Tuesday, April 10, 2012

Shoot Those Tiny Arrows

January 23rd 2012

Today we had Louise's regular cardiac check-up.  John came along with me because I wanted him to be there as we needed to try and pin down a definite plan for having Louise's brain MRA done which would include the heart MRI.

The doctor was very pleased with Louise's colour and demeanour and said she was looking super!  We  got her ready for her ECHO and much to Louise's chagrin he put a big dollop of the gel onto her chest-gone are the days when she used to gurgle up at him with all the charm she could muster.  Well he is pleased with how things are looking. There's a little bit of backflow ( into some vessel, I'll check with John later) but he's not too worried about that, she might grow out of it.  He showed us her fabulous left ventricle and then her tiny little right ventricle, barely there now.  He ased about breathlessness and what makes her blue (really only swimming and cold) and said that was expected, as after all...and the first time I ever heard him using this phrase...she only has half a heart.

And then he shot an arrow through MY heart..."Well, we'll plan her surgery for Summer next year" 

(!!!!!!!!)What!!! Sorry,  my plan was that that was her finished with surgery!!!

Well, it seems not, it's my own fault as he told me not to build up my hopes and of course I did.
Anyway, we then discussed her heart MRI and brain MRA and he said he'd do the heart when she's 15 kilos (she's 11 kg now) which will probably be around next Christmas.  He said she'll always be slow to gain weight, she's a lean baby.  Then schedule her surgery, providing she meets criteria..adequate pulmonary artery growth, lung capacity etc.  What about her MRA..well he said go ahead and organise it separately as he will want a neck line put in under general anaesthetic to measure pressure  and it wouldn't be a good idea to be doing any other procedures at the same time.  That suits us fine as now John can full steam ahead to organise that.

So now instead of one more day under oral sedation, we are now looking at two procedures under general anaesthetic and major surgery next year.

I am gutted.

That said, John is happy about it as his preference is that Louise will have the gold standard circulation that is best for her, and it would be terrible if they postponed it only for her to have it done when she was a teenager or older with all the psychological factors that would kick in by then.
I know he's right but I am just dreading living through all that again, I had put it behind me (sort of).
God will equip us I know.

So it's looking like this blog will be waking up from it's dormant state.

Here's the medical explanation of her operation.

Keep praying for us,

Jennifer (& Louise) xx


  1. Steph Says:
    She’s certainly shown us how to “live life to the fullest”, and will continue to do so – she’s a wee trouper!!! I’m sure John knows best and we’ll go with his positivity. Love and prayers always, Steph xx
    January 23rd, 2012

  2. Kate Kent Says:
    Jennifer: Louise has demonstrated unbelievable resilience and spunk in her short life thus far. She has surprised you at every turn and she is delightful in her antics and her bravery. Whatever lies ahead, Pierce & I have no doubt that she is able to withstand the challenge. I know it’s terribly difficult for you and John et al but Louise herself seems extremely adaptable and ready to roll! We will always have you and Louise in our prayers. Many blessing to you all!
    January 24th, 2012