Arrive in
Melbourne 1.20pm, and catch a cab to our accommodation,
which is in Grattan Street right opposite the Royal
Womens Hospital. I'm still
very much upset that we've had to leave our family and
friends. What should have been a happy event coming up
for us was now going to be a very lonely and trying
time.
Today is the
4th November
2.45pm... We
meet up with a lady called Marita at the Womens
hospital. She showed us the ground floor where the
paediatricians are located, and where we are to go
Monday to see an obstetrician. It's now the weekend
tomorrow and nothing happens. already getting impatient
and want to go home!
Today is the
7th November
2.40pm...
Attend the Royal Womens Ultra Sound Unit, saw Dr Michael
Stewart ( Paediatrician ) who gave us a brief run down
of the delivery process and transfer to RCH. Baby's
condition will be more accurate after birth and could be
more favourable if we are lucky! Saw Dr Lisa Beag (
Obstetrician ) who checked my blood pressure, all was
ok.
Today is the
8th November
Met up with
Bev O' Sullivan, who showed us around the nursery area
where babies are sent to be checked and monitored prior
to being moved to the RCH.
Today is the
9th November
Attend the
RCH to meet up with our social worker Jess Ballentine
and Swee Kum. They spoke with us about what is
performed at the RCH with children suffering with HLHS.
They showed the ICU area on the 7th floor where babies
go post surgery. After the tour we got to speak with Dr
Christian Brizzard, who is the head surgeon and who will
be performing surgery on our baby. He explained the
surgery procedure, and showed us diagrams of the
operation, and post operative monitoring, and
difficulties encountered were also discussed. He read
out reports from Brisbane and said that our baby's heart
condition was borderline, that was positive news to
hear!
Today is the
10th November
Met up with
Professor Dr Dan Penny...He was very positive and
reassuring they will do their up most for our baby.
Today is the
14th November
Saw Dr Lisa
Beag again and she has arranged for me to be admitted
into hospital on the 16th to be induced.
BIRTH DAY!
Today is the
16th November
Arrived at
the hospital at 8am, was shown up to the 4th floor where
the birthing suites are. Waters were broken at 10am, and
was told to take a 30 minute walk around the block, and
then return to the birthing suite. 12.20pm a drip was
put in to speed up labour, and shortly after I'm in full
labour and quite happy on gas and air! 2.48pm Jessica
Grace arrives into the world, black hair, dark eyes, 10
fingers 10 toes! And weighing in at 6lb 3oz...What a
little GEM!
Jessica
was taken to the nursery in ICU, I didn't even get to
have a cuddle, I was so upset. After and hour went to
the ICU area and I got to have my first cuddle!
All monitor readings were good and she left for the RCH
with NETS at 5.30pm I left hospital at 8pm and went
straight to our accommodation to ring the hospital and
was told that Jessica was fine and stable.
Today is the 17th November
Today we have moved apartments to be closer to
Jessica, we are now right opposite the Childrens
hospital in Flemington road.
We
both went over to see Jessica in the PICU ward.
We spoke with Jessica's nurse called Tarryn.
Jessica was doing ok and was in a stable
condition.
We
spoke with Professor Samuel Menaham a
Cardiologist, who explained that Jessica needed
to have a minor Norwood procedure on her left
ventricle. After lunch we had a meeting with
Dr Christian Brizzard who said that Jessica
would be having her surgery on the 18th at
8.30am.
During the day 2 Genetics Doctors, Dr Agnes
Bankier and Tiong Tan came and saw us, and told
us that they were doing some tests on Jessica,
because they believed that she not only had a
heart problem but also a Chromosome defect as
well, which could lead to a serious issue with
her surgery! We asked them what they
thought was wrong but, they were not willing to
tell what they thought was the problem. Once
again we were left in the dark! They took blood
from Jessica to do their tests.
I
feel so defensive of Jessica, and did not want
to listen to what they were telling us, how dare
they say that our child had another serious
health issue! I was so upset and I just cried
for ages, it was now becoming very hard to deal
with. Tarryn, Jessica's nurse tried to reassure
us and to wait until all the tests came back.
John and I had a great cuddle of Jessica and did
not want to put her down. Dr Christian
Brizzard came to see us to say that Jessica's
surgery had now been cancelled because the
Genetics people needed to do their tests.
Surgery was now on the 24th November.
Today is the 18th November
Went
over to PICU this morning to see Jessica, she
had a comfortable night according to nurse
Tarryn. She slept very well and was still
stable. The hospital chaplain came and
introduced himself - Tom Rose. This afternoon
Agnes Bankier from Genetics came to see us
again. They still did not have Jessica's results
through, so they could not tell us if anything
was abnormal. Hopefully they will be back by
next week!!!! An eye specialist came to
look at Jessica's eyes, They keep saying that
Jessica has " funny " shaped eyes? They are
almond shape in appearance and her head is far
to small for her body length? The eye
specialist carries out her tests and say that
Jessica's eyes under her lids are normal in
size, it's just the eye lids are very tight and
narrow. They will most probably grow as she
grows, as she is a small baby. They also said
that it may just need a little cosmetic surgery!
Her eye sight was also very good! As
Jessica is doing well they have moved her from
PICU to 7 west until her chromosome results are
in.
Today is the 19th November
Went to see Jessica on 7 west, Josie her
nurse said she had been stable over
night, but only her respiration was
fluctuating and that they were keeping a
close eye on it. If need be they can
control it with medication. I held
Jessica for a few hours whilst john
gave her an nice foot massage with baby
oil, which she loved. She was always so
relaxed out of her bed and loved her
cuddles!
Tarryn, Jessica's nurse from PICU came
to see Jessica during her break..was so
nice to see her! She has become a
tower of strength to John and I ~~~
Another Dr came to see Jessica and
checked her over, he was happy with her
current condition, but said if her
respiration continues to fluctuate they
will consider sending her back to PICU
for closer monitoring.
It's now midnight and we get a phone
call from the hospital to say that
Jessica has been returned to PICU. They
had inserted a breathing tube to assist
her breathing and that she was now
stable again and was doing well.
Today is the 20th November
John and I spent the whole day with
Jessica. She was comfortable, Tarryn and
Dr Johnny Miller said that she will now
stay in PICU until her surgery.
It was a good day, but neither of us
could hold Jessica any more because of
all her tubes to help her breath.
Another cardio echo was done on
Jessica's heart and she was fine.
Today is the 21st November
Spent another day at Jessica's bedside.
She was doing well and being looked
after by Tarryn. Jessica had to go
down for an MRI today, they took her at
3pm and came back at 4.30pm.
Tarryn re organised all of Jessica's
equipment and had her up and running in
no time! Jessica actually opened her
eyes today! wow we finally got a small
glimpse! Still no results from the
Genetics people, we are now living on
our nerves waiting for news.
Today is the 22nd November
Spent another day at Jessica's bedside,
Juliet is Jessica's nurse today as
Tarryn is having a well earned day off!
Jessica is not to well today and has a
swollen tummy. During the day her
temperature goes slightly up, and they
give her paracetamol to control it. Her
heart rate is increasing too, but
medication and another equipment is put
in place to control that too. All the
nurses work around the clock to get
Jessica stable. Jessica's MRI scan
comes back fine, but the chromosome
results are still not back!!!
What is going on??? seems such a long
wait..we enquire as to the length of
time it's taking to come back and one of
the nurse goes to find out what is
taking them so long.
At 6pm we are asked to go to a meeting
with Dr Agnes Bankier and Dr Christian
Brizzard. Jessica's chromosomes
results were not looking positive and
they needed another 24 hours to complete
them. Jessica was getting more and more
unwell as the days pass. Dr
Brizzard stated that apart from her
heart condition, there is a likelihood
that there is a brain defect which would
compromise Jessica's health. Her op
would now be put back until Thursday.
We may have the very hard decision to
terminate Jessica's life if the results
are not what we were expecting..
Today is the 23rd November
Today grandma and Nannu arrive from
Brisbane to see Jessica. We spend
the day with Jessica, who is very slowly
getting much worse now. Her tummy is
very swollen and everything that the Drs
and nurses had tried so far to control
it has failed. Saw Agnes Bankier
again today from genetics, they have
told us that Jessica had a serious
Chromosome defect, her chromosome 15 was
partly missing! This was called 15Q
DELETION. We received a phone call
from the hospital tonight from Tarryn,
we were asked to come back to the
hospital to have a meeting with Dr
Brizzard. We arrived at the
hospital and was shown into a room with
Christian, he told us that he had, had a
meeting with the genetics people who
confirmed that Jessica had 15q
deletion.. Our world had just
collapsed around us. Dr Brizzard
told us that along with Jessica's heart
problem and now with this serious
Chromosome defect Jessica would have no
quality of life and that the most humane
and ethical thing to do was to allow
Jessica to slip away peacefully. He
would perform no surgery on her at all,
and he expected her to pass away
peacefully herself in the next 24 hours.
We went back to Jessica's bedside and I
just broke down. The past week had just
become far to much. All I wanted
to do was rip out all of Jessica's tubes
and needles and run with her. We both
had a very bad night and a very hard
decision to make
Today is the 24th November
John And I had the most
horrendous night possible. We
had to make a very hard decision
on whether to keep Jessica on
her life support machine. We
both arrived at the PICU this
morning at 7.30am, nurses
Delores & Juliet were looking
after Jessica today. We spoke
with Delores and told her that
we had decided to let Jessica
Pass away peacefully and with
dignity, and that we wanted all
her tubes and needles removed
and her life support switched
off. Delores agreed that she
thought that it was the right
thing to do as Jessica was a
very sick little girl.
Delores had to go and speak with
a Dr who was on duty to let them
know of our decision. Not long
after Delores came back and
spoke with us, and said that
Jessica would be moved
to private room where we could
be with her in her last moments.
We asked Delores if she could
possibly get in touch with Tom
Rose the hospital Chaplain and
ask him if he could perform a
baptism for Jessica. She did as
we asked and Jessica's baptism
would be done this morning, with
family members by her side.
Juliet and Delores did hand and
foot prints, and hands and feet
clay moulds, they looked so
tiny! Delores got a very pretty
white dress and some pink
knitted booties for Jessica to
wear for her baptism. Tom Rose
came to see us and told us what
he would be doing for Jessica's
baptism.
Whilst all this was being done,
Most of Jessica's medication had
been removed and just the line
that was coming from Jessica's
tummy and her morphine was left
on.
Jessica looked so small and
helpless and I felt so cruel to
be doing this to her, but we
both felt that it was the
kindest thing that we could ever
as a parent do for her... there
was no more that could be done
for her to save her life, she
was far to sick by now.
Most of the family have arrived
and Tom Rose started to perform
Jessica's baptism, it was the
most beautiful service and Tom
Rose made it very special.. I
just cried my heart out all the
way through, how could nature be
so cruel?
After the service everyone left
John and I to be alone with
Jessica, and Delores took
Jessica out of her bed and put
her in my arms..it felt so nice
to be able to hold her once
again, as I hadn't be able to
because she had been so unwell.
After nearly an hour Jessica
passed away peacefully in my
arms, she was no longer in pain
and she looked so at peace. I
handed Jessica to John, as I
wanted her to be in the arms of
her daddy for the last time.
I spoke with Delores again and
she asked me if I would like to
bath Jessica? I wanted to do
this for Jessica because as her
mother I hadn't had the chance
to do this. It was a very hard
thing to do, but I'm so pleased
that Delores gave me the
opportunity to be able to do it
( Thank you so much )
After Giving Jessica her bath
John and I stayed with Jessica
for the rest of the day just
holding her, kissing her and
telling her how much she was
loved and that we would miss her
terribly always ~~~
We didn't want to put Jessica
down as we both knew that when
we did it would be for the very
last time, but eventually we had
to leave her behind and go home.
It was the the saddest day we
had ever had.
Today is the 2nd February 2006
It has been hard some days since
we arrived home, and we think
about Jessica every day. But we
know that the pain with become
less and we will just have happy
memories, and that we will laugh
again. But for now we take each
day as it comes and we look
forward to much happier year.
We like to take this opportunity
to thank Ian Todd the Police
Chaplain for the most beautiful
Funeral service he did for
Jessica, it was unique, and
definitely one of a kind! ( You
know what we mean! ) We will
always associate Little Nutbrown
Hare with you and Jessica!
We would also like to thank all
the Drs and Nurses up on the
PICU ward who looked after
Jessica with so much love , care
and devotion.
