A Letter

Dear Baby,

You don't know me. Not to see, anyway. You've definitely heard me, and I am one of the fools that puts my hand over you while your mummy sleeps at night, but you've not seen me. Not yet.

I've seen you, though. I saw you before you were really anything, and I've seen you when you were ever so tiny. And just a few times, I have felt you nudge against my hand while you wiggle around inside mummy.

And tomorrow, I will see you again. But this time, I am going to be very nervous. Tomorrow, we are going to see a special doctor. Part of my brain - the logical part - keeps telling me that there is no real reason to see this special doctor. That I am just worrying over nothing. That it's going to be a waste of time. But the other part of my brain - the bigger, over-powering, illogical part that makes all my decisions and sets out my thoughts...

That's the part that's winning.

You see, ten years ago, your big sister Bethany left. You will hear all about her as you grow, I promise. But because of what was wrong with her, the illogical part of my brain is now screaming and kicking and banging against its bars. And tomorrow, we are going into London for the special doctor to make sure your heart and tummy is OK.

And that, my beautiful little Tadpole, is why I will be a nervous wreck for the next 24 hours. I've never touched you, you've never seen me, and I've never heard you make a sound, but I am filled with so much love and worry for you, I am close to bursting. And that we are going to see a Fetal Cardiologist is killing me on the inside, because I am so scared of the What If that my brain is doing. It doesn't mean I will love you any less, it just means I will have to be bigger and braver than ever, and hold your hand, and your mummys hand, and know that with these special doctors, you will be in the best possible care ever.

That doesn't mean I won't be worried. Or scared. Or angry. But I will be there for you every single step of the way. And I will love you as much as it is possible to love someone, if not more.

Logically, I know that you are going to be fine. Logically, I know that the doctor will check you from head to toe tomorrow - and aside from being able to see your beautiful face on the screen, I know tomorrow will tell us nothing more than you are growing into a big strong little person.

But for the next 24 hours, please excuse your daddy, and his crazy, strange, neurotic behaviour. I might sit holding you more than normal, or drifting off to places in my head. But logically, I know that this time tomorrow, I will be laughing at how silly I am, and how I got so worked up over nothing.

Night night baby, with love,

Daddy
x

Jessica Jensen

I don't often put my feet into the pool of Congenital Heart Defects (CHD) very often any more.  Mainly, I don't feel I can offer much to people that are in the same position I was almost ten years ago...  "Hi, my name is Dan, sorry you're having to deal with all this, I know how you feel, but my daughter passed away..."

Not really a message of hope for people new to the world of heart defects.

I am still on a couple of lists, and I do still read through the messages, but for the most part, I am a quiet bunny.

Back in October 2000 when I first landed with a bump in the world of CHDs, the first list I joined was PDheart, a US-based support group with a scattering of International members, one of the first people to welcome me was Nancy.  Back then, her daughter Jessica was still young, but she told me her story and everything they've been through, and ended with the words "She is classed as terminal"

Over the years, we got quite close, and every now and then would get in trouble with list administrators for having conversations that veered off on considerable tangents.  I'm sure there are some that recall the great Teletubbie Debate that disrupted an entire list for almost 24 hours... Oops.

Nancy and myself often chatted on instant messengers, resorting to voice chat occasionally.  Depending on the time of day - bare in mind she's in Arizona, and I'm in England - either my kids would be in bed, or her lot would be in bed, but every now and then, either Bethy would join in, or Jessica would come on.

We'd chat for ages, mainly about England, Harry Potter, Hogwarts, Power Rangers...

It's not often that I am lost for words, but recently, the updates of Jessica have been steadily getting worse. I've jumped on every email from Nancy, reading what's going on.  The last message from her I've copied below (with permission):

Jessica is continuing to decline. The last time she ate anything solid was last Sunday, Aug 1st. She has had several days of being comfortable 99% of the time. I just can't remember when she was so peaceful... she's been in so much pain for so many years. She has been sleeping more and becoming more withdrawn the last couple of days. My parents were able to arrive into town safely and have been here to visit with Jess twice. My sister, (who's son passed away almost 2 years ago from a brain tumor) flew into town and came to see us also. Jessica has a couple of visitors come by and she didn't really open her eyes much for them but did a little wave with her fingers when they left. When I was talking on the phone, I mentioned that my sister was coming into town she smiled. As soon as my sister came her eyes flew open and she adjusted herself in her bed so she could see her aunt. We haven't seen my sister in almost 3 years. It's soooooo good to have her in town for a few days.

Jessica has pretty much been nodding or shaking her head and even signing a few words instead of speaking but a few hours ago (about midnight) she perked up and started talking to me. Of course she would... it's party time at midnight. hehe! Poor kid threw up earlier in the evening (and that woke her up!)... mostly dry heaves. I called the hospice nurse and they want me to put the anti-nausea lotion on her wrist every 4 hours 24/7 if possible. That way we can keep on top of the nausea. I've also noticed that instead of fluid building up in her feet and ankles, she's got some building up in her knees. She is also quite congested at times. Most likely due to lack of activity but she is too weak to do anything except to go potty (which is a portable one that we bring into her room and it's 1-2 steps for her to take at most.

We are having to shift our thinking. All these years I've done my best to keep her alive and as healthy as possible. Now the goal is for her die as peacefully and comfortably as possible. She has been going through the dying stages for several months already - we just didn't know it due to her CHF keeping the weight on. But there's nothing that we could have done anyway. The hospice nurse explained to me that the GI doctor was wrong when he said that Jessica was starving and that we needed to get her to eat. He said that most doctors have been trained to save lives and concentrate on that so much that sometimes they forget that dying is also a natural part of life... if the body is dying it doesn't need food and it will reject it... just like she did Monday night. Vomiting, high fever, etc.... we had been trying to push her to eat and she even got mad and yelled at me, "why is everyone trying to make me eat? I can't eat". A little while ago, after she started talking, she asked me what I thought she could eat. I said that I wasn't sure that she should eat because I didn't want her to throw up again. She said, "I didnt eat today or yesterday so I'm worried" I told her that her body doesn't need to eat right now and that I could get her more soda, popcicle, jello.... she asked for Root Beer. She seemed relieved that I wasn't pushing her to eat and that it was ok not to. She isn't aware of time as much anymore and I was surprised that she thought it had only been two days since she had eaten anything. It's ok. We are just playing it by ear and loving her as much as possible.

Thank you all so much for your lovely emails. I have received quite a few privately and I appreciate each and every one. I pray that God continues to bless her with peace and comfort and that she is able to go on to her new life with joy in her heart knowing that so many people love her. She has her cousin who will greet her (and whom she dreams about every night - they usually go to Disneyland in her dreams)... so I know she won't be alone. There are many others who will be there for her too.

Love and prayers,
Nancy

I read that email over and over, and wanted to mail Nancy, but every time I opened a new mail, I just sat staring, not sure exactly what to write.  I did eventually fire a mail off to her, but I was truly lost for words.  Really, I still am.

The day Bethy died - the very morning - Nancy phoned Guys Hospital as she had been reading the updates whirling around the world and wanted to speak to me.  We chatted for... I have no idea how long...  I don't really remember the conversation, but that's not the point.

Nancy, I know I've already mailed you, but I will say it again.  Jessica, you and your whole family are in my thoughts.  I am sending good vibes and everything your way.  I wish I could do more for you, I wish I could say something to help or make things better, but know that you are all on my mind.

Please feel free to use the comment section to send her messages, or visit her blog, Are We Having Fun Yet.  Jessica loves getting comments too :)

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!