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 (shellybobbins.2010@yahoo.co.uk) 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
Oh Shelley - there are no words. You are an amazing lady and family. Sending you so much love. xxxxx
ReplyDeleteI will be tweeting on #BabyBobbinsDay. Loads of love to you all x
ReplyDeleteAww hunny, not sure what to say but will be thinking of you all, enjoy the time you get with your precious baby.
ReplyDeleteSending lots of love. Such a cutie.
ReplyDelete@shoponyourdoors
I cannot begin to imagine what you are going through but you are an amazing lady and my thoughts will be with you on 12th March (DD's birthday too) and sending you as many positive vibes as you would wish for. xxx
ReplyDelete@Ellieforrest52 here.
ReplyDeleteI read this with a heavy heart as you are me, but one year later. It's horrible having your baby kick, knowing you are planning their funeral. We had 70% chance with Ellie but her lungs were so small from the kidney disease and having no fluid that she couldn't cope.
My blog is www.Ellieandmi.blogspot.com and if you go right to the beginning, you'll see I went through all the same things, though with a different disease.
Your positivity is amazing and it will get you through. I know starting 4Ellie-phant has helped me a lot this past year and I am hoping it will make me smile a bit more on her birthday next month. Keep strong and know that I am thinking of you always, though I don't know you!
Love to you and baby bobbins x x x
Oh sweeties I am so so sorry to hear that. Sending you and yours all the love I possibly can xx
ReplyDeleteSo sad to hear this news. I will be keeping everything crossed that you have as much time with lovely BabyBobbins as possible. Lots of love to you and your family xx
ReplyDeleteLots of love for a great family x
ReplyDeleteI cannot begin to imagine the emotions you and your family are having.I do admire your forward planning so you will be able to share every precious moment with your baby. May you all find the strength to get you through this.
ReplyDeleteOh Shelly I am so sorry, what terrible news and an awful situation to be in. You are a truly amazing woman and such an inspiration. Much love Dee
ReplyDeleteYou and babybobbins are in my thoughts every day. I know you are making each day count. You are a blessing to so many other mind in a similar situation and I'm so proud of you carrying to term. X
ReplyDeleteThoughts and prayers are with you all and i hope your able to spend as much time as possible with your beautiful baby bobbins x x
ReplyDeleteI will do my best to to be around on twitter on the 12th march #BabyBobbinsDay to help you raise awareness about folic acid and spina bifida x your a true inspiration with all you are going through to raise all this awareness thankyou x
@missdaisy32
Shelly, the same happen to me and I gave birth naturally after 20 hours . Cherish the time you have with your baby - I held my baby and kept her with me as long as possible
ReplyDeleteI can't even imagine what you are going through. I have huge admiration for your attitude and send love to you and your family. xxx
ReplyDeleteYou are such an amazing lady. How you find all this strength and positivity at what must be such a sad and difficult time for you and your family is truly inspiring.
ReplyDeleteI am sure Baby Bobbins can feel it all too and will always be super proud of his/her Mummy and Daddy where ever he/she may be. x
You are amazing Shelly.....Baby Bobbins is very lucky ♥♥ x
ReplyDeleteOh Shelley. I can't begin to imagine what you're going through at the moment. All I can do is send massive hugs to you all. My niece passed away 18 months ago, aged just 9 days. I never got to meet her as she was born in Spain. Treasure every moment you have with Baby Bobbins xxxxxxxx
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