2012

Almost a  month to the day since the last blog, re-reading myself brings a smile to my face, not as it reminds me how happy I was to get Jovie home, but because it shows me that happiness hasn't died down a jot! Touching as much wood and crossing as many fingers as possible, as far as the little lady is concerned it's been an absolute dream start to life at home for her. Jovie's charity auction for RMHC was a huge success (more on that in a bit) Christmas was a blast, New Year was good fun (even if Jovie finally dozed off just as the fireworks started at about 11:15pm!) and the day to day life of living with, and caring for our little girl has been more fun and more rewarding than I ever imagined it could be.

The house is beginning to take shape, and by that I mean most of our junk has found it's way out of bags and onto floors! Jovie's huge stash of Christmas goodies have accounted for quite a bit of that too. We seem to be in a decent enough routine in terms of looking after Jovie, with both of us managing to spend some time together and alone, with the help of great friends and family it has to be said.

Jovie passed the 8 month point just a week ago, and is developing well for a baby of her age, obviously she's a wee bit behind after spending so long stuck in bed in intensive care but we are really pleased with her progress - she is starting to sit up on her own for very brief spells, she seems keen to try and crawl/shuffle when on her front, and her eating is fantastic, with her night milk feeds gone completely and a healthy mixture of milk (still through her gastrostomy) and solids (orally) during the day. Her amazing little personality is really shining through, I can honestly say I'm yet to see her without a smile on her face first thing in the morning - a stark contrast to her mother then!

No major hiccups or grumbles with her care package, the night nurses arrive at nine and leave at seven, sitting and watching our baby sleep to keep her safe. Our spare room is packed from wall to ceiling with Jovie's supplies, some of which we've had troubles with when it comes to deliveries but all in all things have started well. A few nights recently have tested our powers of sleep endurance with no carers coming at night due to illness or what have you, but we take it turns to sit up and cope with it like any normal family would do. It's the feeling normal part that has probably been the best thing, taking Jovie to town (which she nearly always sleeps through) or to the supermarket (which she loves!) and even getting her down the pub once or twice too! Yes you get the odd gorm looking at her like she's an alien, but I think neither of us suffer fools to gladly so it never interrupts our fun.

On the horizon, my dad is nearly trained to look after Jovie, and will beome the second member of our family/friends to do so. This gives us a bit of support when he's up or we are down visiting, and also the potential for a babysitter once and a while! We are yet to hear when we will be called back to Brum for another sleep study - Jovie continues to thrive during her three hours a day with no ventilator, and we are keen to extend this time but can't before her CO2 levels are monitored in a controlled environment. With Christmas done and dusted it won't be long before my wallet starts to shake in trepidation with May (now to be known as simply 'expensive') just around the corner; Jovie and Lorna's birthday's within 2 days of each other - ouch.

A little update and another big 'thank you' is also due on our fundraising efforts for the Ronald McDonald House Charities. The charity auction we ran late last year, with big contributions from all the auction bidders, Kelly's Raffle and generous donations from too many people to mention in fear of leaving any out, raised a whopping £2,700! This was absolutely fantastic and way more than we had anticipated... so much more in fact it has given us the imputus to hold onto that amount for the moment, in an attempt to increase it to our new target of £5,000. This amount would allow us to purchase a 'room sponsorship' at RMHC Birmingham with Jovie's name displayed on the room we stayed in. We are setting a deadline for this of Jovie's first birthday - May 4th 2012 - with a couple of things in our thoughts as ways to raise the extra £2,300 we need, including a skydive by the brothers Wyse!! So if anyone out there can think of anything they would like to do to help us reach our target, or if there are anymore generous donations hiding out there, please let me know by responding to this post, text or call me on 07825788729, facebook or tweet me (@sunners14).

On the actual laptop again this time so another chance to post some up-to-date snaps of our little star for those of you not already sick of me splashing them all over facebook! Cheers all, and happy 2012 to you from the three of us.

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!!