Today while I visited Tyler we were able to watch as he had a thorough ultrasound of his heart and lung area. The machine that was used to do this was big and stood at the end of his cot and as the scan took place Tyler's eyes darted back and forth, he looked very unsure. I felt very helpless watching the uncertainty in his eyes; my calming words seemed so useless.

Another reaction I noticed Tyler made while in Melbourne occurred during the frequent suctioning out of his breathing tube. As Tyler's body was still overproducing mucous this needed to be removed to help him breathe easier. Tyler really fought against this intrusion and before they suctioned him out they had to administer Valium to calm him down.

*****

What was I experiencing beside Tyler during this time? I certainly had to keep reminding myself that he was just a baby. Tyler was facing things that no adult would want to face and doing it all without any explanation from anyone as to what was going on. It was not like I could sit down before his ultrasound and tell him what was going to happen. He would not understand words as such, not as an older child would, I don't know if that was a good thing or a bad thing. Probably a good thing for him because he didn't know what was going to happen next, but for me it was hard because I did and I couldn't knowingly reassure him.

At least when a parent tells an older child what is going to happen they can also remind the child of their presence, and the child can respond to mum or dad.

But I didn't have the privilege of any such response. Of course Tyler would have been comforted by my presence because I had seen him react to me but there was no way to know exactly how Tyler was best comforted because he was unable to tell me. And we all learn pretty quickly that young baby's cry when they want us to know they are upset. But what can you use as a gauge when your baby can't cry. And how do you stand by and watch without any comprehension of what Tyler could be feeling? Believe me my thoughts flew wildly in all directions and when this happened it was really scary.

Some things just couldn't be fathomed and it was better to just cope with the immediate than delve into the indescribable. To remain sane I really had no choice but to leave Tyler in God's hands and believe that God was taking care of him.

It was certainly the only answer for coping with the disturbing realities of Tyler's illness; all the agonizing in the world did nothing to relief Tyler or myself of anything.

I guess one might ask "But how can you just hand it all over? It comes with practice, and as most of us are at the end of our rope when we give it to God there really is nothing left for us to do but let go.

You see I was feeling it like any normal mother of a child because physically I was saying "I can't take this God, I can't accept this God, I don't understand this God". But I was also able to say "I know you've allowed this, I have seen your presence with me and I believe you love Tyler and I".

My knowledge and understanding of God counteracted the hurt and frustrated side of me so that I just reached out for Gods hand instead of slapping it away. To find comfort I had to believe it was there in the first place and then I had to take hold of it.

To understand my reaction you must first remember that I had been in that place with God before and that handing myself over to him had become something of a second nature.

It originated back when my relationship with God first started, when I discovered how different my life was when I allowed God to take charge. And again I experienced the difference of handing God my problems when my worn-thin marriage brought me to desperation point and nobody else could give me any help.

So being in Melbourne beside Tyler was really no different; again I was finding myself feeling totally unhappy with the way things were and not being able to do anything about it. Handing it all over was just really letting go to God as I had already done throughout my life.

*****

Because Tyler's chest was so full of mucus the ultrasound didn't give the kind of information that the Doctor's needed to diagnose what was wrong with our baby. So they told me that a Cardiac catheter had been scheduled for Tyler on Monday morning. As far as I know it was a procedure that had to be done in a surgical theatre and involved threading a fine flexible tube up through an artery or vein into the heart. This enabled the medical team to explore the blood flow and pressures in the heart and to look for any abnormalities. It was said to be a risky procedure for Tyler to endure but they believed it to be necessary.

When I heard the word risky I just sighed, hadn't everything been risky up until now.

Again I entrusted Tyler to God.

It was God who had allowed Tyler to survive his birth, be revived from death and handle the trip to Melbourne, and I knew God would enable Tyler to get through this operation. Trust seemed all I had.

*****

During our day we alternated between visiting Tyler and spending time at the house. I know I was not as dedicated as one set of parents whose child was also in Intensive care. Their son was called James; he was between 2 and 3 years old and was unconscious and attached to all sorts of monitors. His parents were always beside their son but I have to admit they really looked very fatigued and completely drained.

I loved Tyler but I just couldn't stay sitting beside him day in and day out. I suppose getting up and down, transferring between hospital and home and keeping Talitha occupied were ways I kept my mind off what was happening. Regular short visits are how I coped but I often feel guilty that I didn't make myself stay beside Tyler the entire time.

In ICU there was two other long-term patients (stayed more than two or three days) as well as Tyler, one James and another girl who was brought in after Tyler. She was probably about 10 years of age and arrived very flushed and restless; I knew nothing of Tyler's roommates' conditions or reasons for being in ICU. Apart from smiling and acknowledging the other parents not a word was said to each other.

I am not a great one for introductions to strangers but I will look for ways to be kind or help them out. It's not that I want to remain standoffish its just that I find it difficult to start conversations.

Tyler remained in ICU the whole time he was in Melbourne.

*****

It was Saturday and I had to do some washing so while it went through the machine I snoozed on the couch and Talitha watched a video.

Later on we sat down and had our evening meal together. Preparation of our meal was no easy task because the kitchen was very hectic when half a dozen families were all trying to prepare their dinner at the same time.

A few people staying in Ronald McDonald house asked of our situation and we learnt their stories as well. One lady I met was from Port Fairy and had a 15-month of baby who was in remission from Leukemia. Because her child's immune system was still so low her daughter was susceptible to germs and minor illnesses. Her mum had been keeping her upstairs in her bedroom away from other residents, if she bought her downstairs the baby would sit in a pram covered by a plastic cover. This lady had three other children at home and stayed in Melbourne for months at a time; she was looking forward to finally getting home again.

Most people seemed to stick to themselves.

*****

Tonight Tyler's oxygen level was sitting on 60% and it was very comforting seeing him tolerating my breast milk being tube fed to him. Theses two effects though small and not medical breakthroughs were very encouraging to me. Remember Tyler had never been able to tolerate this low a percentage of oxygen in Darwin and he had been there for 6 weeks. And he had never been well enough to continue ingesting my milk as milk needs to broken down in the stomach. The staff in Darwin had always said that Tyler had been too ill, to have the energy required to handle digesting milk on top of all the other problems his body faced.

I know that when I later told these new developments to Justin it was sign to him that Tyler was getting better. Justin had rang me from Broome to tell me that the family has safely arrived and said that Mum, Dad and Keanu were due to fly out in the morning.

*****

Today is the 1st of June and it is Tyler's 55th day of life. Every day is very precious to us and Talitha and I feel at home here in Melbourne. We are used to getting up every day and making our way across a busy street to the hospital. We know the route to Tyler's room very well and make sure we wash our hands thoroughly before stopping at the toy cupboard where Talitha chooses a toy.

We also know the way to the place where I sit in a private room and express milk for Tyler; Talitha has even made a friend who plays with her while she waits for me to finish. I know how to clean and sterilize the equipment ready for Tyler's milk and enjoy knowing I am doing something for my baby. It is a tedious procedure and I don't really get much milk but I keep at it.

Back in ICU and we sit down in our chairs beside Tyler, the room is very warm so warm in fact that we often strip of our jumpers. Tyler is most often awake and it is hard to do anything else but look in his eyes. Talitha talks to Tyler and holds his hand; she knows how to treat him and looks forward to seeing him every day. She doesn't ask many questions she is familiar with what she sees and often chats away to the nurse and I.

Today I noticed a thick red strip that encircles the entire floor around Tyler's cot; I have never noticed it before. I also noticed that the nurse disappeared from time to time; the entire time Tyler has been in hospital he has had a nurse beside him continuously.

Being my normal reserved self I said nothing, but a Doctor in passing must have read my confusion and stopped to see me. He said the red line indicated that Tyler had an infectious disease that's easily transmitted. It was expected that all who came into contact with Tyler must wash their hands before and after touching him. He did not tell me what the infection was or where it had come from.

That red line really hurt me, it implied that my child was some sort of leper. I didn't complain that wasn't my thing but it affected me deeply, it was about this point I begun to feel like the hospital gave up on Tyler.

*****

I have to say that as I type my story the atmosphere around me and the events occurring to me are influencing how I write. Perhaps that is meant to be I can't say, but I believe that everything that happens is for a reason. And if anything that happens to me reflects on my time with Tyler or helps me to write this with more depth I will include it.

Just recently Justin and I were watching the Good Friday Royal Melbourne Hospital Appeal which occurs every year. To see the same hospital and see the same place where Tyler was brings back many memories. And Justin and I were able to open up to each other and it brought back emotions and feelings for both of us.

We both agree that the staff and hospital do a wonderful work and help an amazing amount of children. But we don't recognize the same care and dedication given to Tyler as is shown on the TV. We agree that Tyler received much more devoted care from the staff in Darwin.

In Melbourne Tyler received the appropriate amount of care a child of his condition would receive and unfortunately once a diagnosis was made the level of care dropped.

And we also come to the conclusion that we as parents didn't receive complete empathy from either Darwin or Melbourne hospital staff - but that does not include every staff member or all situations because certain things happened to us in both hospitals that we know were incredibly caring.

What we feel is expressed as an overall generalization of all we experienced.

*****

A few things I noticed in Melbourne were that Tyler didn't get given a dummy, and the staff didn't do physio on him. One nurse explained to me why Tyler didn't receive physiotherapy and that was because the Consultant in charge of ICU didn't believe it was necessary. She said she didn't agree but because this man was in charge he had the final say as to what treatment patients in ICU received.

Now I'm no expert but I think it strange that a personal opinion should override what could be considered as necessary for better health. And I wondered if perhaps this should be something that parents are given the information about so as to make their own judgement.

It appears to me that parents need to have prior information about procedures if they want to follow and be aware of what is best for their child.

But how can parents know what is and what is not available for their child or what is best or better not done unless they are told. I certainly was not told anything unless I asked, and how can I ask if I don't know to ask. I probably failed Tyler in that prospective because as far as physiotherapy, I went no further but to put the question to a nurse. I would hate to imagine having to go up against a Consultant in charge demanding Tyler have physiotherapy. Again I was made to feel inferior because I was lesser informed; maybe all parents feel this way I don't know.

I talked even less with the Doctors' in Melbourne then I did in Darwin, I really don't know why either. Perhaps I was supposed to be present when they did their rounds or I was supposed to make an appointment to speak with them, or maybe Doctors' just didn't converse with parents that way.

I can think of only a few occasions that I actually spoke to a Doctor and it was never the same one. In fact I don't even remember any names of Doctor's in Melbourne at all. Most information was gotten through the nurses.

And I only once saw a hospital chaplain and I didn't see any social workers until the final days of my stay in Melbourne. For such a big hospital I can only guess that perhaps there was far more need than trained staff available to deal with it.

Unfortunately it hasn't left me with the greatest respect for the Melbourne Royal Children's hospital as far as support for the parent goes. I can only say that I am aware of the enormous amount of technology and resources the hospital has to offer but I didn't personally experience a great deal of it while I was under its care.

*****

Tyler had his cardiac catheter on his 56th day of life.

I was told that I wouldn't be able to see him for quite a few hours so I decided that it might be good to organize something for Talitha to do while we waited. I'd read in a pamplet about a program that ran within the hospital that cared for children during the day.

But first I had to find it and I traipsed through corridors and along passageways until finally locating the Sibling care center. This was similar to a daycare center and was available for brothers and sisters of patients within the hospital. It operated from morning until afternoon and even provided lunch for the children.

It felt strange leaving Talitha but I made sure I stayed for awhile to allow her time to settle in. The center was well equipped and had plenty of things for children to do as well as a great outside area for them to play in.

Talitha only stayed from 9 am until 12 noon and I didn't take her back again because I needed her company beside me more than she needed to play. I think the staff guessed at my anxiety about being without her because I kept popping in to see how Talitha was doing. And believe me it was some distance from ICU and I was kept breathless just going back and forth through the hospital.

The whole time Tyler was in surgery I just walked to and fro within the hospital in a sort of daze.

When I was finally able to be with Tyler again, he didn't appear any different but his skin was very pale. His eyes were still bright and I don't know what I'd expected but he appeared good to me after having come out of surgery.

Tyler's nurse agreed with me and said that the staff was also surprised at how well Tyler had come though his operation.

One man, who was sitting writing something at a transportable desk asked if I'd heard the outcome, I said no. He said nothing further to me and not long after a woman came and asked that I follow her. Naïve as I was I did, thinking nothing as usual. Now that I look back I see the subtle messages.

This woman said nothing as we followed her through the hospital, I had no idea where we were going or why we expected to follow. I was taken goodness knows where, up a few floors in a lift, along passages and taken to what seemed like a Doctor's waiting room. I was told to have a seat, but not before being moved again to another waiting room and then finally being ushered into a private Doctor's office. I did note that I was going in ahead of a room full of people.

As I was introduced to a Doctor it did finally start to sink in. As this Doctor, probably a heart surgeon or something important like that (I can't remember), began to tell me the extent of Tyler's problem, my own heart began to quicken within my chest.

He had a plastic model of a heart and used it to explain why Tyler was having trouble, apparently the veins leading from his heart to the lungs were narrow and constricting blood flow, which led to problems oxygenating the blood.

I was relieved at what he said because for so long we had known nothing about what was causing Tyler's problems and he was answering so many questions. But as he continued talking the extent of Tyler's illness drained any relief away and it felt like the ground was going to open up and swallow me whole. Tyler's problem was not just one vein but all of them he said; and it wasn't just that they were narrow, some were constricted almost completely. The Doctor concluded by saying there really was not anything they could do for Tyler.

As my heart had already hit the floor I was not really able to comprehend what my response should be, but surprisingly I did cut straight to the point when I found myself saying " So what your saying is Tyler has to be switched off then?"

The woman who had said nothing up to this point instantly seemed to find her voice and appeared to jump to the Doctor's defense when she said "That's not what the Doctor is saying, let's not focus on that now."

To me there really was no other way to look at it and as I struggled to come to grips with what this meant, it seemed that my whole world stood still.

In one sense I was aware of the many diplomas and documents on the walls surrounding me proclaiming this mans brilliance and in another sense I was faced with the cold hard fact, that even being in a world renowned hospital meant nothing to Tyler.

I don't recall either what the Doctor said from this point or how our consultation ended. I just remember taking Talitha's hand and numbly following the woman back to the Intensive care unit.

I didn't go straight to see Tyler because I was shown to a private room, given a box of tissues and allowed the use of a phone. I can't even recall if Talitha was with me or not, I really was in a total state of shock.

I didn't use the tissues but I did use the phone to call Justin and then I called my parents in Ballarat.

I just told it like it was what else was there to say; at the time I had no comprehension of what it all was going to mean for our family. The only thing I knew was that I couldn't stay in Melbourne alone that night and asked my parents to come and get me.

I believe the Lord was upholding me because the numbness I was feeling wasn't allowing me to focus on anything but the immediate moment in time. I was not overwhelmed by everything but it did seem my body had suddenly gone into autopilot. I can only surmise that my spirit was being carried my God.

*****

I told the nurse who was looking after Tyler that I was going to stay in Ballarat with my parents for the night, she said that it was understandable that I wanted the support of family around me.

Of course having to leave Tyler was not what I wish I had done; but to have stayed would have broken me. Some have said I was cutting myself of from Tyler, knowing that he was going to die and trying to come to terms with that. If that was what I was doing it was not something I did knowingly; a lot of what I did from this point I had little control over.

I know that I never returned to see Tyler without the thought of death staring me in the face. But to see Tyler with his beautiful eyes wide open was just too much of a paradox, to me he just seemed so alive. I think it was this that I found hardest to come to term's with - Tyler was alive and could wake and sleep, he was finally taking my milk and he needed such a less ratio of oxygen. Death just didn't fit in with what I saw when I looked at my son.