Day 24 - Burial and Thanksgiving Service

What a day of mixed emotions, with such incredible sadness in saying goodbye physically to our Talia and yet seeing such hope for the future. We have an absolute unmovable knowledge that we will be with Talia once again and we now understand when the Bible talks about "groaning inwardly" (Romans 8:23) for this day to come. We would do anything to hold our baby again!

I will share more about the Thanksgiving Service tomorrow (too exhausted tonight) and will pull out some of the video and post this also for those who were unable to make it. We had around 150-180 people come along to remember Talia, which was a great blessing to us.

There were around 50-60 at the Burial Service, and it was amazing to see the wind die down and the sun come out just as we started, then as we finished, the clouds and wind came out again - thank you Lord for reminding us of Your Presence.

We laid Talia in the ground and released 19 balloons to signify each of her days on earth, and the fact that her spirit no longer resides here, but is in heaven with God. The balloons travelled directly over Talia's grandparents and Aunty Alison's (and Paul) house which was another meaningful gesture from the Lord.

This is a lovely place for us to remember our baby and we will not forget her, since she has changed us forever!

Day 23

Not much to say for today. We have been preparing for the burial service and thanksgiving service tomorrow and have been so sad thinking about all the work involved to deal with this loss, instead of being able to celebrate something joyous.

Nevertheless, we will celebrate the short life of our beautiful little girl who touched so many lives, especially her parents. Tomorrow we will bury our baby in a lovely peaceful place and Jan's sister, Alison has planned to send up 19 balloons to celebrate each day of her life.

We have decided to put up the video/photo presentation we will be showing tomorrow at the services, since there are a number of friends and family who cannot be with us at the service. We had originally planned to put this to another song, but Jan didn't feel it fitted at all and the duration of the video didn't match it either. This morning, I had a very strong sense from God (at 6am) to use another song which I knew we had somewhere, but I didn't really know it at all - We dropped it into the video and it fitted to the very second (as you will see). This song from Roma Waterman is called "I was Carried" and we will have to beg permission from Roma to use it, as it captures our journey so very, very well. Please click below to see some of our journey with Talia.

Day 22

Today involved more planning for the funeral and thanksgiving service for Talia. It was a tense day with some struggles as our grief impacted our emotions in unpredictable ways. We are trying to make sure our love overcomes the anger which sometimes comes from nowhere at the moment.

Family and friends are a great help to us, and my team in our business are great - they have refused to let me come back to work and are demanding that Jan and I take some time together on a holiday to work through the grief and also connect more closely with God. I suspect we will go down this path, as we need to work through some things together and understand what God would have us do for our future.

We spent some time at the Arthurs Creek Cemetery today choosing a plot for Talia to rest, and chose a beautiful location with space for Jan and I to join her one day. I believe that we will never actually be laid in this grave, since I am convinced that we are near to the return of Jesus and this generation may well be the one to see Him come in person. It will be glorious to meet with Talia and see Jesus face to face!

It was also time to pack up all the wonderful gifts given to Talia into storage. People have been so kind and thoughtful with so many clothes, blankets and toys. There was a sense of deep sadness as we looked through the few things she actually used (very important to us now) and the special things her two grandmothers knitted especially for her - I remembered the sense of joy they both felt in giving these to us.

We cannot know if God will bless us with another child in the future and so packing up these things is especially sad.

Day 21

Jan and I spent much of the day at Church today. We have made the decision to lay little Talia at the feet of Jesus and surrender her into His care - He knows her so well, since He created her (I believe He made her whole and complete - Trisomy 18 was something which came as a result of a world which has moved away from the Creator).

The service at Yarra Plenty Church was a very powerful one, and our friend Pastor Steve Wyndham shared our grief and sorrow with the congregation who had been praying with us for this miracle - it was a difficult thing to discuss, since none of us has the answers as to why God didn't heal Talia.

The amazing thing was that we were able to find refuge as we worshipped God and thanked Him for the time we had with our little girl. It was powerful to be able to have a place where we could praise God with a broken voice through the tears and not be concerned what people thought of us. This was our family and we weren't the only ones crying.

One of the older saints in the church shared with Steve that during the worship he had a vision of Jesus holding little Talia in His arms and rocking her to the music as we worshipped God. This means so much to us, and we can't wait to be with her again - we know we will be soon enough!

The most powerful and important thing which has comforted us is the fact the we are still Talia's parents and she will always be our little girl. Talia will live eternally (as will we) and hence it means the world to me that I am still a dad and Jan is still a mum.

The two things I would ask that people avoid saying to us are:
- "We were parents for such a short time". Talia will always be our little girl and we are her parent; and
- "Talia is now healed by being taken to heaven". This just isn't the case. Talia is complete and with Jesus, but she wasn't healed - we can live with this, since God is sovereign, but it is important to us to be real in what we say. One day we WILL understand - we just don't at the moment!

Day 20 - Planning to Remember

We had another difficult and emotional day as we plan to bury our little baby and to celebrate her very brief life on earth. Catherine spent the morning with us, since she had been in the operating theatre yesterday (with the broken finger mentioned previously) and had not said goodbye toTalia.

We held our little girl for the very last time, and gave her into the hands of Jesus as we pictured her with Him, whole and complete and full of joy as she waits for her mum and dad to join her. We so wish that we could be with her and Jesus and leave this pain behind for ever.

The lovely lady from Bethel Funeral Homes was wonderful and loving, helping us to deal with the planning required and the formalities we hoped we would never know about. The hospital was also incredibly caring and kept Talia in the nursery area overnight, as well as giving us all the time we needed to say goodbye.

For those who would like to celebrate Talia's life, we invite you to join us on Wednesday, the 30th September:

• Brief burial service at Arthurs Creek Cemetery at 12.30pm (see http://www.whereis.com/vic/arthurs-creek/cemetery-rd#session=MTA=) which is open to all;
• Celebration of Talia's life at Yarra Plenty Church at 2.30pm (360 Main Rd, Lower Plenty)
• Afternoon Tea afterwards at the Church

Instead of flowers, please can you consider a donation to an Orphanage which is now fully funded by our Church, called "Care Compassion Home" in Western Kenya. This Orphanage has 26 children, many which are HIV positive and we would love to see them have a future. Gifts can be made to "Yarra Plenty Church" and will be provided in full to the Orhanage.

If you would like to share any thoughts, to possibly be read at the service, please leave a comment to this post (we have many already).

Day 19 - With Jesus

Talia went to be with Jesus this morning at 9.50am after her little heart failed.

She was peaceful throughout the night. At 9.40am she cried briefly and then stopped breathing. The medical staff gave her some oxygen but her heart rate began to slow and then stopped suddenly. The doctors were not able to revive her and she went home to be with God.

This has been the most difficult day we could have imagined and we are still processing everything. Our family and friends have been right beside us as we all wept for most of the day and held little Talia's body, hoping to see her little eyes open once again.

We cannot understand why this has happened and we are simply holding onto God, and choosing to believe that God is the same yesterday, today and forever and He is good, despite the evil and sickness which impacts each of our lives.

Tomorrow we have to make decisions about the funeral and burial, but today we have just one decision to make; Do we choose to surrender the pain, anguish and questions to God and allow Him to build something powerful in our lives? We are trying hard to do this.

But we miss you Talia so very much. We know you now have perfect health and are completely at peace with Jesus, but how can we live without you?

Day 18

Today was very good, although little Talia is still having to put a lot of effort into breathing on her own.

The doctor has increased Talia's milk to 6ml every 3 hours and her digestive system appears to be working well, although she has quite a bloated tummy. Considering she was on 1.5ml for her early days, this is a great step, although nearby babies in the NICU are having 100ml or more!


For the first time today, both her grandmothers had a nurse of Talia today which they were thrilled about.

Talia is certainly beginning to show her personality - lots of looking around, funny faces and arm & leg movements. She seems to like sucking the little dummy and was able to swallow a little milk orally which is encouraging though we doubt they would consider removing the feeding tube. She is developing a strong cry and let us hear it several times today!

Thankyou for all of your prayers and your wonderful practical support. We are so blessed and are feeling much more prepared for the potentially tough times ahead - still praying for God to remove the Trisomy 18 altogether, since this is not His intented diagnosis for Talia.

Day 17

The breathing continues without any issues. I wish I was better at celebrating these things, but fortunately we have our supporters to yell and dance when God does good things!

Talia had no breathing problems overnight and Jan for once has a good surprise when she went in to the NICU this morning to find that Talia has been promoted from the critical section to the section for babies who are breathing on their own (mind you, it is confusing when you can't find your own baby!).

She has been putting more effort into the breathing, but hopefully this is simply due to her size and need to have more milk to build strength. The great news is there have been no Apneas occuring at all to this point - only some shallowness of breathing at times, which is quite normal.

Talia spent much of the day Kangaroo Cuddling with Jan again (skin to skin) which is wonderful, but she did sleep most of the day until Uncle Eric showed up and Talia decided to wake up somewhat. She is now having 4ml of milk every 3 hours, which is a lot for her - and she managed to poo twice today, which is very exciting.

This is more exciting than any normal situation, since it shows her digestive system is working correctly as this is an area of risk.

Even more brilliant was to see the nurse put some liquid on a cotton bud and see Talia sucking on it furiously. This means she has a sucking instinct - another area of previous concern!

Praise God - this has been a great day and we desire to see His Presence powerfully in the NICU - not just touching Talia's little body, but meeting the needs of the other babies also!

Day 16 - Off the Ventilator

Talia was very grumpy this morning. She has gotten very sick and tired of the ventilator tubes down her throat (the doctor likened it to a garden hose down the throat of an adult!) and she was very pleased to hear that today the doctors were going to try and take the tube out.

Jan and I arrived and spent some time with her, but it was clear that she was not going to be entirely happy until this change was made.

At 11.30am, Charles the Pediatrician came in to remove the tube and the nurses let Jan help to remove the tape from her face, which took a few minutes to clean up.

And then Talia was free of the ventilator tubes finally, which was a very exciting moment for all of us. It was very suprising to find out that the doctors intended Talia to breath completely on her own, with no CPAP or nasel prongs, etc.

Jan and I spent around 3.5 hours nursing her on our laps and there were no breathing issues at all. Talia was very comfortable and enjoying every moment. It was beautiful to see her little yawns and hear her little noises finally.

Now, after nearly 6.5 hours, she has been fine with the breathing, so we are praying hard that this indicates the obstruction and central apnia issues may be gone. We are believing that she will be fine for the entire night.

Thanks for your thoughts and prayers - we can certainly feel you upholding us and whilst the journey is long, this is an exciting step forward.

God is good!

Day 15

We had a positive meeting today with the pediatricians and key people at the NICU, and they feel that Talia is now on negligable morphine and breathing support with the ventilator. The other drugs are not being used any more either and Talia is the most responsive we have seen her.

It would be great to stay like this for a while, but Talia is clearly annoyed by the tube in her throat and would like to see it gone. We pray that this tenacity will be applied to her breathing once the tube is removed, and this is now planned for tomorrow.

We are also aying that as part of the complete healing for Talia, God will allow her to cope brilliantly with being off the ventilator and will activate her brain to operate the breathing (and other areas) fully normally. We don't want to see the apnea (see http://kidshealth.org/parent/medical/sleep/apnea.html) occuring frequently as previously and the doctors hope that she is now more able to cope.

Talia may have obstructions in her throat as well as the central problems and mid-morning tomorrow, we will see if she can cope on her own again. The heart issues are being put to one side at the moment, and we will concentrate on this key issue with her. She will be able to cry once again without the tube, which will be a pleasure to hear.

Today we celebrated her two week old birthday (thanks to Alison and Jan's mum especially) with her receiving a special card and a lovely bracelet with her name. The nurses prepared a lovely card, dressed her for the first time and Talia looked lovely and responded strongly.

Thanks to God for His mercies and thanks to all who are speaking words of LIFE over little Talia.

Day 14 - Repentance

There is a reason I didn’t post anything yesterday. I had nothing of value to share, because I fell apart!
In truth, I felt abandoned by God and overwhelmed by circumstances. So many difficulties have added to our journey and a sense of hopelessness overcame me as I tried to look forward. I was very angry at God, but this achieved nothing and so my anger turned inwards. Sadly, instead of supporting Jan, I drained her of faith and for all of this, I need to repent.

Today, God has begun to soften my heart and bring me back to Himself through a range of events.

Firstly, Talia is still stable and has been stable over the weekend, although medications and ventilator support is being reduced. She is becoming more responsive as a result and less happy with the tubes in her throat. The doctors are intending to remove the ventilator over the next few days and we will see how Talia responds and what issues this may bring. Clearly we want to see God bring about correct, stable breathing and then focus on the heart issues.


Over the weekend, we both had time for cuddling with Talia, but this was more complex since both Jan and I have caught colds and have been trying to ensure we don’t put Talia at risk (or the other babies in the NICU).

I want to share some of the things which God is allowing me to understand, since these are foundational to our journey:


It is inconsistent to understand that Jesus paid a price (His life) for healing and then believe it is NOT God’s intention to heal.


Can we say “God decided not to heal someone?”. Is it possible that God would actually cause sickness and disease to “teach us” something? How can God decide not to buy something that He has already paid for, since Jesus died for us to be saved, delivered and healed.


Would we expect God to turn us down if we ask for forgiveness? Most Christians have no difficulty in accepting the unconditional forgiveness God offers. Why then do we believe Jesus died only for our forgiveness and not for our sickness and disease, despite what the Bible says?


Why then is sickness not always healed? When Jesus was ministering, there was instances where additional persistence was required, especially in relation to His disciples. Even with what the disciples had seen and learned, they were sometimes unable to bring healing without further assistance from Jesus.


Why do we think that when we pray for healing and nothing happens, that it must be God’s will to not heal, even though this is against His nature? The answer is to persist and break through until it is no longer possible to do so. There is a level of warfare which we can only enter into based on our level of intimacy and worship to God.


Our pastor and friend, Steve Wyndham today shared a challenging message based on 2 Kings 6:14-17, which relates to the great prophet Elisha being attacked by the armies opposing Israel. His servant was terrified, but Elisha allowed him to see that God’s horses and chariots of fire were surrounding the armies.


The point is that we find it difficult to see what God is doing in challenging situations. We need God to open our eyes and allow us to see Him moving, to see His purposes and His resources – this applies in all situations.


By seeking intimacy and actively worshiping God, ESPECIALLY when there is no explanation for the circumstances we find ourselves in, we will achieve a breakthrough and develop a level of faith which pleases God.


I spent much of the weekend angry at God, because I had forgotten who He is. My need is to repent and get back into His arms, remembering that God is good all the time and His love and mercy never fails. God gave us each a will to respond to our situations and it is time for me to exercise my will to celebrate who God is, regardless of my circumstances.


In Luke 18:8, Jesus expressed His concern about the end days: “when the Son of Man comes, will He find faith on the earth?"


We will persist! What life do you want to live?

Day 12 - Clarification

We are certainly seeing some things happen, but they are more related to those who are praying and seeking God for Talia, than Talia herself.

Talia is stable and behaving much like other newborn babies who are struggling with various issues. The Mercy NICU has up to 50 babies at any one time who need help with breathing, including ventilators for periods of time, and whilst Talia has some additional complexities, most of the issues she is exhibiting are commonplace in the NICU.

Talia is responsive and we are advised she is in no real discomfort, otherwise she would be clearly indicating this in various ways.

As the doctors reduce the breathing support and associated drugs, Talia will be able to cry again (we long to hear her cry!) instead of just screwing up her face to indicate she is annoyed with something!

Clearly we don't know what the future holds, but I feel prompted to make it very clear that we are desperately concerned about Talia's comfort level and are balancing this with our desire to see God move in her life.

Why do I share this again? I have chosen to publish all comments and not edit them (unless something offensive is posted) and I am responding to something which was raised in a comment yesterday and distressed both of us in what it suggested. There may well come a time in which Talia is clearly in distress and a very difficult decision will need to be made.

We hold fast to God's promises and the healing He offers, but should Talia not be healed, there are instances of Trisomy children who live fulfilling lives - how do we know? Search the web and you will find some of them who even share their stories personally. Should they have been terminated? Likewise should the 50 babies in Mercy NICU be allowed to succumb because they may need support from machines for a period? I am sure all of you have your own opinions, but we will openly state that we are proud with our decision to take Talia through to birth and give her the opportunity for life and healing. Indeed, we have and will continue to hand over the results to God, but we will do ANYTHING we can possibly do to influence the outcome, both from a physical and spiritual perspective.

Jan spent some wonderful time with Talia again today, and I am now just over my cold, so tomorrow I finally get to hold my baby again.

The distractions come thick and fast to both us and those who are praying earnestly for Talia. Today Catherine had a bizzare incident in which she tried to save a child from injury in a playground (the mother was oblivious to the danger) and this resulted in her breaking her finger. This is an incredible distraction for her, as she will have difficulty now for 6 weeks!

Along with business and other serious complications in our own lives, it seems clear that there is great spiritial opposition to this move of God. I guess this is a good thing, since it would seem to indicate something is happening in the spiritual realm, but the pressure is intense and I wonder if we can tolerate it. I would even say not to join with us on this journey unless you are willing to deal with spiritual opposition.

Daniel 10:11-13 talks about prayer being heard immediately, but the response being delayed due to warfare in heavenly realms. It also says that "From the moment you decided to humble yourself to receive understanding, your prayer was heard, and I set out to come to you" - I pray that I would meet these criteria, since Jan and I are seeking understanding from God more than anything else.

Day 11

Bill Johnson states that "Faith is required to tap into something which is not logical and outside of human capability. Only Faith can grab hold of a reality that we do not deserve".

We are now in a position of applying Faith alone in Talia's situation, and this struggle will continue through the journey of Talia's life. There is no obvious sign of healing at this stage, and yet God is calling us to hold on and persevere.

Talia's condition has not worsened, although she has struggled with a larger amount of food (milk). The doctors are trying various changes to reduce her dependency on machines, etc. The intent is to take her off the respirator in the next few days, but this could result in a range of complications related to her heart and breathing.

Jan spent some time today with Talia on her bare skin again, which was again such a joy to her and little Talia. It may take 10 minutes to set up, but it certainly is worthwhile.

A good friend encouraged us tonight that progress cannot be made without taking risks. I have never been afraid of risk, but when it concerns my baby daughter, this is a very different situation. Knowing that things are expected to change drastically in the next week or so is a fearful prospect, and we must take advantage of this time to hear from God.

If anyone wants to pray for us, please can you ask that we would hear clearly the voice of God and know what He would have us do in coming days. The Bible says that "Faith without works is dead" and I believe this is telling us that saying we have faith and not acting on it is meaningless. Faith is only relevant when the situation has no natural chance of occuring and so the worst case for us is that we will please God since "without faith it is impossible to please God (Heb 11:6)".

Thank you again for your wonderful, encouraging comments. It is a joy to know there are so many people holding Talia up in prayer.

Day 10

Today was a quiet day, and I had to spend most of it away from the hospital since I have developed a sore throat and headache. I cannot risk Talia getting anything to add to her difficulties.

Jan is fine and so was able to spend some time this evening cuddling little Talia, which is great (no photos, however).

We had a meeting with some 7 of the doctors and nurses today to discuss moving forward as they are pleased Talia is stable and now want to start her down a path of improvement. Her food (milk) intake is being increased to 4ml every 3 hours and will continue to increase, since she is handling this well. Hopefully she will feed directly in the near future, since this is important to Jan.

The doctors have explained everything very well and we know that in the next couple of weeks, her heart condition will begin to be revealed and this is expected to take us to a point of having to make some difficult decisions. We are praying that God will intervene before we get to this point.

It has been a hard day with various criticism coming to us regarding our stance for healing. This adds to the challenge of applying our faith tremendously and I find it difficult to accept (in general, not just for Talia) that God wants us to pray for His will to be done and learn to accept the consequences.

Of course, I am reminded that Jesus prayed at Gethsemane prayed "yet not My will but Yours be done", but this was actually spoken with complete understanding of His Father's will and Jesus knew He had a choice - He could choose not to go through with the Cross, or He could do what He knew He was born to achieve in bringing eternal life and salvation to every man, woman and child.

When it comes to praying persistently, the bible is so clear that we have been given the mind of Christ and the authority to bring God's Kingdom to earth. Jesus made many references to persistence as being a good thing which would move God when applied in prayer.

Until God directs me otherwise, we will continue to persist for Talia's healing. I ask that each of you draw upon the reserves of faith which I know God has given you and stay with us on this journey, since this will change you in the process.

Thank you all for the amazing comments and support - it means so much to us!

Day 9 - Stability and Hope

Today brought some hope to us, since Talia has been stable and comfortable now that the doctors have identified the appropriate balance of breathing support and positioning, etc.

Talia was extremely responsive today, and was looking all around her for a large part of the day. She clearly wanted to know who all the people were praying for her and most exciting was that she was able to spend 2 hours or so close to Jan out of the special crib. This was even more special since Talia was looking into Jan's eyes for much of this time, so a very special connection was formed.

The hospital staff are incredible and the love they have for all the babies is so evident. Most of they may struggle with understanding the hope we have, but it doesn't stop them loving our little girl.

During the night, whilst praying for Talia, I felt something strongly from a spiritual perspective. God prompted me with the need to begin to take authority over this situation and I began to pray for this Trisomy 18 to be destroyed in her body. We have been waiting for Talia to become stable and previously (even yesterday) I have not fully understood why this was so important.

Today this has become clear, and I sense that God wants us to be persistant in praying through Talia's healing miracle. It would be so easy to give up and accept what the medical world calls "inevitable", except that our God always has the final word on what will be and nothing is out of His control.

I believe that whilst it has been impossible to focus on this breakthrough in recent days, since we have been fighting for Talia's very life, we are now in a position of "resting" before God and this is the time to begin to take authority and petition God to move powerfully.

We fully intend to pursue God on Talia's behalf and just as Jesus taught in Luke 18:1-8, we believe God will respond since this request is within His will as revealed in His Word.

The sense of direction I felt from God last night was confirmed in a dream I had during the night, and again by others who independently felt the same direction to "take authority". We also had the privilege of two lovely ladies from Christian City Church (C3) coming to annoint Talia and pray for her, which happened whilst she was on Jan's lap - this was special and Talia seemed to respond strongly whilst being prayed for, looking at everyone as they prayed and even moving her head, which isn't ideal with the tubes!

A number of our "miracle team" organised a prayer meeting in the hospital chapel for Talia this evening, which was a time to seek God further for this breakthrough.

We so much look forward to God working in little Talia's life over coming days and what a joy it is to be a part of this journey, no matter how painful and challenging. So many lives changed already due to one little 9 day old girl...

Day 8 - Birthday Party

Today we celebrated Talia's being in this world for a full week and after a very difficult night, she finally settled down to a stable condition and is being fed milk once again.

So many people have fallen in love with our little girl, and it was wonderful for family and friends to express this to Jan and I and Talia. Her cousins and niece made her a very impressive card and she was wearing her new headband (from Robyn) to impress the nurses.

The road ahead is still very rocky. For much of the night and morning, Talia had some sort of event occuring every 15 minutes which caused her to work against the ventilator and her vital signs dropped seriously. Whilst the doctors don't know the cause, they have increased her morpheine level which has stopped this issue, however the result has been other problems causing discomfort (which have then been resolved). Due to the complexities of Trisomy 18, nobody really knows what will occur and the responses Talia will exhibit to various treatments.

I spent many hours during the night working through the issue of when is little Talia at a point in which her body cannot go on, given the problems we are seeing. Many would say Jan and I are being unfair in keeping our precious daughter alive under these conditions, however I can say with complete honesty that I have crossed the line now and my love for Talia is the most extreme love I have ever felt. I want nothing but the best for her and finally I can begin to understand the intense love that God the Father has for each one of us.

This was my cry as I spent many hours during the night with Talia, singing and praying with her and continuing to petition Jesus to touch her body and restore her to the way He created her. No, I don't believe God created Talia with Trisomy 18 in her body to be an example, or to teach us something, etc. I believe that God created her perfect and the influence of a broken and fallen world (of which I am a part!) has allowed sickness and disease to come into being. Jesus died to bring us life, salvation and healing and wants nothing more than for sickness to be removed from each of our lives.

So why is Talia still suffering with this condition? I cannot explain why God has not yet intervened, but this will NOT stop us asking him to remove this condition from her body. The only thing which can stop us is if she is taken away or gets to a point in which she is clearly suffering - even then, we will keep asking God to intervene, because we know with absolute certainty that He can bring about this miracle.

My simplistic perspective is that God can heal anything at any time, without the person's faith being an issue to Him. However, He seeks to partner with us and faith moves God to action. Genuine persistence brings about a response from God and this is what we desire.

We love this little girl so much and sitting with her, just holding her beatiful little foot (as I love to do) is enough for now.

Day 7 - Faith Tested to Extremes

Can you imagine watching helplessly while your child almost suffocates to death, unable to do anything but cry out to God in anguish. This was Jan and I tonight on two occassions so far - it will be a long, long night!

Talia had some episodes in the previous night with blood in her lungs, and they have now managed to change the settings on the ventilator to equalise the pressure somewhat (reducing the risk of bleeding, which is related to the heart condition), however it seems that the blood remaining in her lungs is blocking the ventilator regularly until it clears out.

It would be easy if this was the main problem, but it is merely a symptom of the condition and the bigger decisions now come closer to us. Who are we to make life and death decisions for another human being, and yet we are required to do so.

Would Talia be best left to suffer breathing or heart failure without resucitation, since her body is struggling to cope with the difficulties of breathing, etc? Should she undergo a heart operation which will alleviate some of the problems but not solve them? The risks are high and we hate to see our precious baby in any pain or discomfort - how can we know what choices to make?

This is the time to hear from God clearly if there ever was a time.

Today also contained a number of joyful moments. There was time for Jan to hold Talia for a couple of hours on her lap which was very moving.

Catherine's 2 year old daughter, Poppy was smuggled into the NICU and desperately wanted to pray for Talia, which was an amazing blessing to us.

The pure faith of a child is beautiful, since they understand the love of their parents and of Jesus who loves them even more. The trust that Jesus will look after Talia and the expectation of His healing power was a great example to us.

I spent much of the night praying with Talia and singing to her. She is peaceful again and tomorrow I hear that our "miracle team" want to recognise her first week with a birthday celebration. I'm not so good at celebration, so this is another blessing to us in having such friends and family. Yesterday we were all able to cry together and tomorrow we will look at the joy little Talia is bringing to so many!

Day 6 - Continued

Minutes after I posted the previous information, we received another call from the hospital to let us know Talia had been stopping breathing a great deal and was now being put on a ventilator to do all the breathing for her. This was devastating to Jan (and I) and we raced to the hospital as quickly as possible, as if we could do anything anyway!

Carman's song was in my head as God continued to tell me to "trust in Him, though our prayers have yet to show". We certainly had no option and we fought all the way to give this situation to the Lord. These words upheld me through the entire day.

Little Talia was peaceful and comfortable and again we learned that despite our fears, it may well have been that she simply needed to rest since her little lungs were still learning how to work properly.

The consultant in NICU (which is Neo-natel Intensive Care Unit - our home for the next few months!) advised that the breathing issues may be due to infection, but may also be due to Talia's brain not being able to manage her respiratory system. If the latter was the case, she may be on a respirator for the rest of her life - this news was heartbreaking to Jan especially.

Having sent an SMS to some people, it seemed that our "miracle team" was on the case and we almost immediately had around 10 people close at hand in the NICU. We went into the chapel at the hospital and began to cry out (literally) to the Lord to release His healing on Talia - I believe the Bible teaches that Christians are given the authority to release God's power on this earth and have the incredible joy of partnering with Jesus through His Holy Spirit. Still a lot to learn and understand and hearing God is just so difficult through this pain.

Our dear friends are so close to our little Talia now. We are bonded as family through this little girl and many tears were shed on her behalf today. She is now very comfortable and we are praying earnestly that the breathing is NOT related to her brain, but from a much simpler cause.

Tomorrow perhaps we can cuddle out little treasure again?

Blessings to a beautiful family!

You are an amazing family: Jeremy, Jan and Talia! Know that we are standing with you all the way and will never give up. Our God is awesome and He is faithful. We speak blessing and life to you all.

What can I do to help?

Hi my name is Catherine. I am a friend of Jeremy and Jan and of course Talia,

If your reading this then you know and understand the helplessness that I feel. We all feel helpless and we wonder what we can do to help. I want you to know there is something we can all do. It will require something from you. It is something that can't be bought.....it can only been given from the heart. This is the recipe for it :

Miracle Working prayer

A lot of love - add as needed
A heart of compassion
Large amounts of faith - the type that pleases God
Spoonfuls of hope
Dollops of peace
Add thanksgiving liberally

Mix all ingredients without ceasing

Bake in the oven of perserverance at 200 degrees for as long as it takes

This is one of many recipes that cooks miracles.

I encourage you to pray for this family. Make your own recipe.

Love to this family....from the Warrens

Day 6

We have been told that Talia has had a difficult night and stopped breathing many times (meaning they had to manually stimulate her to breath). They think maybe she has an infection which may be causing this and we hope this is the case - that can be fixed!

I can't get the Carman song "Saved, Delivered and Healed" out of my head today. God is saying something very strongly to us and hence I have added this song to the site (should be playing now!). These are the lyrics as they mean so much to me in our situation and for little Talia:

God’s love for you goes on and on,

When other hearts have failed;
This love forgave from Calvary’s cross,
Where that love was nailed.

But you must believe, He wants the best for you,
Though your prayers have yet to show;
Let your heart be strong, and your faith arise,
As I give you what I know:

Well, I know there’s a God in heaven,
Who saves, Who delivers and heals;
For He gave His Son, the Lamb of God,
The Savior, the scripture reveals.


Set aside all the doubts, set aside all the questions,
And hold fast to that which is real;
God’s word does not sway, that’s why still today,
I’m standing, saved, delivered and healed.

Night and day He thinks of you,
He hurts to see you crying;
He wants for you, and He hopes for you,
You’re always on His mind.


So trust His heart, and lean on Him,
And let the Father lead the way;
Many things of God I still don’t know,
But through the years I’ve learned to say:

That I know there’s a God in heaven,
And He saves, He delivers and heals;
For He gave His Son, O the Lamb of God,
The Savior, the scripture reveals.
And set aside all the doubts, set aside all the questions,

And hold fast to that which is real;
God’s word does not sway, that’s why still today,
I’m standing, saved, delivered and healed.

I will add news when we get to the hospital...

Day 5 - Jan leaving the hospital

Today was the biggest challenge yet. Jan came home from hospital and this must have been an extremely sad and difficult part of the journey for her, to leave without our baby. I managed to hide many of the baby things in the house to try and ease the pain, but it was so sad for her.

It didn't help that I was at a business meeting and Jan didn't have a key to the house when she did get home! Luckily her family was with her and I was able to come home quickly and assist. It is so difficult to balance our lives at the moment.

After being home for just half an hour, Jan was called by NICU to say that Talia had been stopping breathing every hour or so and was now on the CPAP again. Jan was very concerned and we went straight back to the hospital again.

It's strange how something terrible can actually end up being good news! We were pleased to understand that Talia being on the "nasel prongs" for 18 hours was an unexpectedly good outcome and it is very typical for newborns with any breathing issues to go back onto CPAP regularly to help them relax as they learn to use their lungs for the first time (of course, they don't use them inside the womb). In other words, Talia would go back onto CPAP for a period of time and then hopefully would be able to cope with "nasel prongs"' for a longer period. This was good!

The afternoon/evening spent with Talia today was the best time yet. She is now becoming responsive and moving her arms with some force and confidence. She is trying to grab things and now (finally!) opening her eyes - actually just one for the moment - and looking around at things with some degree of curiousity. She is also crying loudly for the first time and when mummy holds her, she is settling down well. This is just such an exciting time, and yet we know there is an expectation that her heart will begin to have serious issues in just a few days.

Still holding on to God as we pray with friends over her little body. Only God can bring about the outcome which will give life to Talia.

Day 4

Today the nurses put Talia from CPAP (assisted breathing) onto "nose prongs" which is actually a good thing, despite the way it sounds. This was intended to be just for us to cuddle her, but we were so slow in getting organised, she was on them for half the day and then I finally had my first "kangaroo care" cuddle with her on my hairy chest - she didn't seem to mind!

This was an amazing experience and a step closer to that "letting go" (not there yet!) for me. She seemed to be quite twisted but apparently was very comfortable, since she had no breathing issues for an entire hour.

We then moved her to Jan for another hour, which is typically somewhat too long for a cuddle, being off CPAP, but Talia had no problems at all. She ended up being off CPAP for 18 hours, which was very pleasing to the nurses and ourselves. Even the pediatrician on this occasion was very positive.

Every day has setbacks and challenges, mixed up with joys and steps forward. The emotions are draining us and all we can do is keep holding on to the One who loves us beyond our understanding. We know there are incredibly difficult decisions to be made and we have God and some incredible family and friends standing with us every step of the way.

Day 3

Every day we are held up by the prayers of the dozens (probably many more now) of people who are lifting Talia, Jan and myself to Jesus, the Healer. We can feel it very strongly and never imagined this level of support could exist - what a privilege it is to have family and friends who know Him.

Talia is starting to be fed with her mother's milk finally, which is a good thing. She had some initial troubles, but is getting better with it.

The discussions today with the Pediatrician have been exceptionally difficult. He is speaking a death sentence over our baby and providing us with two options for the heart condition - one terrible and the other worse. We will not accept this, since we know a third option which the master healer provides. We are rejecting the death sentence and constantly speaking "life" over Talia. Jesus brings life and abundant life - we are learning to speak God's Words over her and to sing to Talia and she is responding.

This photo is our favourite to date, since my finger is bigger than Talia's whole arm - she is so fragile and yet holding on (literally!). It is an incredible joy to hold hands with my little girl!

Day 2

Talia had her eyes open yesterday, but seems to be struggling today much more. She is on CPAP to assist breathing and the only response is when I tickled her beautiful little feet.

We can finally look more closely at her and Jan spent some time doing "Kangeroo Care" with Talia on her bare skin. This was extremely emotional and both of us are only just understanding that Talia is our little girl and a part of us. The last 9 months have been unreal (in the negative sense) and now reality is hitting us - we are really a mum and dad and Talia is our special gift to cherish, no matter how many issues she has.

Why did God choose us to look after her, when we are so inadequate? It can only be to bring Him glory, since without being held in His hands, we have nothing to offer this tiny little girl. How can we learn so much about love in just one day?

Jan may have let go and bonded with Talia, but I need help to let go and give everything to our baby, no matter how beautiful she is. We are very fortunate that Talia has no real external issues to deal with, although there are some serious issues internally. She is truly gorgeous and I am terrified of giving in to her!

It is amazing to see that every time we are struggling, exactly the right person comes in to spend time with us and Talia. We have so many wonderful supporters (some of who may add some entries to this blog!) who are praying with us and Talia - we will not give up on seeing God bring about her healing and will hold on as tightly as possible to Him.

Day 1 (7th Sept, 2009)

This was the day we had been both looking forward to and dreading at the same time.

The doctors had expected Jan to give birth naturally, but with some inducement and so we went into the hospital on the Sunday afternoon ready for the experience of labour, etc. However after monitoring the baby for some time, there were some concerns about this approach and they recommended that Jan stay overnight and deliver the baby with a C-Section on the Monday morning. This proved to be good advice, since it was discovered that the baby's cord was around it's neck and the natural approach could have had a disastrous result.

So finally at around 1.30pm, Jan gave birth to our first child (at age 42 for both of us!) and Talia Esme entered the world. From my perspective, this was a difficult experience - clearly more so for Jan, however my inability to cope with blood and medical talk meant that watching a baby born in this way was a challenge and the ongoing issues are not easy to cope with. God sustained me through it and Jan did brilliantly as she became a mother for the first time.

It was immediately apparent that Talia still had problems and this was a hard thing to deal with. With both Jan and I and dozens of close friends and family praying for her complete healing and believing for this to take place, we were sure that God would intervene and yet it appeared all the symptoms were still in existance?

Amidst the bad news, we found that a previously diagnosed issue (which was verified in 4 ultrasounds by different doctors) called "double outlet right ventrical" could not be found to exist anymore. This was something very major and was unlikely to ever be able to be resolved. And this was great news, even with the fact that there was still one or more holes in the heart remaining.

And so began the first day of being parents, and trying to understand all the basics whilst dealing with issues that no parent should have to consider - would she make it through the first day?

What was God doing? All we can do is hold on and put Talia in His loving hands...

Background

Over the last 9 months, my wife Janette and I (Jeremy) have been through the nightmare of discovering our first baby (after 5 years of trying) was suffering a rare genetic disorder called Trisomy 18, meaning the baby had extra genetic information which would typically lead to devastating issues if it made it to birth, and a very early death if it lived beyond a week.

The doctors did not offer life to our baby - they advised that we should terminate this little creation, primarily to make it easier on ourselves for the future.We emphatically responded with NO; since this was the baby which had been given to us and God could bring good from any situation.

This was the beginning of our journey which we will describe in more detail in future posts, suffice to say that we have spent many months understanding more of God's heart towards healing and wholeness and His desire to bring about healing on earth "as it is in Heaven". We have learned, as we have seen miraculous physical healing actually take place, that God equips His people (Christians) with the authority to bring about His Will, which includes Salvation (knowing God to begin with), Deliverance (being released from evil) and Healing (wholeness of body and mind).

The journey has changed us forever and has impacted many of those with whom we have contact, and has provided us with the foundation and ability to live through the fear and uncertainty of our baby's future, knowing that both ourselves and our baby are safe in the hands of the One who loves us more than we could ever imagine.