Archive for November 2010
and tomorrow it’s Tuesday.
Whirlwind.
That’s as good a word as any to describe the last few days.
Life has a way of creeping up on you when you least expect it,
or in my case;
when you know it’s out there but you’ve tried to forget about it for a while.
There have been some new editions to the family:
another terrible impulse buy
which turned out to be not so terrible after all.
The early birthday bunny surprise brought much happiness into the hutch,
I mean, house.
I’ve learnt a few things,
like
I am easily persuaded by cute
and
I am a super bunny hutch builder extraordinaire
and
bunny surprises are almost as exciting for the giver as for the receiver(s).
Also, you can dissuade your (almost) five year old daughter from calling every single thing she owns Allie
and your (almost) five year old son from calling his newly acquired bunny “Xfactor”.
In case you were wondering,
they settled on Cinnamon and Angus.
The furry pair have kept the human pair busy and occupied,
which is a good thing because the countdown to the little girl’s first ballet concert was becoming exhausting
for all of us
but finally the big day arrived.
I’m not sure how to describe it
Magical.
Happy.
Wonderful for Ivy
who finds so much in dance that lacks in her every day (inserting photo montage here because a picture paints a thousand words and all that).
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and that was just Sunday morning.
After the concert we moved over to the park
and had a birthday picnic with Gran and Grandma and Pop
because,
if you are going to have a birthday you may as well stretch it out for as long as you can.
You only turn five once, you know.
At the end of the lovely day everyone was exhausted.
Today we finally caught up with good friends and in the afternoon
and on the eve of their fifth birthday
Noah was presented with his first real camera (a wish he has harboured for most of the year)
and after making sure it would all be okay with the various doctors
Ivy had her first major rite of passage as a girl living in this house;
and tomorrow it’s Tuesday.
The year has come full circle and the pair will be five.
I can hardly believe it.
Just the facts… and maybe some feelings about those facts too.
The growth hormone levels came back normal for Ivy.
It’s a good thing,
yes.
It’s good but it’s also frustrating and confusing.
It means that her body is making good levels of hgh but it doesn’t know what to do with it
and that’s not great.
It means that we can still apply for the medication
if we want to;
(wait six months for an appointment, fill out a forest worth of paper work, fight with bureaucracy)
it just means more (flaming) hoops to jump through.
The endocrinologist is all for our applying to the government,
and thinks that the synthetic hormone might be the way to go.
The paed wants us to wait.
He wants us to keep exploring the immune system wipeout idea with the immunologist.
The immunologist, who only three months ago, told David and I that she was happy with the way things were,
bar the lack of growth for the girl.
The paed believes that by going down that pathway, we will achieve a decrease in other medications
and Ivy may very well start growing on her own.
I am starting to get that backed into a corner feeling.
This is what I think;
The thought of killing Ivy’s B cells makes me want to throw up.
Every fibre in my being screams to me that this is not the right thing for her,
right now.
I don’t really want to treat the side effects of another medication though either
but to me
it seems the lesser of the two evils.
In my ideal world
I could start Ivy on the growth hormone over the Summer.
It would give her six weeks to get used to the idea and it would also give her an advantage for when she starts school.
She may have grown a bit,
her risk of heart issues decreased,
her chances of bone fractures may have reduced a bit,
her health may have benefited too
and all of those possibilities combined could give her some kind of protection from the new experiences school brings with it
and if it works
who knows,
perhaps, with the change, the paed and the immunologist would stop talking about ‘the wipeout’
and I would be able to sleep again at night.
Of course, it’s not a perfect world.
Is it?
Celebrate
What do you do when you are feeling down?
Here, we celebrate the little things.
This weeks theme at I heart faces is paper.
It provided the perfect excuse.
A normal course.
When doctors sit down to take Ivy and Noah’s history I tell them
they were born at 30 weeks. (they are my second set of premature twins, Immy and Maddy were born at 35 weeks)
They nod their heads solemnly and ask about it some more
and my stock standard answer is always ;
“it was your normal premmie course”
and it was
but what does that mean, exactly
because it was in no way normal,
compared to a full term birth
and there were scary days in there
and
I had times when I didn’t cope.
Behind that seemingly flippant statement
is a powerful, emotional history.
Ivy and Noah were born late at night on the last day of Spring in 2005 -
originally, they were supposed to be Valentine’s babies
and then they were scheduled to be Christmas babies
but the pair had other plans.
I had bled
and niggled,
the pain and fear was all too much
and finally I started to labour
amongst the chaos of a family visit.
Decisions were made and I found myself watching the fluorescent lights of the hospital fly by me as my bed was taken to theatre
and then they were there.
Tiny and sweet.
I knew though
that we had a long road ahead.
They needed help to breathe,
help with their lungs.
That meant intubation,
a synthetic form of surfactant pushed into their lungs
and CPAP.
Failed trials off and setbacks.
Gavage feeding, nasogastric tubes, lines, monitors and wires.
Days of not being able to hold them
learning about sternal rubs, apnoeas and breaths per minute.
Medications, fortifiers, and lots of tests.
Failure to thrive.
It meant feeling torn between home and the hospital,
that they were not exactly my babies
yet.
Pumping and stress and worry and lots of tears.
It meant feeling like a failure when they’d had a bad day
and triumphant when things went well.
It meant all of that over nine weeks inside of the NICU.
It was a typical, run of the mill, prem baby entry
and we all made it to the other side.
Thank goodness.
This year, on the last day of Spring, those tiny prem babies,
they’ll be five.
I wonder how I came to be so lucky to have them in my life
and I’m thankful that they were strong enough to fight.
November is Prematurity Awareness month and this week is National Premmie Week.
I will always be grateful for the doctors and the nurses who brought them safely through their prematurity.