Christmas Day

I thought of you on Christmas Day
As I walked by where the presents lay
A bird flew past and caught my eye
I looked - a monarch butterfly!
It fluttered and flitted, to and fro,
Putting on a little show
I thought it was a cheery sign
To let me know that you were fine
The spectacle, it didn't last
The monarch flew away too fast
But for that moment, I felt you here
And I smiled, holding your memory dear

Later I went to your Nana's house
She'd opened your presents and set them out
And while we were visiting your Mum and Dad
Nana told of an experience she'd had
That day, while cooking festive cuisine,
she'd walked past the door and what had she seen?
But a monarch butterfly that flew right in -
startling her first, then making her grin
For she thought her darling moko had come
to make sure she wasn't feeling so glum
"Hello, my darling!" she said, as it flew
"You've come to visit me, haven't you?"
"Now go visit the others," she said with a smile
Pleased the butterfly had stayed a while

The the monarch flew up and away
Making its visits on Christmas Day
So if a monarch visited you,
Kataraina must have blessed you, too.
Next time you see the butterfly,
just smile, say hello, then wave goodbye.

Merry Christmas, Kataraina - lots of love, Aunty Eva xoxo

Sleeping Among the Stars...

Today at around 12pm, Kataraina Chantelle Rose stopped breathing...

She was cradled in her mother Myrene's arms, whilst huddled together with her dad Calvin and her two brothers, Jax and Cody.

Her breathing decreased over a period of around 10 minutes, until finally she let go of this world and slipped into the next. There, she won't be alone, and there is comfort in the thought that she will be greeted by our late grandmother, who will protect and guide her on her next journey.

Though her battle with NKH may have been lost, she fought her way through three months of good times as well as the not-so-good and gave us time to know her, love her and treasure her.

She will be greatly missed by all those whose lives and hearts she touched, and now we come together in strength to support her parents during this time of grief and loss.

Thank you to everyone who provided kind words, support - both material and spiritual, love and compassion.

Our butterfly has completed her cycle of life on this earth, but her wings now will take her beyond the clouds and into the heavens.

Kataraina Chantelle Rose Devine

Born 16 August 2005

Died 7 December 2005

'Death leaves a heartache no one can heal;
love leaves a memory no one can steal.'

Pretty in Purple

I visited baby twice today. Tonight when I went there, her breathing had decreased to about 11-14 breaths p/min. And every 10 minutes or so, she is not breathing for a period of about 25-30 seconds. She's quite wheezy/rattily when she breathes, but her heart rate is still pretty steady and hovering above the normal range.

She's quite swollen. This is very obvious in her feet, and her stomach seems quite bloated and firm too.

I will see her again tomorrow.

Build Me Up, Buttercup

And on a side note, Kataraina has in her room a dancing flowerpot which plays "Build Me Up, Buttercup" as its flower stem jerks about, moving around in its dance-related arrythmic kind of way. Kataraina's carers and parents would switch the dancing flower on during baby's seizures.

I realised today when I was visiting her that I will never enjoy that song (not that it was ever a particular favourite of mine). It's always going to remind me of this stay in hospital. :(

I wish I didn't have to work and could go back up to Starship and visit Kataraina!

Update 8 - Breathing Reducing

Kataraina's mum said this morning that Baby's oxygen has been increased. Her heart rate remains stable around 120-130bpm. However, she counted Kataraina's breaths per minute on Sunday night, and they were at 40 breaths p/min. Last night her breaths were down to 20 p/min. She said that baby is still breathing very shallowly, but her breaths are getting further apart.

We're going up to visit her shortly, so I'll give her a big kiss for everyone who is holding her in their hearts, minds and prayers.


UPDATED 3.45pm: Kataraina's glycine levels have increased. They are around 900 now (instead of... I think 400?). I don't know if this will cause her to have more seizures again or not.

Update 7 - Heart Rate Stabilised

Just a quick post to say that Kataraina's mum said today that Kat's heart rate has improved to 117 (120 being normal) and has been pretty stable. Her breathing hasn't gotten any worse. She seems a little stronger and may even be able to pull herself out of this slump. Perhaps it's a similar story to her last visit to Starship, where doctors said she would get worse before she gets better. She's a little battler alright!

DecisionTime pt.2

After work tonight, we almost got home and then decided to go back to town as there would be just enough time to visit Kataraina.

On our way there, we got a phone call to say that things weren't good but that we would find out more once we reached Starship.

Eventually, I asked Kataraina's mum to explain what was going on.

Earlier today, Kat's mum and the nurses had become concerned by her breathing - shallow, short and sharp. The Registrar put her down for an urgent blood test, which would test her blood-gas levels.

Those results came back this evening. It seems that Kataraina is not exhaling properly, so as a result, the carbon dioxide in her breath is building up in her body and being absorbed into her bloodstream.

The part of the brain which controls breathing, for Kataraina, is damaged. It's not functioning properly and it's sort of telling her body to stop breathing.

She is receiving oxygen, but the problem remains that she can't expell the carbon dioxide fully.

Kataraina's parents were asked to make a decision about what to do. They could continue to medicate and keep her in hospital, eventually putting her on artificial life support permanently, or they could let her die naturally.

They have decided to continue all her medications, including IV-administered antibiotics (just in case she does have an infection they can't see). However, when she stops breathing, they will NOT be resuscitating. She may be moved to palliative care or to ICU. We haven't received that info yet. She may even pull through. She has still got 10 days left of her steroids course, so maybe the full course will help her somehow.

Update 6a - Breathing Irregularly

Baby is going to have some blood tests soon to measure blood gas.

The doctors are concerned at Kataraina's breathing. The hospital Registrar has been to see her and check her responses, and is very concerned with her breathing. It was described to me as being like short-breathed gasping but without the gasps.

The Registrar has marked her down for urgent blood tests, so they'll be done today and the results should be in within a couple of hours.

There's little else to pass on at this point. But will post results stuff anyhow.

Update 6 - X-ray Clear

Just had a very quick phone chat with Kat's mum, and the X-ray didn't show anything, which I think is good. However, her breathing pattern has changed, and it apparently resembles subtle hiccups, because she isn't gasping when she inhales, but her body shakes a little each time she draws in air.

That's all I know at this stage, so will sign off until I hear more.

Update 5 - Sleeping on Steroids

Oops, it's been a little while since I updated! Kataraina started steroids on Wednesday. Since then, she has not woken up, but her seizures have reduced in both frequency and severity. Her first day of steroid treatment, she only had three seizures that day. Now they last only around 3 mins each, which is a massive improvement from around 17mins each.

Apparently she's not being weaned off the Vigabatrin, because then she'll be taking no anti-convulsant medication, so perhaps they decided to reduce the dose but not remove it altogether.

When I got there, she'd just been suctioned to remove mucus build-up in her throat because her breathing was so rattily. She's on the oxygen now, too. She was being taken for an X-ray as we were leaving - a chest X-ray to see if she has an infection or anything.

On Thursday (I think) Kataraina's nana took some photos of her in the christening gown. She was christened at around 12 days of age, while she was in SCBU at Middlemore Hospital. But at that time, she was very very sick and could not have photos in the gown, so it's just as well they did them now cos soon she'd be too big to fit! Here's a picture of Kataraina and her mum.