and when I spoke to Drew before visiting time we were both excited at the day ahead.  Drew arrived to find me bouncing around pumping breast milk and getting Sadie dressed. I had set up camp by Sadie's incubator and was really getting into the wing of looking after her in this way.  Drew arrived with champagne and flowers and I started to show him how I'd been able to dress Sadie and we sat and cuddled her now.  I also popped back to the maternity ward and was enjoying chatting to the other new mummies and feeling part of this new world of parenting!

At 10am, as Drew and I sat cuddling our little tiny bundle carefully minding her nasal tube, the doctors and nurses pulled a screen around us and quietly but clearly explained to us that they believed that Sadie had a condition called Edward's syndrome and that she would die very soon.  Within a few days.  Shock and disbelief set in.  I remember very little of that day.  New Years Eve 2009.  Despair.  Being placed in a separate private room where Drew and I would be able to catch sleep whilst we stayed with our baby until she died.  There is no way of explaining what this all felt like and the conversations and anguish.  Impossible.  Googling for facts.  Looking for hope.  Phones calls to friends and family.  Visitors.  Tears.  Pain.  Cuddles. Listening to fireworks and celebration all around as our world stopped turning.

Drew and I held on to each other.  Almost telepathic in our approach.

There is so much more I could say.  Most of it is held here in the pages of my blog and much much more is contained in my heart. Perhaps ready to share one day.  This new world that was created for our family that day sounds painful and ugly but in reality it was beautiful and loving and Sadie brought us so much.  The pride we felt when she beat every episode of apnea and shook off jaundice and a bug.  She came close to death many many times before we brought her home.  So when we did bring her home we knew we were very lucky.

Sadie brought us 8 and a half months of joy and love.  She would gaze into your eyes and stare deeply.  She was beautiful, brave beyond belief and strong as an ox.  She enjoyed her world and she loved her family.  Sadie experienced so much in her time with us and she changed our worlds forever.

One of my favourite memories of Sadie was when she was around 6 months old.  Sadie was having an unexplained bout of pain and sometimes bouncing helped her - she loved bouncing.  So we flicked on the radio and danced to 'Saturday Night' by Wigfield.  She grinned and laughed and we had such fun together.  I treasure this memory.  A classic Sadie moment.  Tomorrow should be filled with many more moments like that and it hurts more than I can explain to know that it will never be the case. Instead, we will find our way through the day and continue to make the most of our lives and to take the joy and fun bits where we can.

I continue to be amazed and delighted by Sadie. She is a wonderful inspiration and I am so proud of her and so glad she fought to be with us 3 years ago.