Josh and I headed to Adelaide leaving our girls with our good friends
in Tennant Creek who offered to look after them while we went to
learn what might happen at and after the birth. Once in Adelaide we
settled in to The Greenway Apartments just across the road from the
hospital- this was soon to be our home away from home the next time
we arrived in Adelaide.
We were contacted by the Maternal-Fetal Medicine/ Antenatal Diagnosis and
Counselling Service Coordinator atthe Women's and Children's hospital. She had
arranged all ourappointments for our time there and would be our point of
contact from then on.
Bec the Coordinator was kind and caring; she had a soft voice and really
seemed to understand what we were going through. These were our
appointments whilst in Adelaide; some went well and had positive
results others were like being in hell!
17/3/08 @ 9.30am
2nd opinion USS +/- amniocentesis
Women's Ultrasound Department
Here we met Dr T who pretty much gave us the same opinion as the
2nd doctor in Alice Springs. This was disheartening; however he
could talk us through all the options available to us in Adelaide as we
had decided to keep the baby. He was concerned about the size of
my stomach and we found out there was a lot of fluid around the
baby, which he was concerned about and also made me very
uncomfortable- I was huge at this stage! He arranged to do a
 |
| me (after 2 litres of fluid removed) still looking the similar size to the balls in rundle mall!!! |
 |
| Josh with beautiful adelaide in background |
18/3/08 @ 11.30am
Fetal MRI scan
Paediatric US Dept
An MRI scan was the last thing I wanted to do. But for my baby I would do
anything. I hate being in enclosed small spaces, let alone the size I was , lying
on my back for what felt like hours. My belly was nearly touching the top of the
machine, I was crammed in so tightly. I kept my eyes shut so I didn't have to
notice how small an area I was lying in..
18/3/08 @ 2.45pm
Paediatric Rehabilitation appointment
This was the worst appointment we had in my opinion. I sat in the chair next to
Dr. M's desk and just cried- I was a mess. I couldn't look at him as he was
describing what physical abnormalities and limitations my baby would
have again, if she survived. Josh was asking heaps of questions, I got to the
point where I just wanted to get out of there. I understand he needed to tell us
exactly how he thought it would be based on other cases and research but he
was so blunt. Didn't he realise I was her mother; she was still alive inside,
listening to all this negativity?
At times I think doctors need to experience things themselves so they know how to tell parents bad news.
I will never forget how I felt in this appointment.
The interesting thing is, after feeling that way in March, come April I ended up
liking this Doctor, he visited us in PICU when he heard she was in the hospital,
and I must say he was shocked. I was honest with him and told him she proved
him wrong- he agreed. By the time Mia went to the ward he was the one who
took over her care.
I trust this Doctor immensely now and value his opinion. I know he had
to put things as he saw them- thats what we went to Adelaide for- to
hear what might be from the experts. But as a mother, it is hard to hear
and accept those views. He still took care of Mia when his team flew into
Alice when we lived there for check ups. Recently, I caught up with him and
again we discussed that first appointment- he too remembers exactly what it
was like and how much of a mess I was and how I was lucky to have my
husband there.
19/3/08 @ 11am
Paediatric Neurosurgery appointment
I never made it to this appointment as I ended up in emergency! I had
2 litres of fluid drained from my stomach, this made me feel lighter and
I had less of a waddle as I walked. On the way to our next appointment
I had to stop as I had contractions, they were painful, I couldn't walk, I
started crying and found the closest table to lean on whilst Josh went to
find a nurse. I was warned that this could happen as a result of the
procedure, but we had to go through with it in a hope that it would
postpone early labour. A nurse came with a wheelchair and off to
emergency I went whilst Josh went to see Dr E by himself. After a while
my contractions eased and I was allowed to go. I couldn't imagine how
I would cope if they didn't ease and I gave birth that day- our baby
would have had a very slim chance of survival then.
19/3/08 @ 2pm
Neonatology appointment
I really appreciated how Dr. J put the situation to us. He understood it had
been tough so far listening to Doctors tell us negative situations. He on the
other hand just chatted with us about our 3 other daughters, our work and
what our thoughts were in general.
We discussed organ donation, as this is something Josh wanted if she didn't
survive, but he said this doesn't happen with babies' organs.
He put things to us simply- " we will know at birth which way to go as Mia will
tell us. There are 2 paths she could take; if she comes out crying/screaming
like a normal baby then we pursue treatment and surgery. If she doesn't
and seems to be struggling to breathe on her own then we will make her
comfortable and let her go. " This is what we needed to hear as we had
already decided that it wasn't our right to end her life.
He also made me feel positive and that I could do this role as a mother of a
special needs child and that our 3 daughters would be the best physios our
baby could have.
Of course I cried at this appointment too but I left feeling okay about things,
although there was still the issue of a funeral deep in my mind.
19/3/08 @ 2.30pm
Maternal Fetal Medicine appointment
Women's Outpatients Dept.
Here we just caught up with Dr. T again and talked about dates of
needing to be in Adelaide incase I go early. We summarised everything
that had been told to us over the few days, how we felt, any issues or
questions etc. It was a very full on and emotional few days. I was glad
to be going home to get back to work and normality where my baby
was just like any other, floating around, kicking me, making me
uncomfortable and not letting me sleep.
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