Time went by quite quickly when we came back to Tasmania, but it was very hard with Madeline in ICU and myself and John having to travel to and from Melbourne every week.  We just had weekends together.  It was better on Emily though (then 21 months).  The things that we found difficult were things like Madeline was 9 weeks old and hadn't even had a bath. We had never held her without tubes etc. When she was around 9 weeks old she went to 7 west (wow) this was her 2nd time, the 1st time she lasted a week, this time she lasted 5 nights. At this stage she had spent 946 hours fully ventilated.  She was so tough.  She was having difficulty tolerating her milk up on 7 west, and then it appeared she was getting an infection, so back she went to ICU.  I always felt so much safer with her there though.  I'm not saying the staff weren't any good on 7 west, but they knew her so well in ICU didn't they.  Madeline's lung had also partially collapsed at this stage, they thought because she aspirated the milk (it went to her lung) instead of her belly.

On the 30th May 2003, Madeline had more surgery to get the fluid off her lung, it was a very delicate procedure we were told, but Dr Christian Brizard was happy with the surgery.  He also told us they were going to do Madeline's BCPS (2nd stage surgery) early.  She would be 10 weeks.

Madeline's BCPS surgery happened on the 5th June 2003.  It was my week in Melbourne and it was a very hard day. They took her around 10.00am .Surgery went well, but took longer than expected due to severe chest adhesions from all the previous surgeries.  She didn't return to ICU until 5pm, I was beside myself. As I was flying back to TAS on Friday the 6th I wanted her very stable to leave her.  Anyway, she was really behaving herself and I flew home.  The plan being John would return on Monday.  Maddie had other ideas though, we received a phone call from ICU at 4.20am Saturday morning (I'd only just flown home) saying Madeline had had a cardiac arrest. (Talk about stress). Anyway, her heart never actually stopped beating and they got her back to a stable level very quickly.  By 8am she wasn't as stable as she was at 5am, so we all flew back to Melbourne (john, myself and Emily).  We wanted to see our baby.  When we arrived she was really good, looking around, looking at us.  My Dad from Hobart also flew over with us as he had never seen Madeline.  Madeline was now on her best behaviour of course and we flew back to Tas that evening at 8pm. My Dad stayed the night. Maddie had an excellent night, and was also good and stable the following morning.  However on the Sunday at about 1pm, things deteriorated and they found a blockage in the left side of the heart in the pulmonary artery.  She had to be taken to theatre and open her little chest back up to see what was going on.  My Dad was waiting while she was in theatre.  She got through the surgery.  The blockage was not as bad as it may have been, there was something compressing the artery rather than something in it.

John flew back the following day (Monday), she was very stable, still ventilated but taking things slowly with her. She had a fairly steady week.  The following two weeks I got really sick, and was not well enough to fly, so John went over 2 weeks in a row. During this time she had another infection and was battling. 

When I went back to Melb, I could not believe my eyes (I had not seen her for nearly 3 weeks) when she had the cardiac arrest.  She had lost a lot of weight and I was very upset.  They had been restricting her fluid etc as too much was making her heart work too hard and around and around you go. Her sats were good, but I was very worried about her and it broke my own heart to see her so thin and sick.

I spoke with one of the Drs in ICU and he said to me that Mad was really struggling and the only option was for another operation to repair a leaking valve or possibly replace it.  He told me though that the surgeon didn't want to operate, so it would be kinder to stop treatment possibly.  This stunned me, why was I only being told this now.  Anyway a meeting was set up to talk with the surgeon and all her drs etc.  This however wasn't until the following day so I spent 1 and a half days thinking my baby was going to have to die.....I had to ring John and tell him this...not good.

I had the meeting with the drs and the surgeon said I HAVEN'T' GIVEN UP ON HER YET, I CAN OPERATE......YEAH WOW I WAS SO HAPPY I COULD HAVE KISSED HIS FEET. So, off she went the following day for another operation.  Dr Brizard said Maddie was the worst HLHS he had ever seen, but also one of the toughest.  He thought around 80% chance of coming through.  The operation took 7 hours. Another difficult day. This operation happened on the 25th June.  I flew home on the 27th June.  She appeared stable and ok over the weekend and they were weaning the ventilator.

 

When John flew back on the 30th June Madeline's ventilator rate was down to 0.  We had no idea of what was going to happen the next few days.  John was told by one of the nurses that the doctors wanted to meet with him.  Sister Di the chaplain asked John if he wanted her to go with him.  He said no as he thought maybe they were going to organise sending her back to our Launceston hospital here as she appeared to be going well etc.. The meeting took place at 1.00pm on the 1st July.  When John got there one of the Social Workers was there and instantly alarm bells went off in his head.  He wished he had said yes to Sister Di now.  Nothing could really prepare him though for what would follow.  In came all the Doctors and Surgeon and they all sat down.  Dr Brizard appeared very upset.  He said to John I'm sorry but the operation I did last week hasn't worked.  Madeline is very sick and she is NEVER going to get better. The kindest thing to do is stop treatment.  Imagine my poor Husband having to hear that on his own.  Anyway at 1.30pm John rang me and told me.  We had also just bought a house and were in the middle of unpacking etc and also waiting for settlement day for that.  The owner had given us the keys so we could move in but it hadn't settled.  It ended up settling the 2nd July 2003.

After, John rang me I was on the phone straight away to get myself and Emily to Melbourne.  I flew out of Launceston at 3pm.  How I ever did it I don't know.  John and Sister Di met me at the airport around 4.15pm.  When we got to the hospital Madeline was really deteriorating and her sats were all over the place as well as her blood pressure, the staff were worried I wasn't going to get there in time.  Anyway, I did and we decided that the treatment would stop the following morning if she got through the night ok.

We stayed at rydges hotel down the road as our parent accom was only a single room and we all wanted to be together.  At around 8.30am Wednesday 2nd July, we were at the hospital and she had been moved into a private room.  One of our favourite nurses was looking after her and had made her a special dress the night before to wear.  Another wonderful Nurse, also came in even though it wasn't her shift and was with us.

 

John had never held Madeline until this day as he hated all the wires tubes etc and had thought as we all did that she would get better and he could hold her like a normal baby.  Anyway, he held her for a fair time still with the ventilator attached, then I did.  Emily was with us for some of the time and then a volunteer was organised to take her to the starlight room.  Madeline was taken off the ventilator at 10.30am while John was holding her, he held her for a fair while then I did and she died in my arms at 11.10am on the 2nd July 2003.  It was sooo sad but very peaceful for our baby.  She was nearly 15 weeks old.  She had endured so much in that time, all of it because everyone thought she'd make it.  She's now at peace.