18/4/97

Taken from a scrapbook.

An emotional, roller coaster sort of a day.

This morning we were confronted with a very negative report of the previous night, Tyler's condition had worsened.

At Intensive Care Level we can only understand what we see, grasp onto what we are told and any suffering seems magnified. When the nurse is holding back tears it tends to leave you thinking the worst.

I have been very positive today, Justin had a tough time of it, but he admits that the escaping tears brought a lot of relief.

We contacted families more for prayer than any other reason, because we knew such news bought much anguish to those who were listening.

I feel guilty about these phone calls, did I overreact, worry needlessly; this is the sort of emotion that threatens to engulf us both everyday. What to feel, what to expect, what to admit, what to tell our families, we are both overly sensitive to people's reactions around us. Yet will be as critical about it all, when all's said and done. I am void of energy; I can't shake feeling drained and headaches reveal the tension of waiting, but waiting for what?

Despite everything Tyler seems to be responding to us. His eyes opened onto Justin yesterday, and today I saw them trying to. It's as if he's trying to tell us "I'm still here, I haven't given up!

A fax from Fitzroy Hospital arrived telling us that the whole staff was thinking of us, this really made us feel special, as if it was all worth something.

Psalm 27 verse 14

"Wait for the Lord, be strong and take heart and wait for the Lord."

Psalm 28 verse 7

"The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy, and I will give thanks to him in song."

*****

Early this morning two notes were sitting on the table beside my bed; both reminders that my Mum had called, apparently she had been trying to contact me since the night before. Often in our comings and goings we would miss phone calls or during shift changes messages would be delayed getting to us. This meant that I was not surprised to find such notes either left beside my bed or passed on to us in Special Care. I fully understood that it was not the nursing staffs' responsibility to run around after me and thought it very decent that someone had left these notes without waking me up. I always found the nursing staff extremely thoughtful and caring, even though I was not a patient.

Unfortunately we had missed calling home the previous day and Sebastian our oldest child had been very disappointed. Even before going over to see Tyler, I returned the call and made sure I spoke to Sebastian.

At home the family was going out for morning tea to Auntie Pam's place, Auntie Pam being a close family friend and someone we visited regularly whilst living at Fitzroy Crossing. Pam and Glyne Cranwell have three children, Timothy, Alicia and Jonathon. Taking on the role of Auntie and Uncle for each other's families has brought us closer together, a closeness we can miss out on because we live so far away from relatives.

Of course I had no idea yet of how Tyler had gone during the night. Even after missing a day of contacting family, it was difficult not having any new information. I promised that as soon as I had any news that I would ring and let the family know.

*****

Later on, when I returned to my room after visiting Tyler, (Justin had not been in yet) I collapsed onto my bed. My eyes flooded with tears, I could no longer hold myself together, I didn't understand what was happening to Tyler and my heart felt like it was going to break.

A knock on the door made me start, and I was surprised to see (Chief Registrar) Dr Diploc, one of the Doctors caring for Tyler in Special Care Nursery, coming in thorough the door. I composed myself a little, but he could clearly see that I was upset.

As he reached out to comfort me unfortunately he tripped, falling onto the chair. The strange thing being that he kept introducing himself and talking to me as if nothing had happened, no excuse was put forth to explain his clumsiness or remark made to lighten the situation. This attempt by Dr Diploc to conceal his humanness struck a chord within me. Even though I continued to listen carefully to what this Doctor was saying, all I could really focus on was - Doctor's fail too. This realization helped divert my attention away from what the Doctor's were unable to do for Tyler; despite the lack of answers I was being given as to what happened the previous night.

Instead of my tears turning to desperation, God allowed human weakness and my lack of understanding to soothe my anxious heart because I now was reminded that God was in control. This realization bought with it a calming affect and I was able to visualize Gods hands directing all our paths, especially guiding the hands and minds of the medical staff as they worked with Tyler. This renewed hope.

It may sound funny to you, but this Doctor did more to help me by falling and revealing his humanness, then by anything he could say.

I was reminded to place my trust in God and all because a Doctor stumbled!

*****

Two hours later, with Justin beside me, I was on the phone again to Mum asking her to pray for Tyler. Mum promised to contact our Christian friends in Fitzroy and our home church in Mt Clear Victoria (the church I attended when I live or visit Ballarat, and my parents' church.)

This church has a prayer chain that operates for special prayer requests from members or anyone that has a need. One phone call is made to one of the participants and then they pass on the request to the next person and so on. In a matter of 15 minutes up to 12 or more people would be praying. I could also rest assured that Mum would be passing on our news to anyone she met, it was a great relief and comfort to know that we didn't have to contact everybody and we knew many people would be praying for us!

After talking to Mum, I did leave the phone feeling a little deflated. Mum who couldn't see what was happening was confused and full of many questions. It was very difficult because I could not give her any answers.

Up till now there had been no explanations or any diagnosis for what was causing Tyler to be so sick. All I could tell Mum was how Tyler looked and pass on to her what little information the doctors had given us. Whilst Justin and I could find out anything to do with Tyler's treatment or ask questions about his reactions, we were not given any explanation as to why. I found myself fairly accepting of what little was known, Mum struggled with it. Talking about it all and questioning what was going on, fed any fears and left gnawing doubts in what seemed inadequate intervention up to this point.

What I did know was that Tyler was very fragile, whenever he was touched or moved even a little, his oxygen levels dropped dangerously low. There was no way I could pick him up as he was. Since the previous night Tyler was receiving higher levels of oxygen at around 70%.

Tyler was to continue having bad nights, in fact it became an up/down struggle for him most evenings. As this was the first time it was understandably a shock for everyone, including the Doctors who were baffled by everything that was going on with our baby.)

*****

Justin moved into the YWCA house on Friday afternoon, this was the best time of day to do any necessary activities that involved being out of the hospital. Seeing as between the hours of 1pm and 3pm the Special Care Nursery had a rest period when the ward shut its doors and the curtains were closed. Parents were never discouraged from entering but would be asked to respect that our babies also need a quiet time.

The house was only about 5 minutes walk away, and fortunately another father and daughter had moved in. Justin's housemate would be Rob and 2 year old daughter Sam. Rob's wife Janelle, who was still in hospital, had given birth to a son Tom who needed further treatment before returning to Nhulunbuy NT.

The house had 3 bedrooms each lockable; the rest of the house was used on a share basis. A pay phone, linen, washing detergents and even a cupboard full of food was provided.

Lorraine the house manager met him and explained all the details, it was expected that Justin sign a contract and pay all monies up front. It would cost him $140 a week, plus any extra food or personal expenses. All that was expected is that Justin and Rob water the lawns, put out the bin once weekly and as Lorraine popped in and out every couple of days; any concerns were to be jotted down in a exercise book which remained on the kitchen bench.

I should have had a sleep while the ward closed its doors for rest period but instead I sat and wrote a couple of letters to family and friends. Using the letters to vent how I was feeling and to share my son with someone outside of the hospital.

*****

We were beginning to recognize a few familiar faces on our regular trips down through the elevators and out to the front of the hospital; Justin being a smoker always seemed to be coming and going. I nearly always followed after him, so we easily got to know the layout of the building. On our regular trips if we didn't take the stairs, we sometimes played a guessing game as to which elevator would open first, 1, 2 or 3.

One old man with a heavily bandaged foot, whose leaning post seemed to be just outside the front of the building, now smiled and acknowledged us each day. In fact the front entrance seemed to be a congregating place for a great deal of people, it was a very busy place indeed!

A favourite stopping place was the cafeteria, across a walkway directly opposite the front entrance. Justin is an avid Diet-Coke addict so first stop would either be the drink machine or a stop at the shop. Cream doughnuts were a favourite and then we'd find an unoccupied spot away from other people. If we didn't want to stop outside for too long we'd sit on one of the front seats directly outside the hospital, or sit on the pavement cross-legged with our backs against the wall. If we felt like a different view, we could sit on park benches that overlooked the playground or choose from a variety of seats, some totally surrounded by palm trees.

It was important to us that we have as much privacy and distance from other people, and especially to be out of earshot of hospital staff. Having a nurse so close at all times made it difficult to discuss private or personal matters; sitting beside Tyler we always made small talk. Outside the hospital walls we valued our freedom to discuss everything together and conversation came easily. It hasn't always been that way.

*****

Justin and I first started going out in 1988 when he was only 17 and I 18 years of age. Since those early days we have had a very up and down relationship. Justin and I have very different natures and very little in common.

We have completely different views on most things, and many times our differences have blown apart any chance at good communication together. As our married life has progressed we sometimes seem to be drifting along on very different wavelengths. To be honest quite a few times during our marriage I have contemplated being separated from Justin. I never went through with it but at these fragile times I could see little of us left to salvage.

I have always liked to talk about everything and Justin doesn't, he gets angry if he feels crowded and I feel rejected if I can't share what I feel. This has created a vacuum of unresolved emotions and pent-up frustrations. Because Justin is often unwilling to listen to me at all, I unfortunately try to force myself upon Justin because I want to get things worked out straight away. This inhibits Justin who likes space and then Justin loses his patience with me. It can be a rather vicious cycle.

Where I have found forgiveness helps me to move on, Justin has not been able to resolve his emotions as easily and after blowing up will stew on things. I strongly believe that God has always pulled us back together, and given me a greater love for Justin; this compensates for times when I despise him. A harsh thing to say, but because we have very different ways of dealing with things we can clash and that makes for strong feelings.

I have included this written account about our marriage relationship because there was so much of a remarkable difference in how we related together during Tyler's illness. It has to be included so that the change can be appreciated. God alone is the only answer to our situation. Because of his faithfulness and gracious love, I have come to accept the unacceptable and I can still find meaning and joy in our marriage despite our imperfections.

**During the whole period of time that this story is based upon, I can honestly say that Justin and I had a strong and very supportive relationship. I don't remember any arguments or bad feeling coming between us at any time. It always seemed that only one of us struggled; the other always kept the balance. Justin's whole attitude was totally in tune with mine, he was extremely thoughtful and attentive to any needs I had. I don't believe I could have gone through what happened as I did without Justin's presence and total support. I can't imagine what it would have been like to have depended on our past relationship as an anchor in a time such as this.  Something like this could have broken us and strained our marriage to breaking point; instead we came closer together. A whole load was lifted from our shoulders; God knew we needed each other and helped us to be totally dependent upon each other. Praise God! **

*****

During the times when I was alone in my room, I found comfort from a Walkman stereo that Justin bought me from a Cash Converters store.

I have always appreciated and enjoyed listening to music; I can escape into the lyrics or be moved by the rhythm and power as it soaks into my soul. If you were to ask my children they know all to well that while doing housework mum either sings or bops along to the stereo.

While in the hospital I had to restrain myself from singing aloud to my favourite songs; I am not confident enough to let others hear.

I suppose I could have sat beside Tyler more than I did; I often would for awhile when Justin left in the evening. I know I always tried to keep Justin at the hospital for as long as I could. Having Justin with me helped because he was a distraction to the obvious suffering and injustice being lived out in Tyler. Eventually though he would have to leave.

When I did stay alone with Tyler, I'd just sit alongside my son taking everything in that was going on around him. Every so often I would glance at zigzagging lines forever making their way across a monitor. I would stare at drips being sucked down endless plastic pipes and while watching the continuous bleeping of the heart monitor, become mesmerized by the flashing neon light.

From time to time I would gently caress Tyler's head, the obvious place to touch because there was nothing attached to it. I would softly speak in his little ear, saying his name, telling him little things about his family and assuring Tyler of my presence and my love for him.

Tyler's little bed seemed to be a breeding place for plastic tubes and various devices, which were strategically placed in any vacant parts of the cot. Rolled up cloth nappies were used to prop up Tyler's breathing tubes and were also used to help support Tyler's arms or legs from the pressure of multiple drip connections. His little arms or legs would be supported on little flat cushioned splints, and then his limbs would be wrapped in bandages which hid the needle and paraphernalia that goes along with it. Every limb would be either hooked to something or visibly tender, recovering from a previously removed drip. It was obvious from the mass of bruises left on Tyler's skin and the bloodied needle pricks on his heels that it took numerous attempts to secure a good vein to inject into. I often had to focus on a little finger or toe because I couldn't bear to look at any more painful sites and contain myself.

It was explained that Tyler's veins often collapsed from over use, which was why the staff changed sites so frequently. One way to obtain a longer lasting vein was to use a long line, this required threading a very narrow tube delicately up into a vein. With the tube inserted up through the vein and secured, it increased longer use of the vein.

Tyler was starting to have a nappy placed under him because the catheter kept popping out. His body was losing muscle tone in some places, while in other places his body was swollen and puffy from being in the same position.

Tyler was turned every four hours; it seemed a big procedure just to get him into position. His head was the most difficult to settle because there were only a few ways that his head could lie without having trouble keeping all the tubes in place. Whilst turning his body someone had to manually bag him with air while a nurse supported his head and carefully shifted his body onto the opposite side, at the same time making sure all the bits and pieces attached to Tyler were not dislodged.

The staff seemed to love using bandage type tape; this was used to strap up his breathing tube. A wide strip of tape was stuck across Tyler's nose and cheeks. Underneath it was a type of wax strip, and this enabled easier removal of the tape while protecting his skin. This tape which had such an important role also left its imprint most hideously on my person. Tyler's lips and nose were pulled out of shape so that his face was left distorted. It was ugly and impinged on Tyler's appearance. It was hard to continue watching his face, not because it was distressing but because Tyler looked so defensive. I could easily have ripped the tubes from his face, picked Tyler up and carried him away. I didn't like what was happening to him and I felt totally hopeless and inadequate.

It could easily have devastated me seeing my baby son like this; especially since there was nothing I as a mother could do to protect Tyler. If I wanted to continue being beside my baby I had to find a way to see beyond the pain and suffering and view Tyler differently. If Tyler had to live in this debilitating condition and I was forced to watch him endure it. I had to trust that God was in control and could provide a way for me to stay beside Tyler without being engulfed by all that was happening.

This did happen but it was very strange.

*****

It was not by my inner resolve that I started to endure things differently. I don't even know when it began to occur, I did not control it, all I know is that when I thought I couldn't cope any more, I suddenly found my strength renewed.

My calmness was the result of an inner spirit who interceded when I could not go on. When this spirit took over it felt like I was stepping backwards, and when this happened what I was seeing seemed to filter through eyes that could view things very differently.

While everything I am telling you is true, how that I have suffered from the natural feelings and desires of a mother going through this. When I was beside Tyler's cot I was remarkably peaceful and even when viewing Tyler's struggle this inner spirit seemed to absorb all that I was viewing and I could not dwell on any anger, fear or pain.

I know that this state of mind was simply God taking over; I hated seeing all that was happening. It was Gods spirit that enabled me to feel as I did, his spirit that was shielding me from everything.

Instead of seeing a sick, defensive baby trapped inside a deformed body, I was given a glimpse of Tyler's spirit and he was alive!

*****

On Tyler's 12th day of life, I finally left the hospital for the first time; Justin took me shopping at Target. Before leaving I informed the nursing staff in both Maternity and Special Care, making well sure that our mobile number was written down in case the hospital needed to contact us. Everyone seemed pleased that I was going out and I felt encouraged by the concern.

I was very adamant that we must return before lunch was dished out. It was very strange walking out the front door and getting into the car after so long being solely an inmate of the Hospital. I felt like I was escaping and any moment someone was going to pull me up and say "get back inside to your baby". The car was warm and familiar, it felt good to be free but at the same time I felt like I was deserting Tyler.

Driving around the streets was overwhelming because I had no idea where I was going; Justin of course was becoming familiar with the layout of the city and was proudly pointing out things to me as we passed them by.

As we shopped, we were ever listening out for the mobile phone to ring.

*****

It is hard to describe what we were both feeling. Our emotions were on a roller coaster ride because the slightest change, a wrong interpretation of what someone said, a few positive words or different opinions from various people could change our whole mental state. We constantly swung from one emotion to another.

One moment we were on a high, a positive comment providing us with so much hope of taking Tyler home and the very next moment a negative comment could cause us to tumble downwards to facing the possible death of our child.

In these early days we discussed it all, including the what ifs. What if Tyler had to stay on oxygen and receive treatment for a long period? How would we cope in Fitzroy Crossing? What if Tyler didn't recover? What if Tyler stopped breathing? Would we want him revived? What if we were asked to donate Tyler's organs? The questions just kept rolling around in our minds.

We touched on the subject of death and what it would be like to face our baby son dying. We discussed how death had already affected our lives. We talked about Justin's stepfather Russell who had died in 1991. Russell had raised Justin for the majority of Justin's life.

Justin opened his heart and shared how that he would gladly give his life to spare Tyler, Justin felt very helpless. As a father his role in life was to protect and provide for his family, he could do nothing to spare Tyler from any of this.

We talked about my sister Belinda's death; and what had happened to my family, especially how Mum and Dad had coped when they faced the death of a child.

It did become crazy; there were questions such as who'd suffer worst and what we'd tell the children if Tyler died. Everything that we were told was analysed over again and again. One of our big fears was that the Doctors were hiding something from us. Not because they knew what was wrong and weren't telling us everything, but we feared the Doctor's were not confident in their treatment of Tyler.

*****

One of the biggest challenges we faced every day was our daily consultation with the Doctors, who were our only source for answers to Tyler's health.

A Doctor fixes the sick; they don't specialize in communication skills. I don't think they were necessarily the best people for us to rely solely upon. Unfortunately liaison between the hospital and us as parents left a lot to be desired. Not because of the information we were being told but it concerned how it came across.

Apart from our daily talks with the Doctor on duty, where we could ask any questions and so forth, all the rest of our information was picked up from bits and pieces we heard throughout our day.

These were things such as "it's all going to take a long time" or referring to Tyler's progress "2 steps forward, one step back." These sayings were typical comments we would hear from a lot of the staff, but they didn't make sense because they didn't seem to fit Tyler's situation. As far as we knew, the Doctor's had no answers to Tyler's condition. Yet we figured if such generalized comments were being made, there must be some idea as to what was happening to Tyler.

I realize that it was not the nursing staff's job to tell me answers to Tyler's health but I didn't like that they couldn't be more specific in their answers. The nurses did not seem to be freely able to comment on any diagnosis with us, yet what they said didn't fit with what the Doctors were telling us.

At this point in the story, we were pretty naïve and not very forthright in putting our concerns about Tyler to the Hospital. But then the Doctors certainly never said anything to reassure us that Tyler was going to live or die or even recover. We didn't know what to expect, we didn't know how Tyler was supposed to be treated, remember we weren't allowed to compare Tyler with other babies on the ward. We had nothing to go on; no yardstick to follow, and this chipped away at our confidence at asking the right questions.

You may ask, why didn't we simply pour out hearts out to the social workers or to Pat the Chaplain. Probably because we didn't know we could and because we didn't know how to voice what we thought.

If I ever questioned one of the nurses as to Tyler and what may happen they would always tell me to ask the Doctor when next we saw him. If we didn't understand anything staff would always page the Doctor to come as soon as was possible. This tended to make us incredibly nervous to ask questions, if the staff felt it necessary to page the Doctor even when we had already talked to him previously that day. We would think, oh no what is it, why do we need to speak directly to the Doctor, it must be worse than we thought.

Sometimes it was better not to ask because when you did see the Doctor he said nothing different anyway.

I understood that the Doctors had no idea about what was affecting Tyler and that it was not possible to predict exactly what would happen. Tyler was baffling them; his lungs were oxygen deprived, constantly changing but not improving.

Around this stage we started to be extremely aware of what we said around staff because we feared what might be passed on.

During a previous visit with Tyler when Justin and I had made a comment (not a question) to a nurse it resurfaced during a conversation with one of the Doctors. We felt uncomfortable that our conduct was being observed, and it wasn't a pleasant experience. I realize that the nurse involved was probably concerned about how we were coping because we weren't giving a lot away, (we did not ask a lot of questions) but their obvious scrutiny caused us to keep even more of our opinions to ourselves.

Please understand that I greatly respect the Doctors and all they were doing for Tyler and especially the nursing staff who were extremely dedicated to making Tyler comfortable. But we suffered because the hospital was not showing understanding towards our situation. They failed to realize that if they were struggling to come up with answers, then surely we were even more in the dark then they.

Not once did we know what the Doctors expected.

I remember standing beside Justin one time; Dr Adrian was standing opposite of us on the other side Tyler's cot. Dr Adrian had just finished filling us in on Tyler; we hadn't put many questions to him as usual. Dr Adrian continued to stand looking at us as if he was expecting us to ask something; it was not that there was any thing we could add or point out that we didn't understand. It was just that I felt that this Doctor probably would have said more if only we'd asked. How can you breach feelings when you have no evidence to support your claim?

Our confidence in Tyler's health and well being was so uncertain that we even wondered if Tyler would one day just disappear from his cot. As if his very life rested on what we ourselves were struggling with; as Justin and I tried to come to some understanding it seemed something was happening to us all.

Of course Tyler was always there when we returned, his condition the same as usual; but we always felt very differently.

This difference also extended to the moods of staff around us, their attitudes changed as did their outlook. There was at times a very visible and noticeable difference in the treatment and whole atmosphere surrounding Tyler's cot.

It was clear that Tyler's struggle was personally affecting more than only Justin and I.