Baby Rae Update

Just a quick update... Information I am getting is, I think, 3rd hand at best. The good news is they have decided that whatever is going on is NOT urgent enough to whisk her straight to Guys/St Thomas' Hospital - usually the nasty CHDs are shot over by ambulance when necessary, so that's something.

As for her stopping breathing, or having problems breathing, again, I've heard two versions, and I'm not even sure if she's home or still in the local hospital - I THINK home. So again, good stuff.

They are getting an appointment for the Paediatric Cardiology team which, from personal experience, are top bananas and know their stuff, so they will be in the best hands. Once they've been, have a diagnosis, then I will shout for your CHD Peoples for information. I still don't know if it's the Pulmonary or Aortic Valve causing the shit, or what the actual problem is, but once I know, I will inform the world.

Then you can start working for me, my pretty little monkeys.

Congenital Heart Defects Suck

People that have read my blog for more than a week will know that we lost Bethy to a series of Congenital Heart Defects (CHD). They suck. They suck the big fat one.

I just had a call from Jo who needed some advice. Turns out lightning has struck the family a second time. Jo's older brother Grant had a baby recently, She stopped breathing last night, and it turns out that one of the valves in her heart is either sticking, or not big enough or something similar.

CHD Strikes again. Let's see the geneticists say they're no connection.

Anyway, Baby Rae has been referred to Guys - not sure for when - and obviously Mummy & Daddy are in a state. As is usual with this community, I will be shouting for information in the coming days. Valves were something I never had any dealings with as Bethy had a series of problems to deal with, valves being the least worrying.

So, valve experts be ready :)

And A Bad Post

I've been blogsurfing this afternoon. I had to after I managed to get everything installed how I wanted. But, during my surfing, I noticed how many of the heart parents out there have published their Congenital Heart Defect Day stories - the tales that brought them into the CHD World.

I almost - for a moment - thought I would do the same. I considered sharing the tales of expecting a sick baby, the trials of raising a sick baby and detailing all the other stuff she went through.

But I can't.

Not because I don't want anyone to read it - far from it. But in the long run, my brain is telling me that the ending of Bethanys story reinforces the point of CHD.

Children die from it. End of story.

I could rattle off statistics and numbers, but you only need to know one statistic. One in every One Hundred babies are born with some for of CHD, ranging from the problems that cause concern, to the problems that mean the baby probably won't survive. And even the conditions that are able to be "stabalised", even those problems can go wrong.

And become fatal.

I don't want your sympathy, I don't want your money. I want you to spread awareness. Tell everyone you know about it. It is the most common of ALL birth defects, yet is hardly common knowledge.


No, I don't do Valentines Day, but Feb 14th is Congenital Heart Defect Awareness Day. Spare a minute, spread the word.

For those that have posted on their blogs about CHD, thank you. I noticed quite a few of you have done it (excluding the Heart Parents out there of course!) so a big thank you to all of them.

So I apologise for not posting about my Bethy. She was a perfect little girl that was taken away too soon, all because of Congenital Heart Defects.

Rant: Liars, Crazy People and Head Cases

Just a note, this could turn into a sweary rant. I haven't really decided yet. I'm angry, but not sure just HOW angry.

If you remember back in late-April, my mood took a turn for the worse. I had read something on a CHD List that hit me close to home and cut me through to the core. I was devastated, and had to deal with it as I didn't want to share with Jo as I knew how badly it would have effected her. I could only say so much on here just in case the author of the email arrived on here and thought I was bad mouthing her, her child, or her situation.

The simple version was this: Her child was in hospital having heart surgery, and as happens, things too a turn for the worse. Reading her mails was like reading my own updates - the problems, the hitches, everything that went wrong was like thinking about Bethany going through it all over again. And then it happened - something caused the childs brain to swell, and the doctors announced he was brain dead. Which is exactly what happened to Bethy.

But.

She refused to accept this, and order more tests, second opinions, and, after a week or so, the child managed to pull through. That was the straw that broke my back - Bethany had the same diagnosis, but WE never ordered tests or second opinions, and it stopped there. But the seed of doubt was well and truly planted in my head. The "What If's" started, the doubt took over, and I shut myself away from everyone and everything without explanation.

A couple of weeks later, the child was taken ill suddenly, and rushed back into hospital, and, sadly, he died.

So now we fast-forward back to now, and the last couple of days, people have been trying to get ahold of me. I noticed on Emma and Other Emmas blog, a post about trolls, but didn't think much of it. The Emma last night tells me something that caught me off guard. The woman made up the entire story. I don't know if the child exists or existed or whatever, but everything she said was a lie.

Today, I am dozing off on the sofa and my mobile rings, and it's Other Emma - she and the head honcho at Heartline have been trying to get a hold of me, and she explained to me all the lies that this person got caught up in, how she contradicted herself, how she changed details, altered major details and generally got trapped in her own lies.

To put it another way - she made up everything, and I had my heart torn out and stamped on because of a LIE.

Who the fuck does she think she is? What sort of person takes something like that and makes up a disaster around it? Seriously, how the hell can someone be so thoughtless. This stupid bitch posted on the UK list and one of the American lists I am on, and I know of at least two other parents that have had to deal with the same thing we did with Bethany. Did they see this persons story? Were they as cut up as I was, believing that this story was true and that there was the smallest inkling of possibility that they had made a mistake?

When I first read her story, I was heartbroken, I felt sick and angry at myself for not pushing for more tests. When I found out that this story was pure fucking fabrication, I was angry. I don't get angry very often, but I am sure if I knew where this person lived, then I would be having some very strong words with her. Assuming it is even a her.

Then there is the Compassionate side of me. Maybe she has a mental condition and needs help? Maybe she DID lose her child that way, and is reliving it all somehow. But Compassionate Dan is currently being beaten with a stick by Hacked Off Dan with a pair of dirty socks forced down his throat.

Part of me is in a mind to email her, to let her know exactly how fucked off I am, how upset I was, how upset I am now. There are some crazy fucks in this world, and it seems that my Crazy Fucker magnet is running at full strength.

Needless to say, I banned AND removed her from my UK List, plus let the owner and moderator of another list know - helpful being chums with people and letting them know they have fuck-heads on their lists!

Who knows, I might find it in myself to forgive this psycho, but I am not sure I can. She basically forced me to relive the last two weeks of Bethys life, but with added angle of making wrong decisions and questioning everything I'd done, said and decided.

So, Where've Ya Been?

Over the last couple of weeks, I've had a few mails and text messages asking exactly where I am, what's up, where've I been, and so on. Well, aside from the stupid lack of internet, and not being able to keep an internet connection for more than half an hour, I've been pretty much keeping to myself.

I've slowly been fading myself off the various support groups for kids with Congenital Heart Defects. I read various things and either feel awful and have old memories dredged up, or I see the worst outcome for someone, or I get jealous. Not jealous exactly - I've never been a jealous sort, but I can't choose the word I want. Reading about a child that has similar defects, goes in and out of surgery, I don't get angry or resentful, I just wish it was Bethys update I was reading. I would never, ever wish any other child ill, please don't think that...

But anyway...

Aside from that, we've been stripping through the house and front garden, cleaning, scrubbing, sorting, sifting. We've been hanging with real friends, or out and about, and generally just chilling out. We're trying to keep up with the little madam as well - she's well engrained into her Terrible Twos and is into everything. She lost Jo's late grandmothers wedding ring that was put away safe. She's emptied pretty much each and every container in the house (and grandparents house). She's uprooted plants, thrown things out the window/down the stairs... She is a terror that has no fear of smacked bums, the naughty step, no dessert...

Now, it makes her sound awful, but she is still beautiful and such like - she is giving perfect cuddles and loves to giggle. She's just a bit of a tearaway at the moment.

Jaysen is doing amazingly well at school. Even though he's only eight, he sat a series of tests a few weeks back that he did a stunning job of. His teacher is really happy with him, and he is on the "Smart Table" in class. He is reading at 10 years 9 months level, not bad considering he's 8 years 6 months, we're happy :)

So yes, with things getting back to normal here finally, I should be around more often. Maybe ;) Tomorrow I will do another Musical Monday, and Friday I will actually remember to do a FaceOff Friday! I'll also get back to my usual Blog-Spamming. I've cut down on the number of blogs I read daily, but you'll still see me around - and I've kept them all in the list on the side.

And for those reading elsewhere and not on 0ddness.co.uk, I've redone the template again. Again-Again ;)

Happy Birthday My Sweet Angel

Today - January 15th - Bethany would have been six years old. She's be in school, be talking, be running around, be doing homework, but most importantly, she'd still be loving life.

This time six years ago - just after 9.30am - Bethy had been born by csection, and we were sitting in the theatre at guys admiring the little moo before Jo was whisked off one way, and Bethy was whisked off the other. In her first five days, the diagnosed her heart issue, added to her heart issue, discovered cancer, discovered the malrotation, and suffered a series of strokes. At two weeks of age, she had surgery on her stomach to untwist it, and to remove the cancer from her adrenal gland. Despite all these problems, she came home after five weeks. The date of her discharge is also one that haunts me. February 21st. The same day she left us.

While she never really grew and was always a tiddler, she was full of love and energy for anyone around. She would cuddle anyone, smile to anyone, and never let anything get in her way. Even when puffed and out of breath, she still had time to smile. The following December aged eleven month - and on Jaysens 3rd birthday she had her first surgery, which gave her something else to show off - her special zipper.

Then, aside from constant appointments with cardiologists, neurologists, oncologists, dieticians and any other specialist that wanted a look, she grew and developed and learned to walk and crawl and generally get on with things, and never ever did she let anything get in her way. Not once did she complain about her meds, having blood taken, sitting still for a scan or anything.

Just before her 4th birthday, we received news that she needed surgery, and at the end of January, just after her birthday we were given two days notice for her operation. Four weeks after her surgery, it was too much, and we had to make that decision...

My love for Bethany has never lessened, diminished or changed, even with her gone. I miss the sound of her laughing, and saying "Meeese!" instead of please, the smile she would give me when I entered the room, and the sheer amount of love that came from her, unconditional and without price. I miss every single thing about my beautiful little girl, and feel sorry for those that never got to meet her, and never got to feel her love radiating upon them.

We miss you, our beautiful little angel. I still see you shaking your ass, every day that we're apart.

Bethy, I love you loads,

-Daddy

The site hosting Bethys magazine article seems to be down at the moment. If you want to read it, you can view it here

And for those that wonder why I always say something like "I See You Baby..." this is the song Bethy used to sing and dance to...


I see you baby.... Every single day...

An Update

Just had a message come through in regards to David, the lad having heart surgery. He had a bit of a rocky night by the sound of things, but as of this evening, he's pulling through really fast.

"In the last hour or so he's improved heaps! Long line has been taken out. Off all IV drugs now, just oral. With lots of help he managed to get out of bed and into a high back chair! Hopefully if he continues this way he'll be on ward 23 tomorrow!"

I'm pretty sure he is actually still in Intensive Care, but the fact he's up and off the IV (Intravenous) stuff is excellent news for all concerned.

Sunrise!

Here I am, sitting at my computer with sunrise fast approaching the East, watching outside as the world slowly starts to wake up and go about their business. At least, I'd see the sunrise were it not for the fact that the sky is filled with icky black clouds. None the less, people are waking up, turning lights on and generally going about their business.

I'm tired today folks, and it's mostly my own doing. I didn't get in till 1am this morning, checked my mail, checked some blogs, went to bed, then spent over an hour trying to sleep, only to wake up - and stay awake - at around 5.30am. However, with Jo sprawled over me, my pillows just so and everything quiet, I laid there for as long as I could, but eventually got up at 6.40am.

So, I've read the news. I've read some blogs. I've read some comics. I've watched a couple of videos. I've replied to some mails. I'm ever so productive at the crack of dawn!

My friend Rosie - who's son has CHD - has been keeping us updated. David has had his pulmonary valve replaced after six hours of surgery, and woke up in ICU fairly well. Seems he's been a bit poorly over night which I am hoping is a reaction to both the drugs and the change in his circulation, plus his heart rhythm has been messing around a bit - which often happens after it's messed around with. Those of you that are praying, keep em coming for them!

So, I've still got to get dressed, iron a shirt for Jaysen, sort out his swimming bag, find his shoes and his book bag that mysteriously vanish each afternoon, feed him and dress him.

I'd probably be less tired had Jo not woken up when I got in, and explained the entire plot to some crappy horror movie!