One year on...

(Just a warning. This post contains some post-operative pictures of Ella).

A year ago today we handed over our precious baby girl to the heart surgeons at Alder Hey.

We found out about her heart defect when she was a day old and I have to say it hit me much harder than the Down's Syndrome diagnosis did.  I suddenly felt incredibly guilty that we hadn't known anything prenatally.

If we had known before Ella was born about the Down's Syndrome, the midwife and doctors would have been aware that a heart defect could be present. Or, we could have found out if there was a problem with her heart prenatally.  I feel lucky that her heart problem was picked up early and that the defect she had was not life threatening in those first few minutes, hours or days after her birth. It could have been so different.

It was the heart defect that contributed to Ella's poor feeding and failure to gain weight.  This led to her needing a nasogastric tube for feeding (and later her gastrostomy). 

The experience of her surgery is still something I find hard to put into words and remembering the week she was in hospital is still upsetting for me.  To sum it up in one sentence it seems that, as parents our hearts have to be broken in order to get our babies hearts mended. 

So, the following is taken from the Ella's story page which is the best I can do for now...

"On May 12th 2011 at Alder Hey Hospital, Ella underwent open heart surgery to repair her VSD (Ventricular Septal Defect - hole between the wall of the ventricles). Her op had been cancelled twice before, so it was third time lucky.  

I don't think I can explain how I felt, it's not something that is easily put into words. For the most part, survival mode kicked in and I pretty much ran on autopilot for the week she was in hospital.  

Even being a nurse and working in a clincial environment, nothing prepares you for seeing your own child, so small and vulnerable,ventilated and hooked up to noisy machines.  I remember wanting to run away but knowing I could never do that to her.

I could manage about ten minutes at a time sitting and watching her.  I knew she needed time to get better, but waiting was the hardest thing to do.  I just wanted to scoop her up and cuddle her but I couldn't even do that.  She was on ITU for two days (instead of just one) after a minor hitch that set her back 24hrs.  Considering she had  just had major surgery, she came through it very well.  

After her 2 days on ITU she was transferred to the ward and was discharged on day 6 post surgery.  She has a 3-4 inch scar down her chest and a residual tricuspid valve leak which is being monitored.  She has more energy now and has most definitely recovered much quicker than her mummy and daddy!"

We last went for a heart scan just before Christmas.  We are told her heart is healing well post surgery and we go back again in August.  Hopefully, she will never need any more treatment or surgery but it will always be a worry that will forever stay at the back of my mind. That's what being a mum is about!

As this is also international nurses day, it would seem appropriate to add in a big 'thank you' to the nurses at Alder Hey who looked after Ella and us so well.  They made the ITU experience a lot less stressful for us (bearing in mind we knew more than most parents due to our medical backgrounds) and we always knew Ella was in safe hands.  They do a wonderful job looking after very sick and vulnerable children, it's a job I know I could never do.  Thank you.

To my gorgeous, happy, healthy, bright little Ella...Here's to celebrating many more 'heart days' xx

Twinkle Twinkle...

It is well known that children with Down's Syndrome are very visual learners.  Learning through seeing and doing is how they process the world around them.  That is why we were encouraged to start signing words to Ella from very early on.

(Not quite as early as this pic, but from about 4 months old)

We started with things that we did or happened a lot such as drinking milk (drink), change (nappy), sleep, car (you get the idea!).  There are also signs for hello, where, what, sorry etc... Here are a few examples...

Drink:

Makaton is different to sign language.  The signs are mostly intuitive and involve an action rather than a static sign.  The word that you are signing is always spoken alongside the sign, unlike sign language.  

In the beginning, learning a few signs was fairly easy but now she is more engaged and we are doing more with her I now have to know lots of signs!  Animals, places, feelings, objects.... It's never ending. I have also been known to use signs during conversations when Ella isn't there (at work, out with friends....)  

Nursery also embraced the signing and have had some great results from the other children too.  They have even introduced 'sign of the week'.  It is known that babies understand verbal language and words long before they can speak themselves.  Signing is used to bridge the gap between understanding and talking.  And using the sign doesn't stop children from speaking or delay their speech. Once they can verbalise the word, the sign drops off as they no longer need it.

The pay off for starting signing with Ella so young is that we are now beginning to get some feedback  and we are very proud of her! Even better than just signing she is also attempting the word with the sign.   We get 'awa awa' when she waves and 'tar' for star....

Our little superstar xx

Moving on

Empty drawers, packed boxes, charity shop piles.  Moving house isn't just a case of packing everything and taking it with you, it's a time to de-clutter, organise and sort.  Just wish there was a Mary Poppins way to go about it!...


Sorting through our (many and not always purposeful) possessions has not just been a practical and actual task.  It has allowed me the chance to reconnect objects, pictures and sentimental items with the memories, people and emotions that are attached to them.  The items that surround me everyday but that I no longer 'see'.  


I had forgotten that I started a memory box for Ella - scan pictures, hospital bands, new baby cards. I added a few new things to it - feeding cups, a feeding tube and first birthday cards.  I re-read all the cards, unfolded and re-folded the littlest Hungry Caterpillar sleepsuit and remembered her all tiny in her cot on special care at the beginning of our uncertain journey.  It was hard looking back but feel very proud of what Ella and we have achieved over the last 18 months....

Ella is, for now oblivious to the move.  The addition of packed boxes to the living room has caused some interest but we will wait and see how the actual move will impact on her.  I am sure she will be fine.  


She's still loving her books, now signs 'phone', 'star' (once or twice accompanied by 'tar'!), bath and more and she tries to do book (which looks a lot like more...).  Still not worked out what her other, consistent signs mean.  Oh and she's started shaking her head for 'no'!  Loves having people around and playing with her ball...

Happy Monday everyone.  I am off to fill some more boxes...xx

Growing up

I am beginning to realise that as a parent, your child begins to teach you from a very early age about the concept of letting go.  

At just 16 months old, Ella is already more than capable of asserting both her determination and independence (and don't we know it!).  I have recently become aware of this little person beside me day by day, no longer a baby.  


Her understanding of the world around her has suddenly and perceptibly shifted up a gear.  She waves goodbye to people (and whenever we go anywhere near the front door), points at everything, seeks attention from strangers and has started using a few signs (both on demand and in context without prompt).  She has started using more 'words' and also has one or two words and signs that she uses consistently but I have yet to work out what they mean!...

Signing for more bubbles!

Pointing and shouting

 Popping bubbles

Book pointing (still loves her books)

For months she has been trying to crawl. Although she has mastered a very amusing and speedy backwards crawl, going forwards still remains a challenge.  She can roll, go round in circles and get what she wants by commando crawling but the four point crawl has yet to appear....

We are no longer having to do battle every day to get her to wear her shoes.  She is tolerating them much better now she is used to them. In the last week, she has started taking steps whilst holding onto our hands which is exciting stuff and very important in terms of her development...  

I know there will be a time, hopefully in the not so distant future when she will let go and take her first steps on her own.  But for now, I will treasure the moments where she still needs to hold on...

We are very proud of you Ella Bean xxx

Making memories

 The sky is ominously dark and the rain is teeming down as I sit and type this. I also have to go to work today. This time a week ago the sun was shining and I was setting off with my friends for a work/life/baby free weekend in London. Chloe, Lynne, Suzanne & I organised the weekend to celebrate our 30th birthdays and we had a fabulous time.  

Lots of lovely food was eaten, we drank, walked, saw a show and some London sights, shopped and spent way too much money in the process!  

More importantly we talked, laughed and reminisced, all the while making more memories to remember in the next 30 years...

We walked along the Southbank, taking in the view across the river Thames, past The Tate, Globe Theatre, Southwark Cathedral and ended up at Borough Market.

Coffee at The Oxo Gallery

St Paul's Cathedral

Tate Modern

Just before it rained

The view from Waterloo Bridge - the best view from any bridge in London we are reliably informed (Thanks Ian W)

 The Globe Theatre

Southwark Cathedral 

The Shard

 Macaroons!

Saturday afternoon we went to see Wicked the musical which was excellent...

Then on Saturday evening we ate at Level 7 Restaurant at The Tate.  Very lucky to have  a window table right opposite St Paul's with stunning views down The Thames as the sun went down...

Butternut Squash & Stinking Bishop tart...

On Sunday, we wandered across Waterloo bridge to Covent Garden...

We went for a coffee in Neal's Yard, checking out the wonderful remedy shop and the wonky mirror!...

So Ladies, thank you for a lovely weekend and for the memories xxx

For Good (From Wicked)

I've heard it said

That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me 
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...

Like a ship blown from its mooring 
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood

Like a ship blown from its mooring 

By a wind off the sea
Like a seed dropped by a bird in the wood

Who can say if I've been 
Changed for the better?
I do believe I have been
Changed for the better

Because I knew you...
I have been changed for good.