All about Our Gorgeous BabyBobbins who we love SO much

                      BabyBobbins what a cutie this was taken on the 10th 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 (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

Spencer Tomc - Spina Bifida INSPIRING !

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


http://stemcellschina.com/blog/SpencerT/page/2/

15th December Babybobbins has MRI scan & results from the 20th December

Our Christmas news after having the MRI scan at Newcastle RVI wasn't good, I had the scan on the 15th December & we had already been given the 20th December to go back for results and another ultra sound scan, so last week Christmas shopping scans, wrapping gifts, food shopping all had to be done and of course keeping positive too !

   What is an MRI scan ~~~~> http://www.patient.co.uk/health/MRI-Scan.htm

On the 20th December we where given our results and baby also has "Porencephalic" cyst/tumour and on the scan was a black area at the 1/4 back left hand side of baby's brain we found out that this is missing and will not grow back, we now have to deal with the fact of baby being mentally disabled too on top of the Spina Bifida & possible downs & possible 2 Chromosomes, We have also been told that the lesion on baby's back (spina bifida) is very large & if it cant be closed up baby has 10% survival rate due to it getting infected.

Sounds horrendous doesn't it ! never in a millions years did I ever think this was going to happen, Ive been given determination, positivity & strengh this is how I can manage to get on with it we have been given this opportunity to be pregnant and to love & care for our baby no matter what happens in 2012 but deap down I know in my heart of hearts baby will come home !

I'm now enjoying being pregnant and feeling baby move about, its so amazing hubby & girls to sit with there hands on my tummy & talk to baby and then watch baby respond with movements its incredible.

This 3D scan was taken on the 20th December I wanted to share it with you, babybobbins seems to be camera shy and only see one part of baby's face ! babybobbins likes sucking his/her thumb !

Alot of people have been sending such amazing comments & support over twitter, facebook, emails, text messages, even sending cards of support & letters this has kept us so positive, thank you so very much for all you do, doesn't matter how small, knowing your there and supporting us with your words, prayers lighting candles or just asking how we are, this really means the world to us xxx



With Love Bobbins Family xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

http://en.wikipedia.org/wiki/Porencephaly more information on this condition can be found by clicking on this link

http://en.wikipedia.org/wiki/Spina_bifida more information on spina bifida can be found by clicking this link

Babybobbins now needs MRI scan

We had a very busy day yesterday at the RVI hospital Newcastle, going back in 2 weeks to have MRI scan on baby amazing what they can do while your pregnant.

Specialist now doesn't know about babys head fluid, as brain tissue forming normally, so now will be seeing a professor & talking to him about MRI scan results.

Also hospital have had to check my knee & elbow replacements & what they contain lucky it's titanium and not steel which if it was steel would cause a magnet & machine would rip them out (good job I mentioned I had replacements) !!!!!! Lol arm less & leg less lol !!!!

Also had a chat with the anesthetist about me being allergic to anesthetic, I asked while we where there about any research progects going on too, so now on one of those, anything to help is always good xxx

PS baby looked so gorgeous & wriggled for camera too ;0)) xxxx

Love Shellybobbins xxxx

Our gorgeous baby has Spina Bifida & risk of trisomy13, downs syndrome, edwards syndrome.

Ive been wanting to blog for ages, but when you read this you'll know why I haven't ................................

Being just 40 in September meant I'm at high risk of having a baby with downs, we decided not to have the test as it could cause miscarriage and its nearly a year since that happened, So both hubby & I said no, its not something we wanted to go through ever again. The hospital said we can send you to the RVI at Newcastle to check baby's heart & make sure everythings ok just by a scan, so at 16 weeks we agreed and saw a really lovely heart specialist ----- you'll be pleased to know babybobbins heart is fabulous, PHEW ! and completely relaxed such a weight of our minds & so happy baby's heart is ok, we even asked them do you need to see us again ?? NOOOOoooo just carry on with your scans as normal at Whitehaven hospital we are happy not to see you again as everything looks fine.

(researched all about downs so felt happy knowing we had looked into everything)

The morning of our 20 weeks scan bit of rush, but hubby amazing as ever & even had our little snack bag organised too plus my water bottle !! off we go laughing & joking as we do, thinking of names !! we where really excited as 20 weeks scan you can also find out the sex of baby too !!

Into the scan room all smiles & a lovely lady that was very chatty & then suddenly stopped being chatty, my stomach just turned I held hubby's hand really tight, we knew something was seriously wrong, I kept calm and asked what was wrong, she said I need to get a second person to have alook, everything looked ok baby was kicking & moving about I could see the heart beat !! then she said its serious and baby has SPINA BIFIDA, we need you to wait and see a doctor now, I just burst into tears, what the hell was spina bifida !! all I could think about was I not research it I knew it had something to do with the spina but that's it ! Hubby face tears and held me to tight.

We waited to see the doctor, he explained what spina bifida was and said we have to see a specialist now back at the RVI to see how serious it is, I did ask for a leaflet which had websites on so we could google when we got back, the doctor said if you google about it you will scare yourselves ! (nice) they rang the RVI while we waited and managed to get us seen within a couple of days I just wanted to go there and then !! 11/11/11 at 11O'clock wont forget that date in a hurry.

Telling our girls was heart breaking we had lots of questions so decided to make a list of everything we could think of, In the couple of days we had to wait hubby took the time off work, all we could do was support each other & our girls this was & still is the only thing that matters, we had afew of people, family, friends asking horrendous questions & saying the most stupid things

Maybe a miscarriage would be a god send ??
How will you cope if you need another knee, elbow, etc ??
How will you lift baby when its older ??
What quality of will it have ??
Have you thought this through ??
Your disabled how will you manage ??

And then our daughter comes home from school and says shes googled spina bifida today and seen a baby with half a head, we are doing all about "Can you play god" in religious studies or do you terminate a disabled baby.  This was far to much for her, didn't even know she was doing this either, we rang the school and put them in the picture --- they have been amazing & very supporting too !!

11/11/11 at the RVI at 11 O'clock well just after my 2mins. Our specialist chatted with us first before the scan we said we just need to know how serious this is, (also had a medical student with him & asked if it was OK, of course as everyone has to learn it is 1 in every 1000)

What we know :-
1. Baby has spina bifida 11th & 12 vertebrae & will need an operation soon after baby's born to close everything up due to infection, with it being high up baby will be paralysed from the chest down. http://www.shinecharity.org.uk/spina-bifida
2. Baby may still have downs but having refused and testing due to risk of miscarriage we wont know until baby's born. http://www.downs-syndrome.org.uk/
3. Baby also has fluid on the back of the brain & may have mild brain damage & also may have to have a shunt put in, this also could then lead to further brain damage if infection or complications happen.
4. Baby has also a 2% risk of having chromosome 18 Edward syndrome http://en.wikipedia.org/wiki/Edwards_syndrome this is fatal.
5. Baby has also a 2% risk of having chromosome 13 Patau syndrome http://www.livingwithtrisomy13.org/ this is also fatal.

knowing what we know we will always try and stay very positive everyday & do everything we can as a family.

Love Bobbins Family xxxxxxxxxxxxxxx

Shellybobbins has fabulous customers !

Amazing pictures to share with you, that make me smile every day, its fabulous when my lovely customers send in these ! I love to open my emails in the morning ! thank you so much for always supporting a small business xxxx

Love Shellybobbins

Shellybobbins now has a Blog Shop for Christmas

Hello just thought id let you know ive now got a blog shop you see the tab at the top of the page just click and this will take you to it,  I will be adding alot more with the run up to christmas, also please keep in mind that personalised gifts & mine are all handmade, do take alot longer to make, so if you would like something really special made for christmas then click on contacts and send me an email im always happy to help

Ho Ho Ho ;0)

Love Shellybobbins xxxx