Jovie's Big Day I

Away from current grumbles about how yesterday went so tits up, a little message just to say a HUGE thank you to everyone who sent well wishes, cards and presents for Jovie's birthday last week.

The 'three-day' birthday celebrations were hands down three of the best days of our lives and we enjoyed every minute of the celebrations. Jovie had a really great time at her party, and enjoyed watching her uncle simon leap out of a plane on Sunday on behalf of Ronald McDonald House.

It was a birthday we at times only dared to look forward to and it turned out to be better than even we hoped for. Thanks to everyone involved... send your suggestions on how to top it in 2013 on a postcard please!

Jovie's Big Day II

Those of you that know me will know that generally speaking Im a fairly laid back guy. Usually it takes a lot for me to really take exception with something, and id like to think that most of the time i give people the benefit of the doubt.

Id also like to think that this has been the case throughout Jovies life.

While she was in hospital I think it was pretty reasonable and understanding of myself and Lorna NOT to kick up a fuss when she was fed out of date milk. Or make a complaint after Jovie was given a seizure by drugs she was continually given for a condition she didn't even have (and had next to no symptoms of). We were even understanding and forgiving when our concerns were ignored about her initial trachey which then turned out to be the wrong size, nearly killing her in the process.

However, yesterday took the piss one step too far.

Readers of this blog may recall previous references to the often non existent communication at BCH, which in the past has led to regular, if insignificant annoyance. The example of the bag of someone else's toys forever finding its way back into Jovies room, despite numerous pleas for it to be removed being a prime example. More recently the no-showing of carers at night being another.

Yesterday was all set to be the next big step in Jovies development. Two days in hospital planned over a month ago, to among other things, increase her time off the vent and to change the size of her tube. It turned out to be the biggest example of unorganized incompetence i have ever had the misfortune of witnessing in my life.

With the plan to test Jovie off her vent all day we arrived at 9am as requested to be met with surprise on a ward we'd never been on before, and were frankly bemused to be on. After first telling us we were indeed on the wrong ward then to be told in fact we were on the right one, we were informed there were no beds ready yet and we'd have to wait. Fair enough. (At this early stage there is no sign of any of Jovies doctors or staff we were familiar with.)

Hours later and with concern building about a) Jovie being left on dry circuit/off vent (which should only currently be for 6 hours) and b) with when the time of vent test would begin, we are told a bed would be ready soon and told to grab some lunch and come back. Fair enough again i suppose (still not even a sighting of Jovies docs - who, so we were told would all been in to see her).

By 2pm Jovie had been off her wet circuit for 6 hours and still we had no room and no clear indication of what was going on. Two hours later and after more questions from us we are told a room is ready and docs are on their way to see us. By 430 we are first discussing going home, with Jovie now pushing 3hrs off her wet circuit than we'd normally allow (or that this hospital had instructed).

Finally at nearly 5pm we get a room. So the day is wasted and Jovies docs are still nowhere to be seen but at least we have her in a room and can sort her stuff for the following day. At this point the true disorganisation of our visit is revealed.

Turns out they don't have a wet circuit on the ward (raising the question again as to why we are bloody on it) and then they announce there is nobody on staff to watch Jovie. The nurse in charge is even surprised when we explain she requires constant supervision, as if her entire condition is a mystery to them. Unbelievable.

To truly appreciate the severity of the final straw, its worth remembering that when Jovie first had her trachey it was a 4.0 size. We were assured numerous times it was working and a perfect fit, yet it seemed wrong to us and Jovie wasn't herself. It turned out it was not only not ventilating properly but actually choking her, to the point it very nearly killed her and only the presence of an amazing doctor on intensive care saved her life. Jovies current tube is a 4.5. So naturally we were very concerned about the prospect of going down a size, but knowing we need to in order to hear her speak we agreed to it under the proviso that it was done safely and with precautions to ensure everything went smoothly. (To the extreme we called a few weeks before to reiterate this and to check they had the right tubes, which they didn't!!)

So when it was suggested a doctor was going to drop in at 6pm in the evening, onto a ward with no one-to-one care, none of Jovies equipment and no sign of anyone familiar with Jovies condition and history to change her tube, to say enough was enough is a massive understatement.

At this point, we packed up and left. It was bad enough, but acceptable in a busy hospital, that we didn't get a bed for so long. But to not even have a clear msg from Jovies doctors (who we were initially told would be there, and who through the day we were told were then weren't even in the hospital), and to be on a ward without the adequate equipment or staff to look after Jovie was just utterly ridiculous.

After sleeping on it and writing out in detail what happened, we don't just feel annoyed about the whole fuck up, but worried too. We have to rely on BCH in emergencies. We need these developments to help move Jovies progression on. This raises way more questions than i care to face right now to be honest. A seriously low point in this whole experience for all of us.

52 weeks, 365 days, 8760 hours, 525,600 minutes, 31,526,000 seconds...

In four days time Jovie Caroline Wyse will have been with us for one year.

365 days since Lorna went into a Jeremy Kyle induced early labour and was rushed in to Worcestershire Royal Hospital. An emergency C section later and we had a beautiful little girl. I always knew this moment would change my life of course. Having a child even in the best of circumstances is life altering, having a little girl they say makes you into a real man. I never would have imagined in my life wildest nightmares or thoughts however the agony we would go through before we finally got to take that special little girl home. Yet while that particular chapter of our lives is behind us, with Jovies very special first birthday on the horizon, it seemed only right that i should update on how things have been going.

From a medical point of view, very little has changed in reality. Jovie remains fully ventilated through her trachey for the majority of the time, spending no more than three hours in one go a day off her vent. She is still fed milk through the gastro tube in her belly. We have still never really heard her cry, laugh or speak. But what we have got is an amazing, developing, wonderful, smart as a button daughter. One who has given life more meaning than i ever thought it could have. Yes i still obsess over football and my golf handicap. Yes Lorna still spends most my money on clothes and her nails. But life is so irreversibly different now, that Jovie has become our life and soul.

Perhaps her condition and what we have already been through together strengthens this feeling, perhaps its just what being a parent is all about. Whatever it is, as Jovie celebrates 6 months at home and approaches a momentous birthday at times we feared would never come, i can't help but feel humbled, honoured and excited.

Following the birthday celebrations of the decade Jovie is back to brum children's for various tests and challenges to see if we can extend her time off the vent, and hopefully fit a speaking valve to her trachey. Exciting times, but nervous ones too. Life at home is almost too good to want to interrupt it with another stay, albeit a short one, back in hospital. Its a place i quietly hoped we'd never return to, but always knew we had to.

On the development side of things, its always tempting to compare kids of similar ages. I often hear others doing this. Perhaps Im lucky in that my previous experience of babies consists of watching Wallace and Gromit over and over while being a paid to babysit. As far as Im concerned Jovie is coming along great. Sitting up perfectly, rolling over, getting on her knees, clapping and smiling on cue and throwing the most adorable strops when she sees something she wants (gets that from her mother i suppose). She's not quite standing but is showing early signs of good strength in her legs. Crawling is tricky due to the tube, so its more of a back shuffle at the moment. She has two monster teeth in the bottom at the front of her mouth, kind of like a hippo! She recognises and points to mummy and daddy, kisses and claps when asked and is generally still as happy as ever.

From a personal perspective. I hope Im doing a good job as a dad, Im certainly enjoying it, more than i ever thought i would. Lorn is doing amazing too, Im really very proud of them both. Due to the way things are in many ways we have a huge amount to deal with ourselves at times and Lorn has been fantastic for Jovie and for me.

Our fundraising goal of 5k for Ronald McDonald has been achieved, huge thanks to those involved. Particularly the huge contribution from Nigel Wilson and everyone at my previous work. More updates on that to follow soon...

In just four days time it will be Jovies birthday. It is impossible for me to convey in words how amazing this is for us. Despite the time in hospital, despite the horrible dark days we went through its been the best year of my whole life.

As for the big day itself, some quality time with my girls is on the agenda. Saturday we are holding an all day open house party, food, drink and questionable banter in good supply. Please feel free to drop by anytime from 12 to wish the little pie happy birthday. Alternatively/as well we will be sinking a few in Jovies honour a the Marwood from 930ish Saturday night so come along and join us there.      

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!