Chloe's MVR story

[Emma]

I was just writing Chloe's update (after 3 years!) for an organisation over here called Heartline who have a magazine that goes out to parents of heart children and read through the story i wrote about her just after valve replacement. I realised how many bits i had got wrong (including saying that warfarin thinned the blood - DUH!! lol) and how naive i was about it all still back then - even after 18 months after diagnosis! It actually brought back a lot of painful memories to read it all.
Anyway, I don't think I have ever posted her full story on here, so if you are interested (I warn you - it's not a short story but any stretch of the imagination!!!) then this is where you can see it...

go to...

www.heartline.org.uk

then click on 'What's new'
scroll down until you get to the issues of the magazine and Chloe's story is in issues 54, 55 and 56.

And I have her update to be published too - the editor of the mag asked me to do it about coaguchek and warfarin etc (now I actually know the facts about it!) so i have that if anyone would like it.
Please don't feel that you have to look, just thought i would post about it incase.
Emma
xxx

 

[Ross]

Gottem saved to my desktop! Thanks.

 

[Mary]

Thanks Emma.
Chloe's story serves to keep my problems in perspective.
Mary

 

[Emma]

Thankyou both for taking the time to look!!

Nice pic Ross btw!

Emma
xxx

 

[Karlynn]

You should have warned us to have a box of Kleenex when we read Chloe's story. Your life changed instantly in SO many ways that Halloween. Thank you so much for sharing her story with us. What a sparkling child she is. May God continue to bless all of you.

 

[gijanet]

Thank you..........

Thank you..........

Emma, for posting that. Wow! Your story brings back so many unpleasant memories..................BUT I love stories with happy endings. (Course I read some of the others in that issue 56 that broke my heart.........sigh!) Just curious, did your surgeon ever offer you guys a tissue valve as an option? We have not been. Our PC said that tissue valves have not proven to work well in this location in children...........is that what y'all were told, too?

Well, thanks again for sharing your story and your precious little girl with me. Hugs. J.

 

[PapaHappyStar]

Thats an amazing story -- read it when I was falling asleep writing computer code at work ( 2:30 a.m. here ) -- woke me up...

Thanks for writing and sharing it -- your daughter is an amazing person, for one she turned herself over right after being taken off the ventilator -- I definitely couldnt have done that after my first surgery at 32!

Thanks,
Burair

 

[Emma]

awww thankyou all for reading her story and for all your comments on it!! Chloe was a little surprise and totally changed our lives - much for the better!! She is amazing but so are all of you that go through your own traumas with surgeries, illnesses etc and are still here to help others as well!

Janet, we were never offered a tissue valve either. At the time I didn't think to ask as he made it sound like that was the only option but afterwards (when it was of no use to ask! lol) i asked her surgeon and he said the same as you were told - that they don't work in the mitral position in children. Shame in one way, but then I'm not sure I could have handled many more years of worry about when the replacement would be coming up - as I'm sure it would have at some point.

Thankyou again
Emma
xxx

 

[gijanet]

Thanks again, Emma.

Thanks again, Emma.

That makes me feel a bit better about our situation............sigh! I can tell we are getting closer as I am starting to question everything again and am filled with doubt. I still may poll the group.............but, of course, most are adults...............bigger sigh!

Now, I was too tired last night to thoroughly give you a hard time about not knowing you were pregnant..............heehee! Ya know, I have heard stories like yours and never once believed them. I thought, "Yeah, right!" Now I know they must really be true! I just can't imagine going into the ER for gastro distress and coming out with a baby! Me, on the other hand............well, I looked like a beached whale, so I couldn't have possibly not known................BUT Katie was a complete and total surprise, too, at least for a while till I figured it out. I wasn't supposed to be able to have any more children...........so, I was about three months along when I started putting two and two together...........just tired, moody, hungry all the time...........and no period, but I never tracked things like that, so I just knew it had been a while since the last one. Never any morning sickness or anything. Then when I went into my OB's office; he informed me that not only was I pregnant, but I had been pregnant with twins - Katie's twin died early in gestation, but the sac was still there. Well, needless to say, I was a bit stunned...........

Anyway, isn't it amazing how life can truly bless us with the best surprises?
Thanks again so much for sharing! Hugs. J.

 

[Emma]

Janet, I never believed stories like mine before either! LOL
Chloe is a miracle child is all senses of the word. Not only did I have an unexpected baby, but she was an unexpected 'heart' baby - what a way to change your life in 24 hours!
I still cannot believe I didnt know she was there! But she carried back to front - meaning her back was pushing into my back, she had very little water around her, I had periods all through and I was size 12 (size 10 in US i think? - i prefer that, it sounds better!!! hehehehe) when I had her and size 12 after too - no change in size and she was over 9lbs!! Mad eh?! Typical of me though!

Have you been given any choice in Katie's valve type?? Tissue or mechanical I mean? I really didnt realise there was a choice to be made although as I said, (and although I realise I speak with the knowledge of hindsight!!) I'm sure we would have gone mechanical to attempt to avoid future surgeries anyway. But that is simply my preference and opinion - this is something I know you will make the best decision on for Katie and what will be best for her - whether that be mechanical or tissue valve.
I do understand your worries though - I've been there and I'm here for you whenever you need me!

Love Emma
xxx