CDH Tax Disc

cdh-tax-disc

Replace your now redundant tax disc with something useful :)

Click here cdh disc to view and print yours

Fundraising for Blake

We are very busy busy at the moment!

We have a few fundraising events on the go for two charities that are very special to us, CDH UK – who continue to support us and Nottingham Hospitals Charity.

A friend of mine is hosting a shopping and pamper evening on the 15th November, see details here

We also have friends running for Blake in the Bath half marathon in March.

Rocket Print and Promotions kindly printed us 1000 quiz sheets for free which we and many more are selling for a donation of a pound, very excited to see how much we can raise from these!

And we are having a big party on the 7th December, see pic! also more details here We have some excellent raffle prizes so far including: A pizza making party for 8 at Pizza ExpressAfternoon tea at The Cakehole Barrowby, Cordial set from Belvoir fruit farm, Paul Mitchell shampoo/conditioner from Baileys Hairdressers, Sweets from the Holroyd’s Traditional Sweet Shop, Fish and Chips for 2 from Relax Fish Bar, Party lashes or Spray tan from Donna Simpson and lots more in the pipeline!

We would like to thank everyone who is helping us create a legacy for our Blake, it is so so important to us that some good comes out of his short life, thank you! X

 

prince-princess-party

Blake’s Funeral

We had a service for Blake on the 10th July, we kept it small and it was a lovely day, very peaceful and special :)

I thought I would make a record of it on here for people that couldn’t make it…

MUSIC

FOOTPRINTS

These are my footprints,
so perfect and so small.
These tiny footprints,
never touched the ground at all.

Not one tiny footprint,
for now I have my wings.
These tiny footprints were meant
for other things.

You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angels’ tears,
of joy and not from pain.

You will see my tiny footprints,
in each butterflies’ lazy dance.
I’ll let you know I’m with you,
if you give me just a chance.

You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.

Most of all, these tiny footprints,
are found in Mummy’s and Daddy’s heart,
cause even though I’m gone now,
we’ll never truly part.

BLAKE’S STORY

After over 2 years of joking that Steve’s bits were broken we were utterly shocked to find ourselves pregnant! So shocked that we had to go out and buy a third test, the most expensive one in the shop in case the cheapy ones from Morrisons were wrong.

We were over the moon. We had our 12 week scan and got a picture of him giving us a little wave!
It was at the later scan at 20 weeks when our lives fell apart. The sonographer noticed that something was wrong; she adopted a sad face and said she was so very very sorry. Our little boy’s insides were jumbled up, his heart on the wrong side, his stomach pushing it over… very little room for his lungs to develop; he had a 50/50 chance they said.

We got to see lots more of our little boy. At 28 weeks we got a sneaky peek at him in 3D, a grumpy little face with a squishy button nose looked back at us.

“He looks well pissed off! Just like me “ laughed daddy.

We took the kids to a private 3D scan so they could meet him too, any hopes of him taking after his big sister Holly and pouting at the camera for us were soon diminished when he spent the whole time bent in two, with arms and legs flailing about in front of him and chomping on the umbilical cord! Travis thought it was hilarious that Blake could kick himself in the head.

He looked so perfect, healthy and safe in there, it was so difficult to believe that he might not make it on the outside, all we could do is hope.

Our last scan was at 36 weeks, we saw him again in 3D, the consultant tried to take a picture of him, again Blake was having none of it turning his head away every time the scanner was on him. He was a little sod!

The following week was spent in hospital after his waters started leaking. Blake needed monitoring every 4 hours and he quickly gained a reputation for being the naughtiest baby on the ward! The midwives needed just 20 minutes of continuous heartbeat, no chance! When they would eventually find him he would clear off again, you could almost imagine him sticking his fingers up at them and telling them to leave him alone! Definitely his daddy’s boy.

The following week we finally got to meet our little one, a couple of gasps in our arms and he was gone and our hearts were broken. It wasn’t supposed to happen like that. He was beautiful.

MUSIC

LULLABEE

Lullabee, lullabee
Honey bees in the tree
Rest your wings ’til the morning light
Lullabee, lullabee
Honey bees in the tree
Your honey is safe tonight

Just dream to the tune I am singing
Time to stop all that buzzing and stinging-ouch

Lullabee, lullabee
Honey bees in the tree
All I want is a smackerel or two…(or three)

Dont’ sleep lightly, sleep very tightly
Happy slumbers to you

– Winnie the Pooh

MUSIC

BALLOON RELEASE

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P1110654

P1110657

SOME MORE PHOTOS

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P1110662

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Thank you

Myself and Steve would like to say thank you for all of your kinds messages, for cards and flowers and especially for everyone who donated to Blake’s charity page, we are completely overwhelmed at the amount raised so far, I though I would set a challenge of a thousand pounds target, I can’t believe it took less than 24 hours to get there! We are so humbled that Blake’s little life has touched so many people. We intend to carry on fundraising for CDH UK and Nottingham University Hospital Charity, one to say thank you for every thing they did and two, so that some good comes out of Blake’s short time with us. We have an event planned near Christmas and a few ideas on the go… nothing scary like jumping out of a plane though. Sod that.

At the moment I am focusing on giving Blake a special send off, arranging your child’s funeral is not something any mother should have to do… it is heartbreaking :( We miss him very much. It is shit.

Baby Blake

Baby Blake was born at 10.14pm on Friday 21st June, he weighed 5lb 12oz and was absolutely bloody beautiful, he looked perfect and was the image of Travis when he was born.

All was well until the last few minutes of delivery when his heart rate suddenly dropped, the doctors tried so so hard to help him but his heart rate wouldn’t return, we had the whole neonatal team in our room. We heard one of them saying ‘what a beautiful baby’ and they were all devastated that they couldn’t save him.

We are beyond beyond gutted as you can imagine, we didn’t expect him to go so soon or because of his heart, his heart was always so strong, life is so cruel.

Thank you for following his journey and for helping us to stay positive throughout what has been the most difficult time, we will never forget our dear sweet boy.

36 weeks…

Another update! I am rubbish at blogging so will backtrack a couple of weeks…

34 weeks… We decided to go for the amnio reduction as fluid levels had reached 41cm (normal around 12) they were hoping to drain off 1500mls of fluid via a big syringe, as it happened it turned out to be a complete fail :( It wasn’t our usual doc and this one seemed very nervous like she didn’t want to do it and was fannying around no end, numbing up 2 different areas whilst deciding where to put the needle in… eventually choosing the area which hadn’t yet numbed. The end result was me having my very first panic attack at 350mls! Not great when you have a massive needle a few inches from your unborn baby… so I made her take it out. If we were going to find a positive in all this then it would be that 10 mins later a bus drove past and its tyre burst! Sounded like a bomb going off… rather glad I didn’t have a massive needle in my gut at that moment, almost hit the bloody ceiling!

I had to stay in overnight for monitoring and to make sure I didn’t go into labour, every few hours the midwives came round to attach me to their machine to check baby’s heartbeat and that I wasn’t having contractions… Dear Master Donnison soon gained a reputation for being a little sod!! 20 minutes of continuous heartbeat was all they asked for… no chance! He kept clearing off every time they found him, just wouldn’t stay still… and then when we thought we were doing well he would get the sodding hiccups! which did sound hilarious but it was louder than the heartbeat so completely messed the trace up!

Since we are now at 36 weeks you can safely presume I didn’t go into labour! We had a scan yesterday… fluid is now at 46cm, the consultant said the highest he has ever seen, hmm joy. This doesn’t affect baby just makes me very very uncomfortable… especially now that his estimated weight is at 6lbs 4oz!  We worked out that I have the equivalent of a 3l party pack of cider and 3 bags of sugar resting on my bladder. Ouch! Have yet to reach for the Tenna ladies so all is well in that department… for now!

You may have noticed that time is cracking on and the end is nigh… we have an induction date, if he hasn’t made a sudden arrival beforehand then I will be induced on the 1st July (subject to a NICU cot being available) … 2 weeks on Monday…. AAAAAAAGGGGGGHHHHH!!!

 

Bit of an update…

Lots of people have been asking how things are going etc and I realised that I haven’t done an update for sometime!

We have since spoken with a genetic councillor, she couldn’t really add to the information that was given in the leaflet thingy (that I posted last time) as obviously no one knows the effects of the Trisomy until he is born, but she is a lovely lady who made me feel a bit better about everything… and if I am worried about anything or just want a chat/rant/whatever then I can just ring her…

We also met with one of the Neonatal consultants (who will look after him when he is born) and they will do all they can as normal for the CDH, so that is good.

Have spoken to CDH UK, they have had families that have had babies survive CDH and mosaic trisomy (she wasn’t sure which trisomy mind but is checking)

We have also had a growth scan and the great news is *touch wood* he is growing as normal and is pretty much average size – one of the major symptoms of the trisomy is crap growth, and also heart problems, which again *touch wood* he hasn’t got… Clinging to the positives here, so I don’t go insane!!

I also keep getting asked how much longer we have till he is here – possibly because I am the size of a house due to waaaay too much amniotic fluid (very common due to the cdh etc) It is massively uncomfortable and can cause premature labour… as can getting it drained… ugh! what to do? Will poss leave it another week till we are 34 wks and he would stand a better chance if he were to arrive, and hope I don’t burst in the meantime!

So… if he were to stay put and I get induced a week early then only 6 weeks to go… eek!

 

When life hasn’t shit on you enough…

Just a quick post, not feeling up to talking about it, yesterday the consultant called with the rest of the amnio results (the bit that tests for all those niggly really rare things) Baby has ‘Mosaic Trisomy 9′.

Trisomy 9 is lethal and involves an extra #9 chromosome in each cell, Mosaic Trisomy 9 is the same but only affects some cells… how many/which cells we won’t know until he is born, he could be pretty normal or he could be very disabled, we will be meeting with the genetic counsellors next week to speak to them, also at some point the surgeon and doctors to see if they will still operate on the CDH… The consultant didn’t know as neither he nor his colleagues have encountered Trisomy 9 before.

To rub salt in the wounds the CDH is a separate entity and not related to the Trisomy.

You can read more information about it here.  xxx

Awkward little bugger!

Yesterday I took the kids to Brayford Studios to meet their little brother. I don’t know if they were more excited about this or that of the promised Mc Donalds afterwards…

All we needed was for my dear little sausage to cooperate … Oh! well we knew that wasn’t going to happen now didn’t we?!!

Little one spent the entire time bent in 2 with arms and legs flailing about in front of him and chomping on the umbilical cord! The kids thought it was fab though and Travis still thinks it is hilarious that he could kick himself in the head! Even though we didn’t get any clear face pics we could see his chubby cheeks and the sonographer commented that he has my nose. He also listened to baby’s heart beat and said it was normal and nice and strong (the midwife said the same a few days ago) which is a relief considering it is getting squashed.

All in all, even though he looks most uncomfortable he seems very content in there.

 

baby

*cough* hasn’t got daddy’s short legs then :)

 

Chomping on the cord

Chomping on the cord

 

...

 

Crazy swirly mass of limbs and cord!

Crazy swirly mass of limbs and cord!

 

What a week!

Without a shadow of a doubt this has been the worst week of my life!

Last Friday we went for our 4 weekly check up with the only fear of ‘what if the liver has moved up?’ well, it hasn’t, it is still where it should be! Instead we had a new development, baby’s head is now slightly ‘strawberry shaped’. A strawberry shaped head is a strong marker for Trisomy 18 (as are the CDH and kidney issues) that is 3 markers now for Trisomy 18. Trisomy 18 is a chromosome disorder where instead of having 2 of chromosome number 18 there are 3, the condition is usually referred to as being ‘incompatible with life’. Very few babys survive longer than 24 hours, if that, so basically it would be the end of the road…

We decided that we couldn’t leave that hanging over us and needed definite answers so we would go for the amnio, I would ring up on Monday and book it… completely bottled it Monday! so rang up Tuesday… “luckily” they had had a cancellation the next day.

So, there we were Wednesday morning, absolutely crapping myself, frantically practicing self hypnosis techniques that Sophie Fletcher has taught me so I could keep calm! “You will feel a little scratch” says Dr Alex… I feel a little scratch… “you will feel another little scratch” … OOF!!! Dr Alex plunges a dagger into my gut! … sorry, inserts a very fine needle into my uterus that felt just like a blood test… hmm.

We didn’t have to wait long for the results, 48 hours but it has felt like a bloody lifetime! And the good news is that they have come back clear for the 3 biggies including Trisomy 18!! Google ‘strawberry shaped head’ and see the pages and pages of Trisomy 18 websites that come up and you will see why I was so scared! … I know I shouldn’t Google… but I have to!!

The full results aren’t back for another 2 weeks and there is a slight chance of chromosome issues that cannot be picked up before birth, but I’m sure he said something like 95% are the 3 biggies, the Trisomys and they have been ruled out, thank goodness!

We also got a sneaky 3D look at him!

 

“He looks well pissed off! Just like me… I don’t need a DNA test now!”

- Daddy            

baby-3d

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