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.