It had a been a typical pregnancy for me. Nausea, crying, vomiting – while keeping smiling for our two little girls and counting the days till I would feel better.

We decided not to follow that [medical] advice …

By 19 weeks, I was coming out of the fog and we went for our routine ultrasound. Once you have had this ultrasound done a few times you kind of get the hang of what they are looking at and why.

The sonographer fell silent, took a long hard look at the baby’s head and then announced that she needed to get the doctor. God in his great kindness gave us ten minutes to wait for the doctor.

In that ten minutes, [my husband] Marty and I had a chance to talk through the ‘what ifs?’ What if there is something wrong? What if it is just minor? What if it is fatal? And we also had time to pray. In that room before the doctor came in, we asked God to help us to trust him no matter what we were about to find out.

It was a prayer we had prayed before, through a number of challenges together – and God had always helped us.

The doctor came in, had a close look at the baby and then delivered the shattering news that our baby girl had a condition that would prove to be fatal at birth, if not before. At this point we were told that people in our situation, of course, induce labour and end it all then and there.

We decided not to follow that advice and went home to get our heads around 20 more weeks of pregnancy, the impending death of our daughter and how on earth we were going to tell our children, our parents and everyone else who had been so excited with us about this baby.

Our grief began that day. In fact it was probably one of the two most traumatic days of my life. I remember walking out of the ultrasound feeling physically sick. I remember the tears just spilling out of my eyes and my husband’s which was a scary and new sight for me.

We sat down in the foyer on a well positioned sofa until we could gather ourselves to head home.

The reality [was] that there was absolutely nothing that could be done to change the outcome.

Walking through the front door meant facing reality – I had to tell my mother who was babysitting. We had to tell our children their much anticipated baby would never be coming home from the hospital but … we could tell them with great certainty that their baby sister would be going from the hospital to heaven.

We have most areas of medicine covered in our extended family but we did have on hand all the doctors we needed to help us fully understand the diagnosis – and the reality that there was absolutely nothing that could be done to change the outcome.

After these medical calls, we called our parents, siblings and close friends. Most cheered us on in our decision to carry on with the pregnancy, some told us that they could never do what we were doing and some actively tried to persuade us to change our minds. All of them loved us and had only our best interests in mind.

Our dear three-year-old Abbey asked if God was going to take her there in the pram. These were big concepts for little children to get their heads around but we spoke to them with complete honesty about everything that was happening.

That first night, we went to bed utterly exhausted and in disbelief. I remember a physical pain in my stomach that I had never felt before.

We opened our Bible to Psalm 139 and read:

“For you created my inmost being

You knit me together in my mother’s womb

I praise you because I am fearfully and wonderfully made

Your works are wonderful

I know that full well

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth

Your eyes saw my unformed body.

All the days ordained for me were written in your book

before one of them came to be.”

We took great comfort in this psalm. Here the author of the psalm was telling us so clearly that God had created our baby’s inmost being. He’d knitted her together in my womb, she was fearfully and wonderfully made (despite her awful prognosis); her frame was not hidden from God. His eyes saw her unformed body and all the days ordained for her were written in his book before one of them came to be!

Her life was not a life cut short but a life that was going to be lived to completion. Without a doubt, this passage of scripture gave me the confidence to trust in God’s plans for this baby.

Our decision was made – we were carrying her to the end, so it was time to get on with life as best we could.

Zoe means life; Elizabeth means devoted to God.

We wanted to name the baby so that we could refer to her by her name for the short time she was going to live inside me in this world.

When you have been a primary school teacher, naming your children is …. a more difficult task. We wanted a name that we liked for this precious little one but also a name with meaning. We came up with Zoe Elizabeth – Zoe meaning life; Elizabeth meaning devoted to God.

It’s funny what you fixate on when you are in a grief-stricken state but one thing that I was determined I wanted to communicate to the world was that Zoe had lived. She had had a life. It was to be a short 40-weeks-in-utero life but a life in this world, none the less. And then there was life in heaven – she was going to have that to the full.

Marty and I were both high fiving when we settled on Zoe. Zoe was perfect.

The pregnancy continued slowly because I hate being pregnant. It also went fast because the due date was looming and that date was filled with dread and sadness for us.

Zoe kicked around in my belly just as the others had and I was absolutely determined I was going to enjoy every movement. And enjoy it I did. I really loved watching my belly grow and cherished every little move.

The 40-week mark came and went and we had come to a deal with my doctor that I would go in the day after my due date. The night before we were due to head to the hospital we sat on the couch after putting the kids to bed and opened our bible to Ecclesiastes 3: “There is a time for everything and a season for every activity under heaven: a time to be born and a time to die.”

Again we prayed together – we thanked God for her life, a life that was about to be born and about to die. And we thanked him for the gift she had been for that short time.

She arrived alive. We watched, we waited, she kept breathing …

We popped a small bottle of Moet. Moet for Zoe. We toasted our daughter and braced ourselves for the day ahead. It was a long day ahead … in fact, it took the whole of the next day and into the early hours of the one after – June 21, 2007 – for Zoe to arrive.

She arrived alive. We watched, we waited, she kept breathing, so we called the children and grandparents in to meet her. They came and later went home, as we still watched and waited. The minutes grew into hours and the hours grew into days and the days grew to a week and the hospital started talking about sending us home. That was never part of the plan. Well, not part of my plan but, as it would seem, it was part of God’s.

When she was 11 days old, we took her home to a house completely unprepared for a newborn but thanks to our church community, we wanted for nothing. In fact, I had three prams delivered and much more flash ones than I had had for our other girls!

When Zoe was one month old, she had outlived every other child ever born with her condition. The months became a year and we celebrated her first birthday! We were stunned – as was her medical team – and just so thankful. She was still very unwell, she did not meet many milestones at all and life was hard for her and us. But she was our precious girl and precious gift who was here to be loved and cherished. And that she was.

She turned two, then three and then four. She spent lots of time in hospital and I became great friends with every doctor and nurse on the children’s ward at Royal North Shore in Sydney. Every time Zoe got sick, we knew that it could be the end.

I will always find it hard to answer the question: “How many children do you have?”

In July 2011, pneumonia struck again. As I walked out of our house with Zoe in my arms ready to take her to the hospital, for some reason I stopped on our front doorstep and I said to her if you don’t come back here Zoe, we are so thankful that you came.

At 5pm that afternoon, lying her in her father’s arms, we told her it was OK to go and prayed that prayer one more time: God help us to trust you today and always.

And He took her home. And her hard little life in this world was over.

Four years and 39 days she lived in this world – God had it all planned since before the beginning of time.

He also prepared a room for her in his house and I am completely confident that life is better by far for her there – it’s just hard for us here because we have to do life without her.

We miss her every day. There will always be a hole in our family photos but, more importantly, in our family. I will always find it hard to answer the question: “How many children do you have?”

If I was God, I would have planned it differently but I do trust in his perfect plan. He has kept answering our prayers. We do trust him.

We grieve with hope because we take comfort in his promise in the book of Revelation that, in the world to come, he will wipe away every tear and there will be no more death or mourning or crying or pain, for the old order of things will have passed away.