Saturday, 12 May 2012

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.

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

Thursday, 10 May 2012

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...

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

Monday, 7 May 2012

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

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