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.