The end of the beginning

6 weeks and 13 1/2 hours after Jovies Jeremy Kyle induced early birth.

6 weeks and 13 1/2 hours of worry, upset, fear, wrong diagnosis, stress and upheaval.

6 weeks and 13 1/2 hours of getting to know our gorgeous little girl from the sidelines, showering her in gifts and all the love we could muster.

6 weeks and 13 1/2 hours of waiting and a letter from southmead hospital of all places tells us what we've been waiting for, but dreading all the same.

"Mutations in the gene are associated with CCHS"

In English, jovie has been diagnosed with Central Hyperventilation Syndrome.

The disease, popularly known as ondines curse, is the very problem the top doc here thought it was, and absolutely isn't a muscle disorder (again resisting saying I told you so). In all honesty at this stage, we know very little about it. If you are interested in finding out more about it we found this today - http://www.cchsnetwork.org/ - which looks helpful.

Of the varying degrees of severity, jovie falls somewhere in the middle. It will mean she will need ventilation while asleep for the rest of her life. It also means she may need some help while awake, but should improve with age. It also means the end of our lives as we know them...

...and the start of what will certainly be a scary, incredible, life changing life with our daughter. We are told just 33 cases are active in the UK, barely 200 or so in the states. Almost all are given a good chance of living a full life, albeit a very different one to what we all know.

The shock, relief/horror of it all hasn't quite sank in yet. Being told your daughter has tested positive to a dangerous disease is a strange thing to take, particularly when you know of all the tests that have been done, this is one of the better things to come back positive in many ways.

We are both exhausted with everything that's gone on. Scared about the road that lies ahead but above all else, excited by the prospect of what we hope is at the end of that road.

A new long term ventilation machine is already on order, with a mask to be trialed, which is expected to be quickly abandoned in favour of the tracheostomy mentioned in the previous update. Soon after our training to eventually take jovie home will begin. With her first stop being out of intensive to the ward, then onwards from there. We have been told to expect months of training and meetings with experts, care workers, health care pros and therapists. What it means for us when we are finally approved to look after jovie on our own is anyone's guess. There have already been mentions of housing, full time careers and funding and we haven't even scratched the surface yet.

So, that is that for now. We have our answer, and a million more questions that have raised as a result. Ill keep on with this blog when there's news to report, jovie will one day need to be told she's one of a very special 34 cursed by ondines. I hope we can cope with what lies ahead for our little family. We never thought things would turn out this way, and never imagined we would be dealt this hand. One thing will always remain however tough it gets, while in Worcester one of the many doctors jovie was seen by said it best when he said to us after an especially bad day; no matter what happens, she will always be your daughter.