Tuesday, 17 January 2012
Told in 2011
Our baby being diagnosed with spina bifida & lesion being spade wide open from the 11th 12th disc down to the bottom of the coxis this is a really large opening, and discussed on the 10th jan that theres not enough skin for this to be closed, so baby wont need an operation as soon as he/she's born.
Our babys brain part of the left hand 1/4 back side is missing we where told this on the 20th Dec 2011 going back on the 10th jan to find out more fluid has now gone over to the right hand side now the name of this rare cyst Porencephalic (please click on the name to find out more)
Quote from our hospital letter
"I explained to you that because of the brain problem maybe that baby's born and doesn't establish normal or regular breathing. It is therefore possible that baby may pass away and die relatively soon after delivery. If this was the case we would not wish to admit baby to special care baby unit and would rather that we helped you care for baby on the delivery suite"
We decided to plan & organise a funeral last week, Friday I just couldn't stop crying at all hubby rang work and stayed with me, we talked, hugged, cried, held hands sat tickling my tummy, it was a really hard day to talk about organising a funeral with baby kicking ?? We made an appointment after speaking to some funeral directors most who where really lovely I have to say, mind you one does stick in my mind and after telling him about baby he presumed and said "So your having a termination then" It was hard enough to pick up the phone and make the call never mind being spoken to like this !!!!!!!!!!! We didnt speak very long after this x
So 2pm last Friday we went and picked a coffin a beautiful white one with silver handles Walkers in Carlisle where So lovely and very helpful, If baby does die we know that every things in place picked and done so theres precious time spent with hubby, girls & baby altogether and no need to then be here there and everywhere & not being able to think straight either, at least we have that time altogether talked about all our different wishes and planned with love for our baby ~~ also coming to terms with what would be the worst day of our lives.
We still have HOPE, POSITIVITY, and SO MUCH LOVE the 12th March will be our baby's birthday (section date) we have decided on that day to celebrate our baby's birthday too as this might be the only one we have x
thank you to everyone who sends us emails (firstname.lastname@example.org) messages on facebook & twitter, text messages, cards sent with support all this helps us get through every day xxxxxxxxxxxxxxxx
#BabyBobbinsDay I hope you can virtually join in on twitter & facebook page on the 12th March raising awareness of spina bifida & why we should take FOLIC ACID 3 months before pregnancy http://www.shinecharity.org.uk/ @shineukcharity xxxxxxxxxxx
Love Shellybobbins xxxxxxxxxxxxxxxxxxxxxxx
Wednesday, 4 January 2012
Searching google & you tube the other day I came across this amazing and very inspiring family ! I had to share this with you about spina bifida.
You may already know our baby will soon be born with spina bifida and finding inspiring stories like this are a fabulous uplift & real boost of positivity