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She was pretty tired and couldn’t actually
get enough, so we would feed her my
expressed milk via her nasal tube at
the same time. I didn’t mind, I knew
she was getting my milk one way or another.
I just loved the cuddles and she did
too. It was more of a comfort thing
for both of us. She would latch on look
into my eyes for a while, and I would
talk to her until she would fall asleep.
Hayley’s daddy loved his cuddles too.
She was always so content with us.
I am so thankful that I took so many
photos. Sometimes I wish I had more,
but we have over 200 of her 13 days
with us, so I am glad we have them to
look at everyday. I know that 200 sounds
like a lot, but when think about moments
that you didn’t capture in a photo,
you really regret it. You notice new
things about them each time that you
look at them that you hadn’t noticed
before.
We were waiting for her 1st
op which we were expecting would happen
at the beginning of the following week.
I was hoping to have her at home by
the 8th of June, for our
1st wedding anniversary.
What better present could we possibly
hope for?
Jason and I spent every moment that
we possibly could with her. It took
us an hour in the morning and at night
to get to and from the hospital, so
that was very hard to be so far from
our little girl. I was very emotional
as it was, let alone to not have my
little girl by my side. I had talked
to her constantly while she was in my
tummy and I was so upset that she would
not know where we were.
We stayed in the Red Cross rooms from
that night. It was a very long night
and we definitely didn’t sleep much.
I just couldn’t wait for morning to
come so I could see my baby. Over the
next few days Hayley fought very hard.
We sat next to her every moment that
we possibly could and talked to her
so she knew that we were there. Each
day she was stabilising more and more,
not as quickly as the doctors had hoped,
but that was just Hayley’s way. I really
believe that the days that I sat with
her the longest, were the days that
she improved more. She was such a good
little girl. I know she wanted to be
here, and she tried so hard to stay
with her Mummy and Daddy.
I am really sad that I didn’t take as
many photos of these few days. I guess
I still wasn’t letting myself think
that we weren’t going too bring her
home.
Friday the 1st of June came.
Today Hayley was going to have her shunt.
We got up really early and went straight
to PICU to sit with her before she would
go in for her op. She looked so beautiful.
She was awake when we arrived and she
was looking straight at me. Due to her
being on so many different things during
the week, she was asleep most of the
time, so to have her awake when we got
in there was fantastic. I took some
beautiful photos, which at the time
didn’t realise how precious they would
now be. During the night her nurse had
done her foot prints in a beautiful
card for us, which I am so thankful
for, but I wondered at the time if they
knew something that we didn’t.
At 7.30am it was time to take her to
the big doors for her surgery. We kissed
her goodbye and told her that Mummy
& Daddy loved her so much and we’d be
waiting for when she came out. I am
so glad that every time we had to leave
her side, even if it was just to go
to the toilet, we always told her how
much we loved her. It was so important
for me to make sure she knew.
She had looked so well that morning,
so we were really positive that everything
would go well. We waited down stairs
in the café until they called to say
that she was out of surgery and that
we should head up to the waiting room.
After a while her surgeon came to see
us and said that her heart was worse
than they had 1st thought
and that the next 24hours would be tough
for her. We were devastated. Why was
everything against us and our beautiful
little girl? She really didn’t deserve
to have to go through this. It was just
so hard.
We were allowed in to see her after,
what seemed like forever and all I wanted
to do was to cuddle her but we couldn’t.
My poor little baby girl. It just wasn’t
fair.
The doctors continued doing her hourly
stats and everything looked like it
was gradually improving. We sat with
her until just after 2:20pm and we decided
to go and have a little lye down as
we had had very little sleep and it
was going to be a long night. She was
looking ok so I thought if we just went
for an hour it would be ok.
I will regret that decision for the
rest of my life. Just after 3pm my mobile
rang and it was the PICU nurse. What
she said I will never forget. “Hayley
is not doing to well, you better come
back.” I burst into tears, with panic.
I woke Jason and ran over to her ward,
while Jason locked up the rooms and
ran over after me. I have never run
so hard in my life. When I arrived,
I buzzed the door and said it’s Hayley’s
Mum and they let me straight through.
I ran through that corridor and through
the doors. When I got in there all I
could see was doctors all around Hayley.
They were everywhere. The alarms were
all going off, and when I pushed past
everyone, there was my beautiful little
girl. I will never forget her beautiful
little face. My poor little girl. One
of the intensivists was trying to resuscitate
her, while others were trying different
things to save her. I could feel her
pain so much. It was like part of me
was dying. They tried to resuscitate
her for about 22 minutes, but it was
just to much for her little body. At
3.22pm on Friday the 1st
of June 2007 our beautiful baby girl
Hayley passed away. I cried so hard
that it physically hurt. I can still
feel how hard I was holding my stomach
when I think about it now. I was so
sad for my little girl and so sorry
that she had to go through it all. All
we had wanted was for her to be ok and
to bring her home, like she was meant
to.
They took all the tubes out of her and
unhooked everything so that we could
hold her. We held her so tight, I just
could believe that it had happened and
cried so hard. I never wanted to let
her go. The only good thing that I could
see now was that at least she would
never be in pain again. I kept telling
her how sorry I was and how much we
loved her. I like to believe that she
was there still and could here us. We
sat with her for hours until she had
to be taken down stairs. Walking out
of the hospital that night was so hard.
Part of our life had ended in there
that day.
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Each day that followed was so
tough. We started planning Hayley’s
funeral. There were so many
decisions to make. We went to
the Centenary Memorial Gardens
to find a place to bury her,
but while we were there I just
couldn’t bare the thought of
her not being with us again,
so we decided to have her cremated
and bring her home with us.
We chose a beautiful spot in
the Gum Nut Garden with all
the other babies to have her
memorial plaque, that way there
was still a permanent record
of her. Her funeral was
going to be a celebration of
her life, and it was just that.
It was beautiful. At the start
of the day the lady from Metropolitan
Funerals brought Hayley home
for us. It may seem strange
to some people, but it was something
that was very important to us.
We needed to know that Hayley
knew where her home was and
we had wanted to bring her home
so much. In a way I got my wish.
I had hoped to have her home
before our Wedding Anniversary
on the 8th of June,
but I obviously wasn’t specific
enough about that wish. On the
7th of June, the
day before our anniversary,
we finally had her at home before
her celebration in the afternoon.
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So
many people came. My brother did a slide
show of her beautiful photos to some
special songs that we chose for her.
One Sweet Day, by Maria Carey and Boyz
II Men, Turn Back the Hands of Time,
by R. Kelly and Angel by Sarah McLachlan.
We wrote her a letter that the celebrant
read for us. It was a beautiful celebration
of her life. We released 13 butterflies,
one for each day of her life on earth
and 2 of our very good friends organised
50 hot pink balloons to be released.
We
named a star in honour of “Our Precious
Baby Girl – Hayley Alana” and it is
called just that. It is in the Southern
Cross.
It
all happened 2 ½ months ago. In some
ways it just feels like yesterday, and
I keep expecting that if we drove to
the hospital that she would be there
and that this is just one very bad dream,
but then reality sets in and it feels
like so long ago.
Having
our beautiful little girl taken from
us was the hardest thing that we will
ever have to face, and our lives will
never be the same again. We love her
so very much and will miss her everyday
for the rest of her lives. I still say
goodnight to her every night and tell
her how much we love her. I know that
she can hear us. I just wish so hard
that we could have her back.
Through
this journey we have met so many wonderful
people, who we never would have crossed
paths with if we didn’t have Hayley.
Something
that I read when I first found out about
Hayley’s condition that has definitely
proven to be true, is that we planned
and set out for a trip to Italy and
we ended up in Holland. It is still
a very beautiful place, it is just different
to what we planned. That is how I look
at our little girl. We had hoped and
prayed for everything to be ok, but
we had to take a different journey.
The saddest thing is that we never wanted
it to end.
I will never regret
our decision to have Hayley. She deserved
every chance at life, we are just sad
that it was so short. She was worth
the fight and she has changed our lives
forever, because we are her Mummy &
Daddy and we love her so much. I can’t
wait to have little brothers
and sisters for
Hayley. They will always know about
there special Big Sister in Heaven.
A few weeks ago, we went back to the
Prince Charles to find out her final
diagnosis. Hayley had Pulmonary atresia,
intact ventricular septum with absent
coronary artery origins. She really
was a little miracle, to have survived
as long as she did!!
August 2007
We love you Baby Girl. xxxx
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