1 June

Daddies Girl, Mummy went to work for a wee while today so Maisie spent alot of time with Daddy. Daddy read the paper and then changed Maisies nappy.
The nasty consultant came to do a scan on Maisies heart so she held on to Daddy's finger because he keeps her safe. The scan showed that the duct is almost closed and so Maisies heart is now beating stronger. There are two more doses of medicine to have today and tomorrow.
Maisies lungs arenot so good at the moment, chronic lung disease is taking its toll, the sooner she can get off the ventilator the better - if the duct will close fully this will help considerably. This shouldn't have a long term effect.
Mummy finished her visit with another story. I think Mummy likes Hairy Maclary.

R&S Z&M x



Daddy thinks I'm no bigger than a nice brown trout



Thu 31st May 2012

Maisies Day;

After a good night sleep Maisie had a great day, she was
joined in her room by twins, so she has some friends to play with, they're
a lot bigger than her but I'm sure she'll hold her own. :D

The blood transfusion went very well last night and a scan also showed that
the duct is narrowing which in turn is helping her wee heart pump better.
Maisie has had a lovely day finished off with Mummy reading the story Hairy
Maclary from Donaldsons Dairy, which apparently makes a nice change from
Daddies mad stories!

To all with love R&S Z&M x

Wed 30th May 2012

What Maisie did next;

A busy day for the wee one.
Maisie was back topping up her tan today under the UV light as she was a
little jaundice.
She was also back on the medicine to help close her duct, still no real
side effects from this which is positive. It is a longer course over 5
days.
Breathing is still a struggle and Maisie is on extra Oxygen today.
Also the iron levels in Maisies blood are low today, maybe because we keep
taking her blood out to do tests every hour or so. To resolve this she is
currently having a blood transfusion - just 17mls which seems such a small
amount when you consider the big bags we fill when we donate blood.
Thank you for all your thoughts and prayers. R&S Z&M x

Tue 29th May 2012

Laisie Maisie;

Well after 10 great hours breathing on her own
unfortunately Maisie is back on the ventilator, she is able to breathe on
her own however her wee lungs aren't clearing the carbon dioxide from her
blood.

She's had a scan and the duct is still there so she's starting her medicine
for another few days which will be monitored daily.
Maisie opened her eyes for the first time today and you guessed it the
first thing she saw was the most beautiful sight of her Daddy! How lucky
can Maisie be? Daddy did explain that the rest of the world might not be so
good to the eye :)

Daddy tried to take photo of Maisie with her eyes open but wasn't too
successful (note to self; even if you think you've turned the flash off
take a picture facing away from Maisie to test your camera skills before
pointing said camera at Maisie who's just opened her eyes)
Meghan and Zach visited again, Maisie took one look at Zach and hasn't
opened her eyes since. :D

It has been a restful day today which is good. R&S Z&M x

Has Daddy turned off the flash?

Mon 28th May 2012

My aMazing Maisie;

Day 10 and Maisie made progress today firstly
by managing not to attach the velcro from her arms to the velcro on her
bonnet (it was becoming a regular occurrence which is quite funny to see).
Secondly her ventilation tube was leaking (probably due to Maisie being so
active) so instead of replacing it the fantastic Nurses tried to see if
she could breathe on her own (with reduced support but more oxygen) - which
she has now been doing for 4.5hours - Major Progress!


Maisie breathing on her own - with Oxygen


Don't get too excited though as it's really hard work for wee Maisie and
currently all other treatment is on hold as being able to breathe on her own
will benefit her the most. She's back a drip instead of Mummy’s milk as not
having a big belly will help her breath better.
However Maisie did get a wee dose of Caffeine as it helps to stimulate the
part of her brain used for breathing! R&S Z&M X

Sun 27th May 2012

Lazy Maisie; what a beautiful day to be lazing about doing
nothing. Maisie has spent the day rather peacefully recuperating after the
last few eventful days and hopefully after a wee bit of rest she'll start
make more progress.

The medication for the duct partially worked so she will need to have
another series of treatments this week, a positive is that there were not
really any side effects.

Tomorrow she should be strong enough to have a scan of her heart to see how
much the medication has taken effect and also as she's back on Mummy's milk
she'll be back to having a full tummy.

Zach and Meghan spent the afternoon with Maisie and gave the Nurses a
grilling to find out what's what - ensuring that their wee sister was
getting looked after.

Grand (Great) Aunty Eleanor and Grand(?) Old Uncle Carl visited and left
Maisie an lovely tuneful bunny and a pretty soft blanket - thank you x. R&S
Z&M x

Sat 26th May 2012

Maisie was a little bit naughty today...
She pulled her ventilator tube out! It was a little clogged up so she
probably wanted a nice clean new one. The nurses have now put a glove on
her left hand to try and stop her pulling at all the wires and tubes
holding her down, does this mean she might be left handed like her Daddy?

Maisie cannot pull out tubes now!

After all the energy used this morning destroying her equipment Maisie has
spent the afternoon quite peacefully resting, conserving her energy for
another day.
The medicine seems to continue to work and the last dose is this evening,
although Maisie still insists that she doesn't need to breathe on her own.
R&S, Z&M X

P.S Mummy had a good sleep in the chair by the incubator this afternoon
while apparently keeping a close eye on Maisie