30 June 2010

Preparing Our Hearts

God began to gently prepare my heart day by day for the premature birth of our baby. He was merciful, leading us through different stages so that we were not taken by surprise when the painful end did come.
One of the stages was the gradual deterioration of my health.
In early March, I was admitted to hospital with a very high blood pressure reading of 170/110. I stayed in hospital for 5 days and began taking blood pressure medication. Two weeks later I was back in and my dose was increased. Once discharged, I visited the hospital twice a week for monitoring. My blood pressure did not remain stable and my medication kept needing to be increased. It was getting to a stage where my health was at risk. I felt very unwell - I was extremely fatigued, had shortness of breath, nausea and vomiting. I found it difficult to accomplish much at all.
Trisomy 18 had effected the development of the baby's placenta which in turn effected my blood pressure and health.
Our baby's health was also declining. Each ultrasound showed that her growth rate was deteriorating. At her last ultrasound she was nearly 5 weeks behind the growth rate of a healthy baby.
Our hearts were being prepared to face the inevitable end.

28 June 2010

Finding Giselle

Trisomy 18 was a mystery to me, I had never heard of the condition before our baby was diagnosed with it. I therefore spent hours on the internet researching and reading other people's stories.
One of the most helpful sites I came across was the American Trisomy 18 Foundation website. It contained information about T18, people's journeys and struggles, legacy/memorial pages and answers to a variety of questions. The section I found most helpful was the Community Board. It was a place where people who were having a baby with T18 or had had a baby with the condition could connect, relate and help each other.
One night while I was browsing through the Community Board I came across a post that truly amazed me. It read,"I am pregnant with a baby who has T18. Is there anyone else in Perth who is having or has had a baby with T18?"
I couldn't believe that this question was on an American website! Were they referring to Perth in Scotland, Tasmania or WA I wondered? I had desperately wanted to connect in some way with someone who was travelling down the same road that I was, but because T18 only occurs in 1:3000-5000 pregnancies I wasn't necessarily expecting to connect with anyone from Perth! I tentatively replied to the post and eagerly waited for a reply.
I met Giselle in early February - I was 19 weeks pregnant and she was 22 weeks. Unbelievable! Equally amazing was the fact that she was a Christian too. Being able to share our journey in the light of our faith was such a blessing, we were on the same page.
God was so good in the way He brought us together. It was truly amazing how it came about. Despite the difficulties and uncertainties of our situation, God was there for us, caring for us and providing what we needed.
"And my God will meet all your needs according to His glorious riches in Christ Jesus. To our God and Father be glory for ever and ever. Amen." Phil 4:19-20

27 June 2010

Caught Between Two Worlds

Returning to our story. Continuing on from the post - "The Hardest News to Break."

Our grief slowly began to transform into hope and everyday we held tightly onto it. Hope was what picked us up after those devastating phone-calls and gave us the motivation to carry on.
Our hope was firmly connected to our faith. We held onto the hope that our baby may be able survive this condition (for how long, we did not know). Looking back, hope was very important to us, it helped us to keep going. How do you go on living day to day with a life growing inside of you without hoping that a miracle could take place? It would have felt like we were giving up on her. It was a confusing time for us - we were 'grieving' yet no one had died and we were 'hoping' even though we were told that there was no hope. We held onto hope but grief was still part of our everyday lives. We had lost the 'joy' of having a healthy pregnancy and a healthy baby.
Sixteen weeks into the pregnancy we went to visit the hospital's chaplain. He was a lovely man. One of the first things he said to us was, "Remember - your baby will always be 'your daughter' and she will always be your 'fourth born child'. This will always be so."  Hearing that was a great comfort to me, this was fact and it could not be taken away from me. But not all the chaplain had to say that day was comforting. During our discussion on faith I asked him if he thought there was a chance that our baby could live - to this he answered... "No." What? Are you serious? No hope? The carpet was swiftly ripped out from under me. No, please don't take my hope away from me! What am I to think now? The chaplain however was simply telling me the truth, and I began the painful journey of accepting reality. But where does that leave me now? What do I pray for? Hope for? It was all so painful. Oh my darling baby - what does this mean? 
I confided in a good friend about the roller coaster ride of hope and reality that I was on. What was I to do? She suggested that I hold on to 'small hopes' - one step at a time. Yes, that sounded reasonable. My first hope was for my baby to live past the 20 week mark. Babies born after 20 weeks gestation are registered by law and receive a birth certificate. It was important to have my little baby recognised as having been here, a part of our lives and a part of this world. Yes, little hopes were going to be better than no hope at all.
However, despite all our hopes, dreams, struggles and grief we ultimately knew that the end result rested securely in the hands of the Creator of Life. All we really needed to do and could do was - trust.

24 June 2010

Forever Our Girl

Child of mine
His princess
Remembered always
Loved immensely
Tiny baby
Treasured memories
Enhanced our lives

Resides in heaven
Our heart's desire
Engrafted into our family

We will forever cherish the 7 months we had with you.
We are honoured to have you as our daughter.
You will always remain in our hearts and in our thoughts.
We will always love you and miss you.
You will forever be 'our' girl.

God bless you our darling Charlotte Rose
as you live and dance in the courts of heaven.

Until we meet again...

All our love forever Mummy and Daddy xxx

23 June 2010

Love From Daddy

My Princess -  Charlotte Rose,

Our fourth child and our second beautiful daughter.
I was so excited to find out that we were having our fourth child.
I love being a daddy and spending time with my kids.
I was looking forward to you being part of our family.  
I know that one day we will be together in heaven.
You looked so beautiful, so tiny. I miss you so much.
I love you Charlotte
Love Daddy xx

22 June 2010

Sibling Thoughts

Mikayla's Thoughts:
The things that I remember about Charlotte are:
*that she was cute
*that I held her
*I had photos taken with her
*I met a man (the hospital Chaplain) who talked to us about Charlotte - about her birth and her sickness.
*Putting flowers in her grave
*Lighting 6 candles at the Church

*I miss not having a sister, I have always wanted one.

*I remember being told that Charlotte had died.

*I think Charlotte is having a wonderful time in heaven. She has never sinned.

*Jesus chose to take her to heaven. I don't know why He chose to do that.

*Charlotte, if I could say anything to you, I would say that I hope you are having a good time and I miss not having you here in human land.

Ethan's Thoughts:
The things that I remember about Charlotte are:
*Holding her after she died
*Seeing her all wrapped up
*Looking at her in her cot
*That we buried her
*That we put rose petals in her grave

*I miss not having 3 girls in the family, we would have had 3 girls and 3 boys. I miss that she is not going to talk to me and I will not know what she sounds like. I will also miss that she can't play with us.

*My favourite memory is when I saw Charlotte.

*I think Charlotte would be playing with other babies in heaven, she would be having crawling races. She would also be playing with baby puzzles and books. I think she would be able to talk because she is in heaven. I think Jesus would talk to Charlotte and say, "Please think about your family."

*I feel sad that Charlotte isn't here. I realise that I want her here.

*Jesus took her to heaven because she was sick.                                                         

*If I could talk to Charlotte I would say, "I love you."

Jesus said,
                                "Let the little children come to me, and do not hinder them
 for the Kingdom of heaven belongs to such as these."
 Matthew 19:14

21 June 2010

The Grief Journey

having to face circumstances out of your control
not having or getting what you wanted
longing for times past and futures lost
pressing the pause button on life
life continuing without you
unwelcomed change
unwanted goodbyes
having empty arms
profound sadness
broken hearted
comes in waves
silent suffering
buried dreams
aching heart


tender mercies
everlasting life
my hiding place
His everlasting arms

"Only the presence of God can fill and satisfy our emptiness. Lord, open our eyes that we may see beyond the realm of flesh and blood; strengthen the hands which hang down, and the feeble knees, and make straight paths for our feet." Grief and Grace - A. Axelby

Because of the Lord's great love
we are not consumed,
for His compassions never fail.
They are new every morning;
great is Your faithfulness.
Lam 3:22-23

20 June 2010

I Wonder...

I wonder my darling who you would look like?
Would your eyes be blue like Daddy's or green like mine?
Would your hair be long, blonde and flowing?
Would it be curly or would it be straight?
Would you be tall, having long fingers and feet,
or would you be small and dainty and petite?
I wonder...

I wonder sweetheart what you would sound like?
Would you have been quieter like Daddy or chatty like me?
Would you like the quietness of a gentle breeze,
or the crash of waves on the beach?
Would you talk quietly and often be shy,
or would you be confident, willing to give anything a try?
I wonder...

I wonder my love what your tastes would be like?
Would you love lollies like Daddy or curries like me?
Would you be passionate about music, literature or sport,
or would you find your enjoyment serving others?
Would your gifts be in leadership, would you serve or direct?
Would you prefer to listen to others, their lives quietly effect?
I wonder...

I wonder my girl what would delight your sense of smell?
Would it be yummy food like Daddy or beautiful fragrances like me?
Would you love flowers and the strong smell of roses,
or would you prefer the salty air and taste of the beach?
Would you like cooking with spices, enjoying food flavoursome to eat?
Would you prefer lemon meringue, pecan pie or anything sweet?
I wonder...

I wonder Princess what you would love to do?
Would you love sport like Daddy or making things like me?
Would you like to play an instrument, sing or perform
or would you like to study and learn new things?
Would your passion be to explore the world and visit other lands?
Would you be content staying at home and creating things with your hands?
I wonder.....

All these things I wonder and more... but this I know!
You are my daughter
You are a child of God
You were created for God's good purpose
And were meant to be
You reside in heaven
You were made for eternity
You are loved and contented
And one day, all this and more I'll see...

All my love forever sweetheart, Mummy x

19 June 2010

Your Name

Your Name

I speak your name
My eyes well up
My heart aches
For you can never answer me.

I hear your name
It catches me
Makes me stop and pause
I know it's not your face
I will see.

I see your name
I am filled with wonder
I am filled with love
I know you are with me
You know you are loved

Your name
As beautiful as you
As special as you
Music to my ears
Even with the pain
Even with the sadness
Because you are mine
And will always be.

by Sherry
from: stilllife365.blogspot.com

18 June 2010

My Loss

"You are worthy, our Lord and God,
to receive glory and honour and power,
for you created all things, and by your will
they were created and have their being."
Rev 4:11

    In memory of Charlotte's due date (38 weeks)
for 18th June 2010

 I Lost
My baby
My daughter
My pregnancy
My fourth child
The joy of pregnancy
The joyful anticipation of delivery
A baby to hold and love
The privilege of meeting her
The opportunity to take her home
The chance to introduce her to family and friends
Time to watch her grow and develop
The joy of witnessing her milestones
The chance to discover her gifts and passions
-her character and personality
The opportunity to show her that she is loved
The pleasure of knowing her
Our future together
Part of my family
Part of me

"Come to Me, all you who labour and are heavy laden, and I will give you rest."
Matt 11:28
"And can it be that in a world so full and busy, the loss of one weak creature makes a void in any heart, so wide and deep that nothing but the width and depth of vast eternity can fill it up!" Charles Dickens

17 June 2010

Lost Dreams

birth                       -----                death
newborn                 -----                perinatal loss
wonder                   -----                devastation
joy                          -----               immense grief
fulfillment              -----                aching emptiness
contentment           -----                lost dreams
cuddles                   -----               empty arms
amazement             -----               disbelief
hospital                  -----                morgue
visitors                   -----                alone
midwives                -----                perinatal loss midwives
doctor                     -----               doctor, social worker, chaplain
demanding cry       -----                silence
feeding                   -----                tablets to stop the milk
soft skin                 -----                cold skin
studying features   -----                taking photos
cooing at baby       -----                crying
addition                  -----                absence
bonding                  -----                amputation
home                      -----                cemetery
company                -----                 isolation
community nurse   -----                 funeral director
bassinet               -----                    casket
dedication              -----                 funeral
putting to bed        -----                 burial
future                     -----                 end
hope                       -----                hope
faith                       -----                faith
love                        -----                love

"And we know that in ALL things God works for the good of those
who love Him, who have been called according to His purpose."
                                   Romans 8:28

"Sometimes when one person is missing, the whole world seems depopulated."
~Alphonse De Lamartine

"He has sent Me to heal the brokenhearted ... to comfort all who mourn ... to console those who mourn ... to give them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness ..." Isaiah 61:1-3

16 June 2010

Facing the Due Date Without You

A Week to Remember

This Friday 18th June...
I would have been 38 weeks pregnant
I deliver my babies at 38 weeks
I was expecting my baby to be born this week
This week is very significant to me
I dedicate all my posts this week
~My Baby Girl~

I'll love you forever,
I'll like you for always.
As long as I'm living,
My baby you'll be.

15 June 2010

The Hardest News to Break

12th January 2010 - 15 weeks
Three weeks after our initial ultrasound we returned to our obstetrician to have a second scan. It was wonderful to hear that our baby was still with us. We had decided to wait until after this ultrasound to tell our children about the pregnancy. We hadn't told them earlier as we needed time to process the situation and get a handle on our own grief.
I joined the T18 Foundation website where I read about how other parents had broken the news of their T18 babies to their older children. It was very helpful.
13th January 2010
We sat our children on our bed and I drew a picture of a dress pattern. I explained how a dressmaker uses  patterns to make clothes and how they would end up looking a certain way depending on the pattern they had chosen. I went on to explain that we have a pattern (DNA) too, given to us by God, which works in a similar way to a dress pattern. The pattern God gives us determines what we will look like and be like.
Our children were listening carefully. It was now time to break the first part of our news....
"Mummy is having a baby." "Uh." They were so surprised they spent the first minute trying to work out if it was a joke. After a little bit of convincing there was great excitement. Mikayla commented that she would really like a sister while Ethan began talking about the baby's 1st birthday and what toys he could give them from his toy collection. Time for the second part....
After reminding them about our God-given patterns, I went on to explain that our baby had something wrong with their pattern - that it was a bit mixed up and this meant that they were sick. I told them that because the baby was sick, we were unsure if the baby would be able to come home from hospital with us. The pieces of the puzzle were falling into place for Mikayla as now she understood why Mummy had been staying in bed and crying. She said to me,"Mummy I thought you would die from crying so much."
We decided not to mention the possibility of our baby dying at this early stage. One step at a time. Over time more of the story would naturally unfold. We wanted to be truthful but gentle.
The kids were still upbeat over the news that I was having a baby. We were concerned that they hadn't understood what we had said, but they were able to retell us everything almost word for word. It was a beautiful example of child-like acceptance. We decided together that we would pray for our baby's healing.

"Having other children keeps you going. You can't hide away if you are caring for other children."
Grief and Grace - A Axelby

14 June 2010

Why Didn't You Tell Us?

"Through all of this, they experienced also the normal side of pregnancy: the nausea, the cravings, the anticipation, the movements, the expanding waist, the doctors appointments and the questioning eyes from others. By this stage normally they would have told everyone that they were expecting, but what do they tell them now? What are they to say when they are still trying to understand it themselves? Energy is at a premium during these times and so slowly they had energy enough to share their pregnancy news, but understandably not enough to go into all the intricacies of the challenges they were facing. So because of this, it wasn't widely known that while they were expecting a baby, they were also expecting a loss of a child." (Taken from Charlotte's eulogy, written by Heather Crane)

Many people naturally questioned whether I was indeed pregnant. Some asked, others didn't and were left wondering. Our baby was very small so I wasn't as big as I normally would be for my dates so some people didn't even realise I was pregnant at all. But as Heather said - What were we supposed to tell people now? "Hi I'm pregnant but it's not good news. Our baby is not expected to live." For us, this news was extremely devastating and we could not communicate the enormity of the situation in a brief conversation. The 'joy' of sharing 'good news' was gone.

Rejoice, and men will seek you;
Grieve, and they turn and go;
They want full measure of all your pleasure,
But they do not need your woe.
Be glad, and your friends are many;
 Be sad, and you lose them all - (mmm, probably not all :)
There are none to decline your nectared wine,
But alone you must drink life's gall.

Ella Wheeler Wilcox
taken from Grief and Grace by A. Axelby

Naturally people dont want to hear bad news as readily as they would good news. Ever so slowly we began to share with friends our sad news. Often people would congratulate us before I could get to the next part. At times, I just accepted the congratulations and left it at that. I didn't have the emotional energy to tell everyone everything. We also didn't tell many people that our baby had Trisomy 18 - we were concerned that some may look it up on the internet and get an inaccurate picture of our baby. We wanted somehow to preserve her integrity. You may ask: "But didn't you want people to pray for you and your baby?" Absolutely! We had a core group of people praying for us and our church pastors were also informed.

"This.... speaks a hard truth, but one we might as well accept nonetheless: pain is harder to share than joy." - William J Bennett - The Book of Virtues

13 June 2010

A Beautiful Portrait

At 18 weeks we went to have an anatomy scan/ultrasound. We actually had an ultrasound with each obstetric appointment to see how our baby was developing. It was always such a relief to be told that she was still with us. Because she was so small it would take longer than normal to feel her kick and move so an ultrasound was the only way we knew that she was alive. It was lovely to see our girl move and see her heart beat, she looked perfectly normal to us. The doctor even said to us that if he didn't know what he was specifically looking for in terms of T18, she would look quite 'normal' to him also. Out of approximately 30 physical indicators that doctors look for in babies with T18, our baby appeared to have only 6. 6!! That sounded like good news! The only physical sign that would be noticeable to us was that a couple of her fingers crossed over each other when she opened her hands. The most serious problem was a heart defect which unfortunately affects most babies with T18. This particular heart problem was operable in 'healthy' babies after they were born. The scan also showed that she was a couple of weeks behind in growth.
All in all we were encouraged by this ultrasound and our hope increased. But because we were only just learning about T18 we were oblivious to the fact that there wasnt really any good news associated with this syndrome. Every cell in our little baby's body was affected by Trisomy 18 and this alone was not good news.

"Hide me under the shadow of Your wings." Psalm 17:8

Trisomy 18

Our precious girl was diagnosed with Trisomy 18 (T18) which is a rare genetic disorder also known as Edwards Syndrome. Babies with T18 have a third copy of chromosome 18 instead of the usual two copies. This abnormal DNA pattern effects every cell in the body which in turn effects all internal organs and systems. The nervous system, brain, physical features, heart, bones, digestive tract and kidneys can all be affected to some degree. This is why the condition is said to be "incompatible with life'. T18 severely effects a baby's ability to grow and develop, 90% develop serious heart defects. T18 occurs in approximately 3000-5000 babies. Most of these babies will sadly die before birth but for those who survive birth only 50% will live beyond a few days to a few weeks.

"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."
Psalm 139:13-16

11 June 2010

A Reason to Go On

The New Year 2010

"Happy New Year!" -  a very common greeting heard at this time of year. This year however, I didn't feel like saying it or hearing it, it simply didn't feel right in the light of what we were going through.
As the fog started to lift, we began the process of trying to understand what the diagnosis meant. I began searching on the internet for information about the condition our baby had and naturally many questions followed. How would our baby be affected? How long did some babies live for? (I was encouraged to hear stories where a few babies actually lived for a period of time.) Could my baby be one of the lucky ones? How did other parents cope in the situation? Was there a mother in Perth that I could connect with? I felt like I had entered into a foreign, unknown world. Before our baby's diagnosis I had never heard of her condition. It was at this stage, that a small amount of hope began to grow.
 Hope that maybe:
*my baby could be one of the lucky ones.
*she could live with us for a short time.
*she would be born alive
*circumstances would change and the diagnosis would somehow improve
*she would be healed. 
I completely believe that God has the power to change any of our circumstances according to His will. He could change this one, He could heal our baby. These tiny rays of hope gave us the motivation to keep going. Our grief  however was still alive and very real. Even with hope, we could not foresee what the outcome would be.

09 June 2010

A Time to Celebrate?

Taken from Charlotte's Eulogy, written by Heather Crane:

"So try and imagine last Christmas for them. They were reeling from such devastating news, and yet they also had three other little ones at home who were full of the Christmas spirit and were ready to CELEBRATE! They had not yet told the children about the pregnancy, let alone the difficulties, and so that holiday time was filled with all sorts of mixed emotions."

What a mixed up and exhausting day that day was for us! The kids excitement mixed with our devastation. We were still in shock and had not had a chance to process anything.
The morning came.... the 25th..... we put on our masks and did our best.

07 June 2010

Another Phone Call

Thursday 23rd December
Straight after we had talked to our doctor about the decisions that needed to be made, we went to visit our pastor. Not long after we had arrived at his office we received a phone call from our doctor, "I went back to my office and checked the results - it's a girl....."
The enormous wave of grief, anguish and complete devastation was utterly overwhelming. We had to leave.
...a girl!

"Life and death can be a truly bitter-sweet experience.
...Grief takes you on a journey where only you can go.
I feel that I am sitting in a very dark pit.
...It is here in this dreaded place that I find the Great
Comforter comes. He sits with me. He holds my hand.
He doesn't take me out or make me better. He simply
takes my hand in His and lovingly says, "I know."
His presence makes all the difference. Jesus is my best
friend, my comforter, my hope, and my love.
He is the One who will gently lead me to my feet
when He is ready and tell me kindly that it's time." 

'Above Rubies' Magazine No.58 by Anna Hogbin

No Decision

Thursday 21st December
Even the suggestion of there being a decision to make in regards to the life of our baby was heartbreaking. Not only was our baby's condition incompatible with life but the pregnancy could negatively affect my health as well.
Because of God's Word we chose without difficulty to let God be 'the giver and taker' of life.
'Then shall the dust return to the earth as it was and the spirit shall return unto God who gave it.'
Ecc 12:7
We committed the difficult days ahead to God and let Him make the decisions as to how long our baby would live, as only God knows these things.
'All the days ordained for me were written in your book before one of them came to be.' Psalm 139:16

The Phone Call

Tues 21st December
Grant answered the phone as it rang in the late afternoon, it was our doctor,"I have received your results and unfortunately they are not the results you were hoping for."
I didn't even have to ask, the look on Grant's face said it all.
Oh the absolute heart wrenching pain....
Our journey of grief had begun.

...for you saw my affliction and know the anguish of my soul. Be merciful to me, Oh Lord, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief. Psalm 31:7&9

Unexpected News

Monday 20th December
I now realise looking back, that our 12 week obstetric appointment was different from the others from the very beginning. I had made a few innocent comments in the days leading up to the appointment about wanting to confirm that I was actually carrying a baby, as I had barely been sick and that was very unusual for me. As soon as the baby's image came on the screen that day I was relieved to see it. The ultrasound technician asked me a few times if my dates were correct as the baby looked small. I told her that I was sure that the dates were right. She finished the scan quietly and ushered us into the doctor's office. We weren't given any pictures and I didn't even think of asking for any. We were oblivious to what was ahead. We sat in the empty office for quite some time. The midwife rushed in at one stage, took some of my records off the doctor's desk and rushed out again. Only then did I wonder only briefly, if there was a problem. Eventually my doctor came in and he asked me again if my dates were correct. He then gave us some news no expectant parent wants to hear, "There may be something wrong with the baby." What?! I felt like I had been punched in the stomach - panic immediately set in. What kind of problem could there be? We were told that not only could our baby have one of two conditions but that both these conditions were incompatible with life! The indicators for these conditions were that our baby was two weeks behind in growth and there was three times the amount of fluid that there should be on the baby's neck and my hormone levels were low. We decided to have a CVS test done  - a needle put into the placenta - and this would determine within 24 hours if our baby did indeed have one of these two conditions. We felt sick with concern. There was a chance that the results would come back negative but I couldn't shake the feeling that something was not right.
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