It's beginning to look a lot like Christmas

Well, the moment we waited so long for finally came last Monday, as we were finally discharged from Birmingham Children's Hospital. Despite a number of minor and one or two pretty major annoyances a massive thank you goes out to everyone at BCH who helped look after Jovie, and us while we were there. We know that with Jovie's condition, when she inevitably picks up bugs and colds we will find our way back there, however in the nicest possible way, I hope its a loooong time before we need to see the inside of that hospital again!

Being home has been amazing this first two weeks. The house is coming along, although still needs a lot of work and bits and pieces doing, but it's home. Jovie seems happier and more relaxed, and I think we are too. Problems have been near non-existent, with Jovie pulling her feeding tube out of her stomach the only moment of minor emergency. All was sorted easily enough and she now has a 'button' rather than a full tube attached from her stomach, which is one less tube to worry about anyway!

Lot's of visitors have been in to see her, both family & friends and doctors, care workers & the like. While I have started my three days working from home with decent success this week, we've both had the fun of getting used to early mornings and the day to day stuff of looking after any kind of baby, let alone one as special as Jovie. Lot's of press coverage came our way this last week as well, with our ugly mugs along with some cracking snaps of Jovie going in the Sun, Metro, Star, Mail online and a host of foreign websites from Fox News to Vietnamese health pages! I also had a chance to promote the charity do on BBC Hereford & Worcester which was great.

Most refreshing of all since being home is our worries have well and truly shifted from getting Jovie home, to normal things like getting the house sorted, and the small matter of Christmas - Jovie's first and the first I have properly looked forward to since 1994... literally can't wait to wake her up most mornings, but something tells me December 25th might be particuarly nice!

I will keep the updates on Jovie's progress going, lot's still to find about her and loads of hurdles to take on. A massive thank you to everyone who helped us get her home, and to all who have kept up our progress, the comments we have had have been humbling.

One particuarly big thank you must also go to the Ronald McDonald House in Birmingaham, where we stayed throughout Jovie's stay in hospital. Our fundraising event for them last Sunday was superb, with lot's of money raised for a great cause. Thanks again to everyone who came and especially to those who bid and bought raffle tickets. Cheers all.

As I don't do these on a computer much (I usually use my phone) here are some snaps of the little lady for those not on facebook...

The end of the beginning...

Jovie Caroline Wyse was born in Worcester Royal hospital on Wednesday, 4th May 2011. She was five weeks early and as a result was taken away after birth for routine checks. As it turned out this saved her life as she soon stopped breathing and ended up in an incubator in the PICU ward.

It became apparent very early on that all was not right with jovie as she was unable to maintain breathing for herself, and despite a number of attempts to wean her off ventilation, the doctors at Worcester were unable to find an answer.

A move to Birmingham Children's Hospital followed, where jovie continued to progress in all areas, however she still showed little or no sign of breathing for herself while sleeping or while unwell.

After a number of failed diagnosis and attempted medication, some with nasty side effects, Jovie was tested, and subsequently found to have Congenital Central Hypoventilation Syndrome. The condition, known as ondines curse, effects the central nervous system preventing Jovie from breathing for herself while she sleeps.

As a result of this Jovie was fitted with a tracheostomy and connected 24 hours a day to a ventilator. In time it is hoped that this ventilation will only be required at night, which one day may lead to the trachey being removed. encouragingly already Jovie enjoys time disconnected from the vent during the day while wide awake.

Due to issues related to her condition and having a trachey, Jovie has never been bottle fed, instead she relied on a NG through her nose. Recently this was removed and replaced with a gastrostomy directly into her stomach. She is given her milk this way, while also enjoying solids throughout the day too.

On a daily basis Jovie requires extra care due to her condition, with regular help to clear her throat with the use of a suction machine. Every morning she has Physio which helps loosen up any thick secretions on her chest. Jovie has two types of circuit, one which is water based, which is easier for her but far less mobile, and one which allows for jovie to be transported, moved around and active like any other child. However this dry circuit can cause more thickness on her chest so needs to be used in moderation.

As parents we have had to be trained to look after Jovie and her equipment. Her trachey and gastrostomy require daily cleaning, while her trachey tube must also be changed once per week. There is also a level of life support and emergency first aid which you must be comfortable with in order to look after Jovie. One of the hardest things to deal with is having family and friends who are unable to be left alone or trusted with Jovie as they have not had any training. At night Jovie is supervised by a professional carer at all times, she cannot be left alone for any length of time due to the importance of ensuring she remains connected to the equipment, that the equipment is working and that she remains ventilated.

Jovie will have her condition for life, but we will never allow it to hold her back in any way. We hope she will eventually only require night time ventilation, and technological advances can only help this become reality. Whatever the future brings we will always be here for her. Throughout the last seven months when those around her have flapped, panicked and failed, jovie has remained a shining inspiration to us all. She has the personality of children twice her age and more heart and courage than most adults.

Yesterday jovie was finally discharged from hospital and we got to bring her home. She smiled and laughed when we put in her bed for the first time, and did the same when she woke up in it for the first time this morning.

I felt like a proper dad for the first time last night, and i have never been more proud of both Jovie and Lorna than seeing them in our house together this morning.

I have no idea how we will get on as parents, but I'm glad we finally have the chance to find out...

Charity Auction in aid of Ronald McDonald House Charity Birmingham

JOVIE WYSE HOMECOMING / CHARITY AUCTION IN AID OF THE RONALD MCDONALD HOUSE CHARITY AUCTION (Birmingham)

ITEMS AVAILABLE TO BID FOR;

Signed photos of legendary Liverpool players including Bruce Grobbelaar & Jan Molby

Family ticket (two adults, two kids) to a Worcester Warriors game of your choice

Tickets to a Worcestershire County Cricket Club game of your choice

A round of golf for 4 at the prestigious Henbury Golf Club in Bristol (worth £135)

Thermae Bath Spa Vouchers, Britain’s only natural thermae spa

1 Week in family caravan on site near St Tropez in Southern France (between April & July or after Aug 31st. T&Cs apply, worth between £250 & £400)

Signed Ricky 'Hitman' Hatton boxing glove.

Signed UFC promotional photos, Rashad Evans & Ross Pearson.

Worcester Warriors executive box for cup game on December 17th. For up to 10 people including three course meal and 5 bottles of wine.

Tan and massage at Belle Beauty in Malvern.

Signed Fulham FC home shirt

4x tickets to Birmingham City v Blackpool

'Little Puds' baby hamper


All proceeds go directly to Ronald McDonald House in Birmingham. A charity home from home accom for families who have children staying in Birmingham Children's Hospital.

Please come and welcome jovie home on Sunday from 5pm at the Marwood pub on the Tything, Worcester. Auction will take place from about 7pm. There will also be a raffle with vouchers, jewellery and other delights on offer on the night.

Whether or not you can make the do on Sunday there are some FANTASTIC items available so please, please register your bids. All items must go!

To bid on any of the items,
E-mail me christiano_wyse@hotmail.co.uk
Text/ring me 07825788729
Facebook me or tweet @sunners14.

Spread the word, get your hands in your pockets and help us say a special thank you to the RMHC in Birmingham.

To reiterate, you do not need to know us or jovie, and you do not need to be coming to the party to bid. Please contact me NOW with your offers!

All I want for Christmas... IS TO GO HOME!

Belated update time, and wow what a month its been. More ups and downs than a rollercoaster, with everything from ufc wrestlers to meetings with Santa going on in our little world of jovie!

Since the last blog we have had fantastic news with the house all but ready, a discharge firmly set for the 28th November and Jovies gastrostomy operation FINALLY completed. We've had visits from great grandparents, presents galore and a load of work on our hands to get both the house ready, and our homecoming charity auction.

Now the light at the end of the tunnel is upon us the last six and a half months seem like a distant nightmare, and while the true reflection will probably come once we are home we are finally truly looking forward to getting home.

The seriousness and sadness of this place was driven home this week as we lent our pushchair to a family we've spoken to a couple of times, whose poor little boy, like jovie has spent his life in hospital, difference being they aren't expected to get home. Horrible, and lending them our pushchair for the chance to take their little boy outside was not only the least we could do, but a reminder of just how much worse things could have been for us.

Issues with the care at the hospital, and various other annoyances persist, yet with the 28th growing nearer and nearer all focus is turning to life after Birmingham! Thank fuck!!

Jovie continues to thrive and shine through it all. She is now 14lbs 14 and is nearly as tall as her mum! She has found her feet now and continues to play with anything she can get her hands on. She continues to enjoy her milk and is now eating a large amount of solids each day. With more room around her stoma we even managed to hear her cry the other day, an amazing feeling!

A huge couple of weeks await us, the huge challenge of putting the months of training and practice into operation and looking after jovie at home ourselves awaits, we hope we are up to it.

Home for Christmas! And a huge party to celebrate on December 4th at the Marwood in Worcester. Auction items still needed and much appreciated. A full list of items to follow to allow people not attending to bid, with all proceeds going to Ronald McDonald House Charity who have been fantastic to us throughout our time in Birmingham.

Fingers and toes crossed and wood firmly touched that the next update will be written from the comfort of our new home!

Its good to talk...

There's an irony when someone who hasn't updated their blog for a while starts with a moan about communication. Unfortunately for us tho, that seems to be the constant topic for conversation in this bloody place. It has been pretty crap from the complex care team and nurses right from the first days on the ward. It got even worse when our eventual home care team, orchard care, started coming up to the hospital to complete their training with jovie. Then since the bristol weekend, things have gone from bad to even bloody worse.

Having been told we could take jovie anywhere as we are fully trained, we headed down to grandads for a visit, while there our training was put to the test with our first home emergency, which as horrible and frightening as it was, was dealt with exactly as we had been shown. We eventually get back to brum to be told that Jovies doctors weren't told about our trip and its caused them a mountain of paper work (tough shit). Turns out us telling the morning nurse, who didn't pass it on, the afternoon nurse, who didn't pass it on and then the night nurse, who also didn't pass it on, wasn't quite enough. The exact same chain of incompetence happened just yesterday when having left specific instructions for Jovies Physio to be done (should be every morning) we arrive in the late afternoon to be told they've left it for us, as no message was passed.

The fact the nonsense in bristol was made all the worse by the fact we were given the wrong equipment (a tube for her oxygen which didn't fit her oxygen) just further compounds are annoyance with this place.

Alas tho, we are stuck here, at least for now. The house is still at least 6 weeks away from being ready. So that's at least 6 weeks of not being told if jovie needs her feeding tube inserted into her t
stomach, something she's supposedly been on the waiting list for for months now. 6 weeks of people asking us about meetings we haven't even been told about and having to explain the same thing over and over and over again.

We took jovie back to the accom. today as we often do on weekends, and watched groundhog day with her. Sometimes it feels like we are living it.

On the far less negative front, jovie is doing well with her sitting up, holding her head up, holding and bringing things up to her face. She is also now enjoying time on her belly and spends more time laughing than one of the jokers laughing gas victims! Her most recent weight came in at a whopping 13lbs 7oz, while her baby hair has almost all fallen out.

Thankfully the emergency in bristol has been the only incident we've had to deal with on our little trips away from the hospital. Five months we've been on this road now. Tired, worn out and massively fed up, but couldn't be prouder or more excited about getting our family home, at last.

Wherever I lay my hat...

Apologies to all for the lack of an update this month, it’s been rather a crazy few weeks.

This week alone began with a serious case of food poisoning (me), and has involved the first friend or family member to be signed off competent looking after Jovie (Kelly), the first time ever eating solids (Lorna... OK Jovie, not Lorna), and biggest and best of all WE HAVE A HOUSE!!

Not a misprint friends, our wait is finally over and all the criticism of Worcester County Council can be revoked! In 6-8 weeks when the house has had a good spruce up including a brand new kitchen (after the copper was pinched out the old one!) and a new door (after the bailiffs destroyed the old one!!) we will be moving into our first family house together. Jovie will be getting out of hospital, and we will be getting our lives back!!

...and not a moment too bloody soon either. Without the house news this update would have been taking a decidedly more sombre tone, as our frustrations with the nursing staff and the day to day life we have been forced to live have reached boiling point. The various annoyances and constant poor communication we have had to deal with could fill a book, with recent weeks (and I put it down to Jovie’s improvement and our clear desire to get her the Hell out of hospital) have been particularly taxing. Events which taken in isolation really don’t sound like much, but five months down the line I am grateful for not owning a rifle and for not knowing where the nearest clock tower is.

Enough of that though. On more positive news I broke down in floods of tears on the way to work today!! Completely out of the blue and completely un-triggered I drove the familiar M5 stretch this morning bawling my eyes out! Luckily it turned to laughter before I was completely out of control but where it came from is anyone’s guess. Without getting too sappy I should just point out I can’t even explain how proud I am of Lorna & Jovie, and my fingers are so tightly crossed that everything works out with the house right now it’s tricky even typingggg.

As I’m doing this from an actual computer it gives me a rare choice to post an up to date photo for those of you not on facebook and seeing Jovie every day by the power of social network news feeds!

Other than GOING HOME!!! not much else on the horizon of note, lots of trips out now we are cleared to take Jovie out in the car as far afield as we like without a nurse, lots of tasting with solids and lots of planning what we are going to decorate Jovie’s room with! A little further down the road our charity auction is a step closer what with HAVING A HOUSE!! with items on offer including signed football shirts, a holiday in France & spa vouchers. Keep your eyes and ears peeled for more details!!

Dicky tums and missing mums

Well, we are still here.

Another week rolls into another week with very little to report since the last blog in terms of major news. The housing situation remains slow and frustrating, with just one house advertised on the web site we must check on each week, we've bid for it and all so fingers crossed, but optimism is hardly sky high in the Wyse camp right now.

Perhaps mainly due to jovie having to endure a tricky couple of days having picked up a cold or bug of some kind, which knocked her well and truly for six on Monday this week. Lots of sleep and (eventually) some anti biotics which despite giving her the usual upset stomach seem to have put paid to that but the whole situation has done little more than increase our growing hatred and frustration with this place and more than one or two of the professionals we unfortunately are currently relying on.

Unfortunately frustration seems to largely be the name of the game at the moment. Now jovie is clearly going to get out, it seems even harder to cope with everything than when we feared she wouldn't. I guess we just want to be left alone with her, at home where she belongs. Soon, we keep telling ourselves...

Prior to this week we had been full steam ahead with taking jovie out and about, back to the accommodation and generally anywhere other than the hospital, thriving on feeling normal, albeit for just a few hours at a time. With Lorn off for a couple of nights for the big gay wedding in gran canaria I was more than slightly looking forward to spending some time just me and jovie during the day this week. So much for that. But alas there may well be plenty of time for that in the hopefully not too distant future...

I'm in danger of starting to sound like a right miserable git here so some good news to even it out; since the first trip back to Worcester jovie has met even more of her family, with great gran making a second visit and great auntie making her first. The doctors have finally stopped messing about with Jovies feed and have committed to starting her on solids very soon. The preparations for the charity auction are under way, with a holiday, rugby and cricket tickets along with football shirts just a snippet of what will be going under the hammer to raise some dollar for the Ronald McDonald House. Speaking of money, we have also opened up a bank account for jovie so one day when she is older she can get loads of charges, get terrible service and pay to make some city fat cats rich just like the rest of us! She just needs to get a job now and we will sorted...

Will update again soon, hopefully in a better mood and with more news of houses and getting out of here...please!

Milestones

Big week drawing to a close. Jovie has moved on to gravity feeds (no more pump, so just like normal feeding but in her nose still) and has also started to take milk from a little syringe. Her weight is up to 11'11 and she is getting on with her new, longer more flexible custom made trachey brilliantly.

All this great stuff pales in significance to the big events this week. Monday saw both me and Lorn fully signed off to look after jovie on our own. Now all we need is a house and after crossing a few i's and dotting a few t's we will finally be out of here.

The second thing was Jovies first ever trip back to Worcester, not only the furthest she's been from hospital but also the first time she has been "home". Lots of family and friends were there to see her of course and it was truly amazing to have her back albeit just for the day. It does however compound the frustration of being here even more.

With being signed off we are now free to take her out whenever we like without a nurse and have made the most of this with a lazy day today lounging out back at old mcdonalds all day. Great fun.

Tomorrow sees another first for us as for the first time since jovie was born, (16 weeks ago!) me and Lorn are going to be spending the night away from her, as we stop in cheltenham for szabos wedding, a dual celebration as its our two year wedding anniversary too. Babysitter in place we will miss her like mad but do our best to enjoy ourselves, with the help of a drink or two I imagine...

The end of all this is slowly feeling within reach. We can now bid on houses back in Worcester so *hopefully* we will be reporting on news of a new house and an escape from all this very soon.

Charity Auction Donation Request

Jovie Wyse was born on Wednesday 4^th May with a rare condition called Congenital Central Hypoventilation Syndrome, or “Ondine Curse” as it is often called. The condition affects the central nervous system, essentially stopping Jovie from breathing when she sleeps. It is an extremely rare and very dangerous disease, especially in newborn babies and as a result of this Jovie had to undergo a tracheotomy and requires 24 hour ventilation.

After spending her first two weeks in Worcestershire Royal Hospital, Jovie was moved to Birmingham Children’s Hospital. With Jovie’s dad working two jobs in Worcester and her mum unable to drive this presented an almost impossible scenario for the new parents. Thankfully they were informed about the Ronald McDonald House Charity which provides an apartment complex attached to the Children’s hospital Birmingham, open to parents of babies being treated in the hospital. Many of you may have given money in some form to this great charity before, albeit unbeknown to you. Those penny jars on the counter of McDonalds? They, along with masses of charity work from the individual houses bring in the money that builds these apartments and maintains them all year round.

As well as providing 60 bedrooms, the Birmingham House offers families the opportunity to cook together, to eat together and share their experiences of the day.  For families coming to the Children’s Hospital for day care, there is also a purpose built lounge, kitchen and play area on the ground floor for their use throughout the day. The House charges the parents nothing at all and is entirely funded by charity work, fundraising and help from volunteers and other kind donations

Without the generosity of the Ronald McDonald House, which receives no funding support from the NHS of government, Jovie’s mum and dad would have been stranded and forced to either leave Jovie alone in hospital, or spend a fortune living out of hotels. Now four months down the line, it a God send that neither of those things had to happen.

Soon, Jovie will be in a stable enough position to get out of the hospital and come home for the very first time. At which point the Wyse family will be returning to Worcester. As a token of their gratitude to the Ronald McDonald House Charity they are hoping to raise as much money as possible to present to the House when they leave. The key way in which they plan to do this is a Charity Auction, which will take place at the Marwood in Worcester on a date yet to be confirmed. What we require are donations to be auctioned off at this event, with the proceeds going towards the Ronald McDonald House in Birmingham. We hope to raise as much money as possible so welcome items of any price range, size or type. Anything from meal vouchers to brand new cars! Whatever you can afford to donate would be very gratefully received.

In addition to the actual auction event itself, a selection of the items on offer will be published in the Worcester News, (Worcestershire’s leading daily newspaper with over 14,000 readers per day) with the facility for members of the public to text in bids for their own chance to win the items (and to ensure we get as much money as possible for them!). Your business card will also be on display at the Marwood during the auction.

If there is anything at all you could donate to be auctioned, please contact me in one of the following ways;

Tweet;
@sunners14

Post;11 Peterborough Close,
Ronkswood,
Worcester
WR5 1PW

Email;christiano_wyse@hotmail.co.uk / pink_princess1216@hotmail.co.uk / ladyjuicy@hotmail.co.uk

Phone;

Chris on 07825 788729 / Kelly on 075981 83595 / Lorna on 078918 68705

Anything you can donate would really help us a lot and hopefully raise loads of money to help this brilliant charity that help so many families in such difficult times. There are a lot of great causes out there, yet this is one that really doesn’t get the coverage it deserves. For more information on Jovie’s condition, please visit www.cchsnetwork.org or the Ronald McDonald House Charity, here http://www.rmhc.org.uk/

To follow Jovie’s individual progress take a look at her blog! www.joviewyse.blogspot.com

Thank you from Jovie, and all the Wyse family and friends.

Day 119 in the hospital...

As if spending the last four months in Worcester and now Birmingham hospital hadn't been bad enough, my evenings have just got all the harder to bare with the return of that bloody show. Well, at least Lorna is happy...

Having said that, for all intensive purposes it isn't all that bad here. Sitting and playing with jovie, all be it in a cramped space sandwiched in with the worlds loudest family, could never be described as being that bad.

A minor let down of a week draws to a close having not got the chance to take jovie back to Worcester as had been promised. Wednesday is now the day for our first trip home, apparently. As with much in this bloody place ill believe it when I see it. Tomorrow sees the final box ticked in our training; life support and the emergency drills. Not something we ever want to have to use but the final piece of the jigsaw. Once completed we can take jovie out around the hospital and grounds as much as we like without a nurse, and then once all sorted on the housing front, we. can. go. home!

The light at the end of that tunnel we have heard so much about really does feel like it could be just around the corner.

In many ways, its the knowing we may be going home soon that is making things tricky. Now we know we are going its becoming more and more difficult to put up with being here. Even being asked if we are ok by nurses has become a constant minor annoyance. This whole situation has stretched us to breaking point and we have really just had enough of this place and everyone in here.

A bit like how I feel after two minutes of watching big brother...

I predict a riot

All fun and games up in Birmingham this week as we are forced to spend two nights locked in the hospital after the riots hit Birmingham. On one of the nights news swept across Facebook and Twitter that the hospital was under attack, one even claimed it was on fire! As she so often does, jovie slept through the lot. Too young that she is to be sent out to get us a new tv...

Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.

Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.

Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.

A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.

Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.

As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...

Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!

Beginning of the end?

JOVIE IS OUT OF INTENSIVE CARE!

Three months old Wednesday and 10weeks in Birminghams intensive care unit. We have been fighting to fine what was wrong, fighting to get the right ventilation, fighting to stay in lucky bed 14! and after all the ups and serious downs we are finally out. Jovies new home is now ward 7, room number 8. A number made famous by Mr Gascoigne so I'm happy enough with that!

The day has not been without its hiccups but we are in positive spirits and hope to God this is the real start of the long journey home. Mixed emotions on leaving the intensive team behind, and a huge debt of gratitude is owed to them. Exhausted yet buzzing about the whole experience. So, so proud of our little girl.

Now for the hard work to really start!

These times, they are a changing.

First update for a wee while. Thankfully because comparatively speaking its been a quiet week or so for the little lady. Jovie has come on brilliantly since all the problems with her trachey were (cue lots of touching wood) sorted. Her personality is really shining through now as she enjoys longer spells awake and begins to develop more and more senses.

Our training continues apace, with both of us having completed a successful full tube change and daily tape changes, which are all parts of her constant care while relying on the trachey, which will be for many years to come.

Jovies improvement was pleasantly noted this weekend by the doctor we owe so much to, the one who saved her life with the emergency insertion of a nasal tube into her throat three weeks ago. She returned from a two week break and was amazed by the difference in jovie. Very pleasing for her, and us.

All this improvement sees us just days away from the next mighty step as we prepare for Jovies move out of intensive care, where she has spent practically her whole life, and onto the ward. A very exciting and equally nerve racking period awaits us as we are well and truly ripped from what in a perverse sort of a way has become a real comfort zone for us. 10 weeks tomorrow jovie has lived in bed 14 (still haven't let them move her despite repeated efforts!) in the Birmingham intensive care unit. Her 2 1/2 weeks in Worcester before that seem a lifetime ago. Now make no mistake about it, the intensive ward of a children's hospital is not a nice place to be. And we've certainly been here long enough, seen enough alarms go off and do not disturb signs go up to know its a place unfortunately some parents are never lucky enough to see their kids get out of. However in the weirdest possible way its been our home for nearly three months now, and next week if all goes to plan (touch that wood again) and we do get out and onto the ward its going to be a strange old feeling. The relationship we have built up with a number of the nurses and the routine we have grown used to will need to be quickly forgotten as we enter the news phase of this crazy, life changing journey we are on. The 18th came and went with no movement and now the plan is to move us on Tuesday, after two false starts last week (through no fault of ours or Jovies) ill believe it when I see it but it seems certain that at some point next week we are off to the ward. Yikes.

From there its a case of getting us trained to do all this from home, and also get us an actual home ready to come out to, a ball which has started to move this week too.

For those who haven't had a chance to come and see jovie post trachey, we are pretty much fully adjusted to it. She continues to grow (ten pounds now!) like any other baby, and the ventilator restricts very little in reality. We have been bathing her, cuddling her for hours on end and to our absolute delight even taking her out around the grounds of the hospital in her modestly coloured pushchair! Jovie sleeps through most of it but its exciting for us at least...

For the two of us normality has began to creep into life as much as it can do at times like these. Iv been distracting myself with football and trying to get my knee better, while Lorn has started to discover the shops of Birmingham (much to the distress of my wallet) and we have both managed to venture out for one night out at least. Small steps for us all but finally all seems settled enough for us to worry more about what lies ahead than what is happening right now. First on the list of future events, the big move and a genuine sad goodbye to some really great people who have looked after our little lady and helped us get through such a dreadful experience.

Like a pig in...

What a difference a few days make. Since the horrendous low of a week ago Friday its been onwards and upwards for our little lady.

Jovies new trachey has been a (touch wood, cross fingers and all that) complete success so far with no more issues of note. As a result we have been able to note forward with learning the skills we will need to eventually get jovie home. Tape changes and all have been successfully completed and we are both feeling much more confident about the road ahead.

Jovie has continued to enjoy her new found 'freedom' and is getting a load more cuddles and attention as a result. Today she had her first proper bath with the trachey, a spell sat in her rocker seat for the first time and to the delight of all around her first spell inside her pushchair. Typically she soaked up all the attention and made the most of her first cuddles with other members of the family. Support from everyone has been great as always with visitors aplenty this week and a particuarly cool custom babygrow impressing all the nurses.

We have been given the preliminary discharge date of July 18th when all being well jovie will be moved out of intensive and onto a ward, a scary yet wonderful prospect. Before then however we will finally get the chance to take jovie out of her immediate bed space when for the first time we will be loading her into the pushchair for a little ride around the hospital. As trivial as it may seem just taking her outside, for her first look at the outside world, is going to be monumental for us. Very excited indeed. Following that we can really start to look ahead at the challenging yet amazing road which lies ahead. After everything we've gone through over the last nine weeks we literally couldn't be happier.

Hope on hold

Just when you thought it was safe to start looking forward, life swings round to deliver a knockout punch David Haye would have paid good money for on Saturday night. This came in the form of what was surely the worst moment of the last 8 and a bit weeks so far.

We had a serious fright here on Friday night. Jovies trachey dislodged again and the doctors couldn't force in her breaths with the hand pumped bag. The situation became so bad that they had to give her cpr and a shot of adreneline to keep her heart going. With their usual routine of tube changing and forced breaths not working the doctor on call effectively saved Jovies life by removing the trachey tubes and inserting a nasal tube into the hole in her throat. She had to sit holding it in for over an hour before they could get jovie to theatre. Really thought we were going to lose our little girl right then and there, it was horrendous.

They've inserted a new different size trachey and assessed her airways with a camera. CT scan shows no damage. Jovie spent Saturday sedated, with the drugs stopped this morning allowing her to slowly come round until the docs are sure the bigger trachey is working. They are saying it was getting caught in the wall of her throat hence why it wasn't working even with bag.

As a result of all this our long term confidence in the trachey has taken a pounding while our short term confidence in simply handling jovie has been dealt a major blow. We will spend the next day or two at least watching her closely and praying that she gets on better with her new tubes. Quite honestly its like waiting for the firing squad. The doctors seem prepared for the worst though, with emergency equipment and drugs on hand, just in case.

Our tiredness seems to turning more into cabin fever by the day, with both of us struggling to maintain our cool at times this weekend. Effort, especially on Lornas part, to spend a little bit of time away from the hospital may eventually prove helpful, and more importantly not dwelling on the horrible what-could-have-beens is the only way we can see ourselves getting over this latest setback with our sanity in one piece.

If and when this hurdle has been negotiated, the next step will be for Jovies ventilator to be decided on as currently she still remains on the multi purpose intensive care machine. Thoughts of this and the developments we hope so much that will follow it will however have to wait...

The Neverending Story

Well, what to say and where to start!? Jovies op was declared a success on Friday, and on the surface it was exactly that. She has been a more active, calmer and all round happier baby since the trachey was fitted. Her attention is better, we've enjoyed clearer and longer eye contact and there is now a more settled sleeping pattern beginning to form.

It hasn't been without some major stumbles, it took just over 24hrs for jovie to whack the entire trachey out, causing all manner of panic and subsequently emergency alarms and re-attaching. The same happened again the very next day while tonight it was all the more alarming when it seemed to dislodge itself, again causing alarms to be pulled and doctors, nurses and the rest to swarm on bed space 14 like bees to honey. Not fun to see and a huge dent to our confidence in thinking we may not be a million miles from getting her home. In fact its quite simply a clear indication that we are. Miles and bloody miles. Now the trachey disconnecting is one thing, we are both already familiar with reattaching it when that happens, but pulling out of her throat altogether is a serious fright, and something that has to be avoided before we can fulfil the dream of getting our baby home.

Our first meeting with the social workers proved a daunting indicator of the behind the scenes work that needs to be done before we can realise that dream. Along with our training (after jovie is declared 'safe' we both have to be signed off as fit to care for her) there are carers to hire (there will be one with up at all times during the night and possibly occasionally during the day) and the small matter of finding a house to live in! Not to even mention the process of applying for the various financial help which may come our way.

Scary stuff all round. It is nice to be speaking about the future though, however complicated that may be.

Jovie had made suitable progress by Saturday night for us to feel happy enough to slip away for some (relatively) subdued birthday celebrations, so thanks to all who popped along for that.

Its birthdays all round in many ways as jovie was 8 weeks old today, sharing her birthday in a round about sort of a way with her granma, who I sure wish was around to see all this in person!

The plan for the next little while is a case of wait and see really, the ventilation jovie will use long term is yet to be decided, while the docs plan on putting a camera down her trachey tube to check its in the right place on not getting stuck on anything. Apparently for a baby so small the tube is a little long and requires a bit of propping up of sorts to stop it dropping into one lung or the other.

Jovie has outgrown her first clothes as she continues to tolerate her feeds well. Another thank you to everyone for the gifts we've been receiving, and a special mention to the darts and domino players at my uncle Eddies pub in Edinburgh who have raised a generous kitty for us which will be added to the donation we plan to give the Ronald McDonald House charity when we finally get out of this place and the hard work will really start...

Usain Bolt

A world record holding 100m runner-esque quick blog just to say that all the consent forms have been dotted and crossed and tomorrow jovie will be having her tracheostomy.

Not a moment too soon really after a couple of pretty horrible days for us and uncomfortable nights for her.

Fingers crossed all goes well and ill update in more detail over the weekend.

And so starts the first day of the rest of our lives...

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.

It's a results game

Another few days since the last blog, and despite rumours in this weeks papers it isn't because Ryan Giggs took an injunction out against us...

As is so often the case everything here ground to a halt over the weekend. We were all prepared for jovie to have a tracheostomy early this week. But as is also so often the case things changed without notice yesterday. Turns out the respiratory doctors want a diagnosis before they agree to the operation. Join the bloody club guys.

In "surprising" news, the results from Jovies muscle dna tests (the ones lost in bristol and recently resent) have come back negative.

This is the dosorder first put forward weeks and weeks ago by a visitiing neurologist in Worcester. A disorder we have worried about and talked about yet never truly believed jovie could have. Yet a disorder the neuros here have almost blindly been concentrating on since we got here.

Anyway, its very good news as it all but certainly means she doesn't have the nasty disorder the neurologists have been certain she has got. This does mean that all the treatment they've given her has done is cause nappy rash, a high heart rate and one fit. Well, like with buses you wait an age for results and they all come at once. On Thursday (God knows how they can know to the exact day) the results for the ondine disorder test should be back with us too.

This explains the newest change, because if jovie DOESN'T have it then a trachy is a must for long term ventilation, and we will literally be back to square one in terms of finding out what's wrong. If she does have the disorder then she will need ventilation only while asleep, which may still be with a trachy but could be something else!! Frustrating, annoying, bloody scary, but at least its something.

As far as how jovie is doing, now she is more active and aware while awake, her breathing drops do seem to be coming less and only when she sleeps, which could support the ondines theory. Her weight is good, so good in fact the little chubber might be having her milk reduced now. She is still causing the nurses grief by pulling out her tubes and wires every time they drop their guard. Lots of new presents have arrived making her little bed space look a little like a zoo! While she has enjoyed a number of visitors over the last week.

Getting back into the world of communication, social networks, replying to most msgs and generally talking to other people has helped me and Lorn find some sense of normality. Sorry again to anyone who I haven't replied to, I'm trying to get round to you all!

Id also like to take the chance to say another big thank you from all three of us to GDL Athletic who are donating money from their annual charity match to the Ronald McDonald House Charity who are doing such a great job here housing all us worried sick parents. While I'm at it, thanks again to everyone for reading and the continued comments about this blog and the kind wishes for us all too.

Will update again on Thursday unless anything exciting happens tomorrow, although it will probably just be to say the results haven't arrived yet!

Quantum Leap

Seeing that I have had messages to blog tonight I guess I better had! Looks like my rambling is in demand, perhaps i have missed my calling in life!

Well ill keep it to the point on account of the fact iv been at work all day and night, jovie has been asleep all day and night and Lorn has been, well, Lorn all day and night.

We had our big meeting with docs, head nurse and neurologists this morning and unsurprisingly the neuros are still certain that jovie is suffering from a muscular disorder. I'm beginning to wander if they need one more case to get a study grant, or money for a staff gym perhaps! The docs disagree and think the brain holds the key so both lines of treatment will continue to be tested, all the while we have to wait for the all important dna results which won't be back for weeks and weeks. The neurologists did however admit that Jovies current meds can cause fits and seizures so they have stopped that as of immediate effect (I just about resisted the urge to say I told you so).

This would all seem like a case of same old, same old. However finally what we also have is a plan of future action. Next week jovie will be going under the knife to have a tracheostomy. This is where a tube is inserted directly into her throat which will connect to (yet another) type of ventilator. Short term this removes the horrible tube from up her nose while also opens up the possibility for long term ventilation. There are hundreds of implications to this. Not least we will be given months of training to learn how to look after jovie in this state. But what it does mean, and what is putting a smile on my face even with the prospect of this pretty horrible scenario, is that eventually it could lead to jovie being moved out of intensive, and then eventually brought home.

Its difficult to even begin to describe how exciting the prospect of even taking jovie downstairs in the hospital is, let alone maybe having her home in a few months time.

Of course it doesn't tell us what's wrong with her. (It looks increasingly likely we won't know that til the results are back in 8 weeks or more). It also doesn't mean things will get better. (There's still the chance of jovie growing out of it. There is also still the chance she may need some level of ventilation for the rest of her life.) What it does give us is more than ever something to focus on and an eventuality to plan for. More than that though, for the first time in five weeks it gives us real hope.

We must continue to take each day as it comes, and pray that they can work out what is causing Jovies breathing problems. We hope she will grow out of it or that a treatment is available. In the meantime however we can allow ourselves to think about what was previously only a dream and what a certain Dr Samuel Beckett spent many an episode searching for: home.

Oh boy.

The plot thickens

For over a week now jovie has been supported by a half-ventilator which breathes at a low rate for her but does allow her to breathe on her own as much as she chooses to. Its not quite full ventilation but not quite minimum support either. The tube from this is inserted about 5.5cm up her nose into the back of her throat. The main problem this causes is the pulling on her nostril when she moves.

That was until last week when jovie seemed to start showing signs of having a cold. Since then the tube has had to be regularly changed after becoming blocked with saliva and snot. For the last two nights running it has had to be emergency removed when its become totally blocked causing jovie to literally choke on the tube that is supposed to be helping her breathe.

It happened for a third time this morning, which in turn set off the most distressing turn of events we've dealt with so far. After the tube change jovie didn't calm down as normal, but instead started to have quite a severe seizure. Cue much panic and action from doctors and nurses.

An ECG was later performed once jovie had calmed down, and it showed a spike in her brain pattern which indicates she has been starved of oxygen in a small part of her brain.

Putting two and two together would indicate that this was caused by the tube blocking. But apparently not so. If it happens again it could mean epilepsy, if it doesn't it may be due to a number of reasons which may or may not fit in with the rest of our ever changing puzzle.

Attention has now fully turned to Jovies brain (the neurologists have STILL been persisting with the muscle disorder theory). Another MRI scan is surely a certainty now in the coming weeks. Yet the next step still seems as clouded as ever. We have our big meeting tomorrow which will hopefully shed some light on the planned road ahead. Its needed as all in all we are firmly in the land of the lost.

We now know jovie definitely has something wrong with her brain, but how serious it is, what caused it, what effect it is having or may have, or even if its the cause of her breathing problems remains a mystery. Incidentally amongst it all jovie has actually gone a good couple of days without many breathing drops of note.

Communication seems to have gone off the boil here, so we have started writing every little thing we see that seems out of sorts down in Jovies little book. The care team has yet to offer the consistency in nurses it promised and all the while jovie fights on oblivious to the growing concern and frustration of her folks.

It was actually her due date today. Happy five week birthday kiddo x

cricket, coincidences & cowboys

The absence of a blog in the last night or two comes down to the fact that almost jack has occurred. The usually quiet weekend came and went while Monday was, barring the much talked about and awaited biopsy, a non event too.

The action came to such a crawl here I'm sure I caught Lorna checking the cricket scores on a few occasions.

Jovies breathing has remained as strong in parts and frustrating in patches as ever. Her drops in oxygen level and breathing rate seem to be coming in clusters, sometimes separated by hours of perfect calmness.

The docs have persisted with the muscle disorder treatment, and we are warned there will be one more to come. Although they have finally agreed that its looking less and less likely the problem is muscle related...

The much talked about care team has been ushered in with about as much use as a chocolate tea pot. Unless you consider coloured card with Jovies name on or cuttings out of Winnie the Pooh as things that are likely to speed her recovery.

On Thursday we have our first meeting with our designated nurses, doctors and neurologists where we are promised answers to our increasingly agitated questions and grumbles. They clearly sense we are bordering on seriously pissed off as we make no secret of our growing frustration at the slow process. For all the tests and drugs they have tried, we are no closer to really knowing what is actually wrong.

Small things to lighten our hearts and moods include Jovies new optical lights which keep her wide eyed and interested while awake. The emergence of a real personality coming through and our increased involvement in Jovies basic care. The foreign doctor who walks like John Wayne has also put more than the odd smile on our faces too. While in completely unrelated small world news, the mother of todays nurse supplied the flowers for our wedding!

On a really negative note, jovie today decided to soil the hallowed badge of the great Tottenham Hotspur by weeing on her spurs blanket. Bill Nicholson would surely be turning in his grave.

Jovie by numbers

30. Jovies age in days as of today.
19. Days jovie has spent in brum.
5. Days til Lornas due date!
35. Days early jovie was born.
3. Different types of drugs jovie has been given for a rare muscular disorder it now looks certain she DOESN'T have.
17. ml per hour of infantrini milk jovie is currently being fed.
6'11. Weight at birth.
6'8. Current weight.
14. Jovies current bed number and also my lucky number. So much so I stopped them moving her to a bigger area as part of her new long term care plan.
15. Negative tests jovie has had ranging from viruses to genetic disorders.
19. Different family and friends visitors who have met our little lady.
9. Feeding tubes jovie has managed to pull out when the nurses have not been looking!.
5. Different kinds of ventilator jovie has been on.
2. Hospitals.
60. Rooms at the Ronald Mcdonald hotel/apartments. All of which are totally paid for by the charity through those penny jars in maccies and the generous work of volunteers and fundraisers.
10. £ it costs per day to park at brum hospital without parking pass, it is only tenner for the whole week with one.
16. Nurses on new long term care team, designed to help us get more involved with her day to day care and keep more continuity with her nurses. It also allows us freedom to decorate her bed space and have regular meetings with all her docs.
3. Nurses not in team who have liked the little madame so volunteered to still look after her.
250. Members of staff in the brum intensive unit alone.
130. £ spent during initial week living out of Worcester hospital.
65+. Miles I have to drive each day to get to work and back through the shit hole that is Birmingham.
22. Average number of hours jovie sleeps per day.
6. Weeks it will take before Jovies dna results are back and we may have a clear idea of what is wrong with her. We found out yesterday the first tests have only just been sent after being 'lost' on route to labs in Bristol.

And finally,

2. The number of ladies in my life I love with all my heart and pray each day they are safe and healthy.

A question of sport

Not much to report today, jovie has been as good as gold by her own sparodic no breathing standards.

Lorn had some good alone time with her and I had a good cuddle this evening. The well rested doctors returned from their long weekends and discussed lots yet did very little.

Last weeks mri results are being looked at again tomorrow, while a muscle biopsy is planned for later this week. Jovies medication continues and the high dose of caffeine she is on is being staggered a little so she doesn't get too dependent.

While our spirits have improved after the horrible weekend the worry and anticipation of what happens next is still thick in the air...

Garfield was right about Mondays

Very brief update tonight on account of the fact its been a horrible, horrible weekend. We've been messed around, confused, upset and really pissed off at almost every junction.

Jovie has gone from sailing along nicely with the aid of the new type of ventilator to very nearly being in an emergency situation on two occasions when her breathing dropped to dangerously low levels.

As it turns out, and as is often the case, we are effectively back where we started now, with jovie doing ok with help from the ventilator, contributing minimally to her breathing. The new drugs continue and the doctors remain as puzzled (and increasingly clueless) as ever.

A wise man recently said to me 'tough times don't last, tough people do' the fact I once had to help this same person to get a taxi home naked after losing his toga in a fight doesn't detract from the advice.

I just hope we have what it takes to live up to it.

Be careful what you wish for

Jovie Wyse is 24 days old. In her little life already she has been kept in a giant fish tank while a machine does her breathing. She has been poked and prodded by the finest doctors Worcester (who guessed from meningitis to brain damage but couldn't fine what's wrong with her) to Birmingham (where she has had tests on her brain, lungs, muscles, nerves, head, shoulders, knees and even toes) have to offer.

She has been pumped full of paracetemol, morphine, gaviscon, ketimin, two drugs I can't spell which half the nursing staff hadn't heard of and more caffeine than an Eddie Stobart driver heading from lands end to john o'groats.

After Worcester couldn't figure out what was wrong they shipped us up here. Collectively she must have been seen by 50 nurses and dozens of doctors. She's had new born babies weighing 500g and 6 year old boys who look like the kid from Stuart Little as neighbours.

We've cried over her, laughed over her, argued a little over her, sat staring at monitors all night over her and even grew closer over her.

Throughout all of this jovie has remained an amazing little mystery.

There have been times where we have questioned the hospitals for how they have gone about things. Times we have been excited enough by progress to allow ourselves to get excited about the things we so want more than any other and there have been times where all hope has completely escaped us.

What we haven't had, and what jovie hasn't had, is any kind of an answer. Yes we've had guesses. Some logical, some ridiculous. But we have had no answer as to what is actually wrong with our little girl.

Now i wouldn't wish all this on an arsenal fan, but if anyone is ever in this position, the one thing you want more than ever is an answer. Perhaps we are too stupid to deal with things without a reason, perhaps we just need to know what's coming next. The desire for an answer is so strong you find yourself hoping tests come back positive, just to explain things. Its literally the most horrible feeling ever.

Well we still don't have one.

However, for the first time today, something seems to have clicked. So we have another guess, but one that makes sense.

A scan of jovies brain stem activity has revealed a problem in the area concerning respiratory action. The caffeine treatment was a predictable failure today. But rather than the docs going off on another tangent they have decided to finally call a spade a spade. Or in our case, a respiratory disease a respiratory disease.

They are by no means certain but the thinking now is that jovie is suffering from a rare disorder called congenital central hypoventilation syndrome. Its a sleep disorder often refered to as ondines curse after an old tale about a man who cheated on a nympth who was then cursed to forget to breathe when he slept.

While its not guaranteed that this is what jovie has, the docs have been wrong more than once with their diagnosis, it is what they are currently treating her for. This involves a new type of ventilation which keeps her breathing regularly and allows her to sleep without having to be physically forced to start breathing as and when she has one of her moments.

Again its a time thing. The actual test for the disease may take weeks to come back, and jovie may require another mri scan in the meantime. But for now at least it gives us an answer, which we've been wishing for...

BUT. The problem now is not only do we have something to concentrate on, we have a very serious potential to worry about. In the grand scheme of things if it does turn out to be this syndrome, then it could have been a lot worse. We are told people can live relatively normal lives with it and even in some cases grow out of it.

Does this stop us worrying about it?

There's more chance of Barcelona playing a long ball.

For fork sake

We have mentioned a couple of times how not much happens on the weekends around here. For once though it seems that this weekend will be a little different due to an interesting fork in the road we seem to have come to.

After countless tests, bloods and a handful of trial treatments finally today a test result came back with some kind of sign as to what might be wrong with jovie. A detailed test of her ears and brain stem reactions has revealed that there is a slight delay in the respiratory part of her brain stem. Logic may dictate that this would be an obvious answer to our little conundrum, but apparently its not quite that simple.

If indeed it is this delay in the brain stem that is the problem, the docs say that a simple kick up the arse will sort the breathing problems. The slight kick being a hefty dose of caffeine. Now the observant readers of this blog will point out that jovie has been on caffeine before (in actual fact she has been pretty much from day dot) and that it would be rather odd for that to suddenly become the answer to our prayers, when its seemingly done bigger all before. It was hardly a surprise to us then, that now 12 hours later, we have seen no sign of improvement in her breathing.

It seems if it looks like a horse, smells like a horse and sounds like a horse, its probably a cabbage.

The coffee trial will continue until tomorrow when if improvement still isn't seen, that road will be closed for now and the other route will be taken.

That other route again focuses on drugs for the rare genetic disorder that they still feel jovie may have, and which could in theory be causing exhaustion specific enough to affect just the breathing part of the brain stem. This fancy treatment apparently costs £80 per single pill.

If you were ever one to wander where the money you pay the nhs goes, well now you know.

For us, all this just raises more questions, more confusion and to be honest more upset. The diagnosis sounded so promising earlier today that the caffeine may be the answer, yet now if it isn't (which looks certain) we are faced with yet another horrible wait to see if another random drug has the desired effect, and then what if it doesn't?

As for the little lady herself, she continues to sleep through most of it. Blissfully unaware of all the fuss and bother going on around her. She had another batch of visitors today, including her great granny, thank you again to everyone who has visited and sent messages over the last 23 days.

By tomorrow we will have confirmation if the caffeine ain't working, and jovie will be on to the next treatment.

Some definitive answers sure would be nice.

Deja vu

Saturday 7th May.
After two days of progress under full ventilation, jovie is taken down to the support ventilator (called cpap) and then off the machines all together to breath all by herself.

Wednesday 25th May
After two days of progress under full ventilation, jovie is taken down to the support ventilator (called cpap) and then off the machines all together to breath all by herself.

Saturday 7th May.
Breathing completely unaided and with only minor blips along the way jovie goes 12 hours breathing on her own.

Wednesday 25th May.
Breathing completely unaided and with only minor blips along the way jovie goes 9 hours breathing on her own.

Saturday 7th May
We get excited by jovies progress and start to hope we will soon have her home. The one thing we want more than any other in world.

Wednesday 25th May
We get excited by jovies progress and start to hope we will soon have her home. The one thing we want more than any other in world.

Saturday 7th May.
Jovie has visitors, all of who leave seemingly with the knowledge that a corner has been turned and its only a matter of time before this nightmare is over. We allow ourselves similar thoughts as we contemplate jovie coming out of intensive.

Wednesday 25th May.
Jovie has visitors, all of who leave seemingly with the knowledge that a corner has been turned and its only a matter of time before this nightmare is over. We allow ourselves similar thoughts as we contemplate jovie coming out of intensive.

Saturday 7th May.
Jovies breathing starts to become more erratic. Her stats drop alarmingly and the doctors are forced to put her back on full ventilation. We are distraught and can't see anything passed the worst case scenarios. All of our previous joy and hope is ripped from us.

Wednesday 25th May.
Jovies breathing starts to become more erratic... Yet while her stats are safe the doctors are forced to put her back on minor ventilation.

Saturday 7th May
We promise ourselves not to get overly excited by potential progress and good news. Or likewise too downhearted about bad news or stumbles in the road.

Wednesday 25th May
Despite promising ourselves not to get overly excited by potential progress and good news or likewise too downhearted about bad news or stumbles in the road...... (You can see where this is going)

Are we living in groundhog day? For a while this evening, even after such a good day, angry and fed up we would have said yes. But progress is progress. Jovie IS in a much better position than she was on that Saturday in Worcester. But fuck me this is hard. Its impossible not to get excited when progress seems so promising just as its impossible not to fear the worst when problems arise. We keep telling ourselves this. We just won't listen. Are we living in groundhog day? For a while this evening, even after such a good day, angry and fed up we would have said yes. But progress is progress. Jovie IS in a much better position than she was on that Saturday in Worcester. But fuck me this is hard. Its impossible not to get excited when progress seems so promising just as its impossible not to fear the worst when problems arise. We keep telling ourselves this. We just won't listen. Are we living in groundhog day...

A singing rooster once said: "sometimes ups, outnumber the downs."

I don't tend to listen to. roosters all too much, but sometimes that may well be the case.

As of writing this jovie has gone nearly 36 hours on the minimum amount of breathing support. The longest period she has effectively been supporting herself (she is not completely ventilator free, but what she is on is the least support you can have). In that time she has shown just two drops in her breathing, both rectified easily enough. Lots more visitors have been in to see her, Kelly even managed to get chatted up by a bloke with no teeth...

The doctors seem to have lots of tests planned - repeat Mri scan, ultra sound to check her diaphragm, various bloods - all of which seem to be a little on hold as her recent progress has caught them a bit by surprise. More waiting and watching for the next couple of days it would seem.

Jovies medication (the one I can't spell) has been halted as a test to see if it was the cause of her improvement. So far no sign of anymore or less struggle without it. While the biggest problem at least for now seems to be a nasty case of nappy rash (jovie, not Lorna).

Cause for optimism for sure then. The tubes that are currently attached are fitted with a simple nose mask, so no nasty tubes down the throat, which means cuddles for us and a much louder when crying jovie!

Perhaps the rooster was right about the ups. However, its hard not to be cautious at times like these. Two moments of no breathing is still two too many for jovie to be even close to breathing independently. While another question mark has emerged with a rise in her heart rate.

Still lots of questions to be answered. But with the admittance in the intensive ward of a serious car crash victim shaking us all up tonight, I can't help but look at this little girl of ours, and despite still not knowing what is wrong with her (and as cliche as it is) feel happy for the fact that things could be a lot worse.

Move along, nothing to see here...

No blog as such tonight on account of the fact I have been at work all day (in brief - not as bad as I had feared, and was pleasantly surprised by more than one person) and that Lorna can't read.

Jovie has had a good day with regards to her breathing, more of which will be explained in a full waffle tomorrow!

The main reason for this little post was just to share my utter delight that after popping in to say goodnight tonight I got to hold our little darling for over half an hour! Amazing feeling.

Now, sleep is in order as leaving again for work in 5 hours, night all!

Roll up! Roll up!

One thing we have learnt during this surreal couple of weeks since Lorns waters broke during an exciting edition of Jeremy Kyle, is that not a lot gets done in hospitals on a weekend.

Jovie, bless her, slept ignorantly through all of yesterday, while we moaned to nurses about doctors and to doctors about nurses. Their plan as it turns out is to change the (clearly not working) medication, take a piece of her muscle for tests and continue the attempt to slowly coax jovie off the ventilator. None of which will happen til Monday. Perhaps the six figure salaries these neurologists are on aren't quite high enough to warrant missing the f1 on a Sunday for...

Also happening on Monday is the horrible scenario of Lorn being left up here alone while some poor sap has to spend the whole day away from his girls at work. Not a fun prospect.

Other random irritations this week: chavs who spend all day watching tv and making a mess in communal living apartments which they are getting for free during supposedly difficult times, doctors you've never seen before telling you things you already know or worse - things that aren't right, nurses who stare at you for uncomfortable lengths of time, men who wear sunglasses inside intensive care units, finding negatives out of positives, having to watch the last day of the football season via the bbc red button, being charged £10 a day to park in a hospital car park & of course, having to go through all this shit at all.

However, any sign of doom and gloom in the Wyse camp today was lifted with guests a plenty (even if the star attraction slept through them all!) and delightfully, a good hour stint of Lorn getting to hold and cuddle jovie outside of her little open top incubator. We even got to dress her for the first time, which beliieve me is a HUGE deal when quality time is looking at your little girl in a fancy fish tank...

So another week bites the dust, one week down here in brum and an opportunity to say another big thank you to everyone who has sent their regards, all the visitors we've had and everyone who is reading this nonsense night after night. We really appreciate all the comments.

Although we are still a long way off any answers, lots has been done this week and with lots already planned for next week, who knows what news we might have come this time next week. Hope you all enjoyed your weekends (Birmingham City fans included).

All the best from the three of us.

Plus ça change, plus c'est la même chose

"Is it just me, or does anybody see
The new improved tomorrow, isn't what it used to be
Yesterday keeps comin' round, it's just reality
It's the same damn song, with a different melody
The market keeps on crashin, tattered jeans are back in fashion
I tell you one more time with feeling, even though this world is reeling
You're still you and I'm still me, I didn't mean to cause a scene But I guess it's time to roll up our sleeves
The more things change the more they stay the same
The same sunrise, it's just another day"

This was all set to be the most miserable, self pitying post yet. Anyone wandering how jovie got on without the tubes will have to wait for another day, as her breathing was so bad last night we got in this morning to find they weren't even willing to try. With that, depression washes over us in an awesome wave.

A welcome visit for the little mystery from her nanny, auntie Lisa and the schwarzenager-esque mistress nanny to the Wyse family, auntie Kelly aside the day has been filled with a miserable mood and the feeling of limbo which has pretty much taken over our lives. Bickering with each other and an inept nurse hardly helped matters either.

Having said all that, and hence the ripped lyrics above, despite all that, come the end of the day things haven't actually changed much one way or another since yesterday or the day before. A chest scan was clear today ruling out an infection. The current medication has been tweaked and the plan is still to give her a whirl off the system at some point to see how she copes.

In truth tho, what has really cheered us up this evening is our little lady. So determined to make her nurses lives Hell, and so active since her meds she gave her nurse tonight no other choice in the attempt to ensure her wriggling about doesn't dislodge her tubes but to create the worlds first makeshift baby straight jacket. Or as Lorn so delicately put it:
"she looks like E.T!"

Walt Disney presents...

Results from recent tests have shown that jovies brain is successfully sending messages to her nerves. The nerves are passing these commands to the muscles and her muscles are performing the actions. Simples. What this means for us is there isn't a fundamental problem with her system, but a syndrome/disease/disorder that is causing the gaps in her breathing.

As with everything it seems this is good and bad news. Obviously its good because everything works, but bad because the docs have little idea what the cause is. Today they ruled out any problems in her ears, eyes or throat and paved the way for the ventilation system which is supporting her system to be switched off.

Great news in some respects (if this were a Disney movie jovie would wake up breathing for herself and we'd all live happily ever after). But then we've been here before (twice in Worcester they took her off, twice they had to put her back on...)

So countdown begins. Hopefully by tomorrow morning they will be ready to remove the tubes and we can see how long jovie lasts breathing unaided. We want to believe she can just defy the odds and do it by herself. More realistically, we hope that however long she manages (13 hours the first time, a week ago Sunday in Worcester is the best so far) the docs can get an idea of what is causing the drops and how her current medication (caffeine and something I can't spell) are benefiting her.

As for us, we've settled in as best we can in Birmingham. We are trying to remain positive and trying not think too much about the horrible reality of having to go back to work next week. We even managed a couple of laughs today at a doctor probably not called Wolfgang and Lorna taking an interest in Islamic extremism.

Really tho we just want our little girl home so we can have our own happy ending.

Fuck you Walt Disney. We want one too.

Pinky and The Brain

The doctors have identified that jovie's breathing problem is occurring due to a breakdown somewhere between the brain sending the msg to breathe, the nerves telling the muscles to breathe and the muscles performing the action to breathe. One of those 'sections' is failing at times, the challenge and difficulty is finding out which.

Today was a busy one, and I guess a positive one too. A heart and lung e.c.g ruled out any problems there, while an ultrasound of the diaphragm only highlighted the lack of activity during the periods where jovie offers no effort to breathe herself. This was accompanied by explanations from the docs as to the worst case scenario if this prob isn't fixed, which left us rather worried and upset for most of the morning. (No matter how many times we promise ourselves not to get upset by these conversations, it ain't getting any easier!)

We have promised good news tho and as with everything it comes in threes; they did increase her feed again today and they stopped the morphine she had been on for a day or two.

Best of all though today was the day of the all important MRI scan. Although not definitive this would be a clear indication of if it was the brain we needed to really worry about. Now its hard to explain the feeling you have in these scenarios, we know something is wrong with our little girl, and we are desperate to know what, but as much as you want an answer you also want all the tests to be clear. Well the MRI came back, and while not unblemished, it was clear in all the important areas and with no sign of worrying damage to the brain. A huge relief all round.

For all intensive purposes this rules out the brain at least for now and turns attention towards the nerves and the muscles. Tomorrow they are continuing the attempt to stimulate some more spontaneous breathing while also testing for damage to the nerves. One door closes...another slams in your face.

In other news today, jovie had a nice visit from the Wyse grandparents, Lorna only cried once, we had a welcome fit of giggles thanks to fonejacker in a waiting room and to send us home smiling at least a little, jovie opened her eyes as wide and as aware as we have seen so far.

While real optimism is hard in these situations, we have to try to make the most of the 'good' days.

"And what are we doing tomorrow? The same thing we do every night..."

Monday, May 16th 2011

Welcome to our first blog about the newest member of the Wyse family, our amazing little lady, Jovie Caroline Wyse.

Jovie was born 5 weeks early on Wednesday, May 4th 2011 at 20:06, weighing 6lbs 11. Right from the off she was a bit of a mystery, somehow managing to tie two knots in her cord, something our midwife had never seen before.

The reason for this blog is to help keep our friends and family up to date with what is going on during this difficult period, because as most of you will know by now, Jovie has been in intensive care since her birth. For those unaware of the details she is generally as healthy as a horse. Everything is where it should be, and works how it should do, however her breathing has been an issue since day one, and from time to time, seemingly without reason or warning it will all but stop. She spent the first 11 days of her life in the neonatal ward at Worcester Royal hospital, whose staff we would like to offer thanks to for all their hard work and effort.

This blog begins as the second chapter of our little journey begins, as today saw jovie moved to Birmingham children's hospital. A move which has also seen both of us move with her, into the (don't laugh) Ronald MacDonald hotel/apartments.

Before we witter on further, its worth taking a second to say what a fantastic place this is, and what a superb charity it is who runs it. Basically its a free very high standard hotel run and funded completely by charity for the families of sick children.

Anyway, its our plan to keep this little blog going charting the progress of our special little mystery, keeping those who are interested updated through the week, while giving us a chance to vent our feelings and try to make it make a little sense while we are at it. They will usually be short and sweet, and not as big a ramble as this! Again, its just a way of keeping people up to date, so please feel free to read as and when you like and drop us a comment too if you like.

So, today was the day we, as our little family, packed up and headed to brum, for how long, we do not know, and to what result we can only guess. Obviously, we come here with huge hope they can help get our little girl fighting fit. The transfer here was flawless, and the team involved deserve huge praise for that. Already we are learning that there are so many people helping jovie, many of who we never get a real chance to thank. The intensive unit at Birmingham was a real shock to the system, a huge open plan floor, with beds children of all ages and equipment as far as you can see. It was also a pleasant surprise as we learnt that each patient has their own nurse and a dedicated team of consultants. More impressive still was the speed and efficiency they worked at and in the space of just five hours jovie had already been given a clean, been fed (they had temporarily stopped her milk for the journey) and the tests were underway. Which is where we are at now, in reality no nearer to our answer but confident we are in the right place and on the right road. Its going to be a long trip, but we will get there together.

Night all.