CHD Awareness Week 7 - 14 February.

CHD Awareness week 7 - 14 February


Imagine the scene, after years of trying, (with some heartbeaks inbetween) along comes the long awaited Little Leon after a reasonably uneventful pregnancy, Arriving on the 7th December. to all intents and purposes Mother and baby are doing "well".

















So we spend the day telling friends, family and in all honesty, anyone who would listen about the new arrival and thinking how lucky we were. So Helen & Leon Stay in hospital overnight and I go home to get my "last" night of sleep before we bring him home the next day.

Or at least that was the plan...........

The next day it all goes pear shaped. Leon has a lousy night and wouldn't feed, the Breast Feeding stasi had pretty much blamed Helen and said there was no problem she just had to try harder!  (But that's a whole other story!!!) Luckily for us a rather observant Paediatrician had picked up that something "wasn't quite right" and wanted to check out a few things, so they would just take him to SCBU and do a few checks. Whilst a little concerned we didn't really think that much of it. It was only when I went down to find out what was happening and when we could go home, i was met with a a group of very concerned medical staff, crowded round an incubator all looking very concerned and having animated discussions. They advised me that they were tyring to get an Intensive care bed and that we would be transferred to Leeds general Infirmary, I didn't really take in what they were saying, it just didn't make sense.
How serious is it? i asked,  "expect the worse" they said.... Words, no parent should ever have to hear.
Within an hour or so the embrace team arrived, Leon was placed in the space age pod and blue lighted, we followed, i don't remember the drive or much else to be honest.

The next few days are a blur, Leon was in HDU for a few weeks and in hospital for quite a while.

He was Diagnosed with Tetralogy of Fallot, ASD, pulmonary stenosis and a PDA.

At six months old he underwent a 14 hour operation to repair some of the main issues and has had further procedures, all of which documented on the blog  http://www.little-leon.blogspot.com and elsewhere.

We were lucky, yes, lucky. Leon has survived and, whilst he will need more surgery. he is in reasonably good health. The harsh reality is that Congenital Heart Defects are the biggest child killer of all, more than all the cancers put together, but get relatively little funding. CHD is more common than you think, Approx 1 in 100 kids will have some form of a CHD, Leon's condition is one of the rarer ones, but, it is more than likely you will know some-one who is affected by it.

Help us to raise awareness, wear Red on Friday 7th, Share this blog around during the week, don't be afraid to ask questions about it. If you can spare a few quid donate to either the CHSF, or  message me and i;ll send you details,

Leon Says Thanks for all the support over the last three years...

Little Leons Mummy reflects a little.........

 

Little Leons Mummy here :D

 

He keeps telling me off for not updating more regularly, but you know, its more fun playing with Leon and the family Moo, the weather is good and we can go out. All too soon the cold weather will sneak up on us and it will be back to worrying about colds and bugs putting us back in the hosptial.   So I have started a little notebook of crafts and games we can play during the winter.    Maybe I can do a craft or activity of the week, share our adventures so other people can join in :D   The plan at the moment is to turn our damp stuff filled cellar into a little play room for us so we can get messy, watch films, eat popcorn, hang out.......

 

Woooo Hoooo!  Tractor!



 



I was looking at a post on Face book this morning, after I had mopped up my tears I got to thinking about all the parents who are currently walking a road that they would never ever have taken if it wasnt for the gift of their children..........  It was Reubens Mummy who made me cry this morning, Reuben had an aggessive brain tumor.... Reubens Retreat is set up in his memory, his family are fundraising to be able to provide a retreat for bereaved parents and children and families of children with life limiting conditions......  http://www.reubensretreat.org  

 

Carren Bell set up Lagan's foundation, if Lagan had been born with a perfect heart the foundation wouldnt exsist.  I volunteer for Lagan's, we provide short term respite care for families with children between 0 and 5 years who have Congential Heart Defects and or Feeding issues. Hospital sitting service, because even if your child is asleep or sedated..... you just sit there for days on end..... We take over that role of sitter for a while so parents can eat, shower, sleep and just try for a couple of hours at least to get out into the 'normal' world that we all left behind when we entered the world of Congenital Heart Defects!  http://www.lagans.org.uk/

 

Harry Mosleys Mummy is still fundraising and making his lovely bracelets.  Harry started 'Help Harry Help Others'  and thats exactly what his family continue to do.   Harry was mad about Sponge Bob Square pants :D  Now, every time I see Sponge Bob I think of Harry.   Harry also suffered from a brain tumour.   http://hhho.org.uk/ 

 

Fellow heart parents Jon and Andrea have started Zip Media, a path Jon said was born out of his experiences with his daughter being a heart baby with other complications, not to mention fighting the good fight to keep Leeds General Infirmary Childrens Cardiac services in Leeds.

 

Me starting Leons Heart making bespoke handbags and using Character bears to raise the profile of CHD in babies.  www.leonsheart.com   If Leon had been heart healthy life would be so very different.  I would probably be working full time and banging my head against the wall, feeling guilty that Leon was in nursery while I worked myself half past dead........ Well now my priorities are different, I live for my family not for work and Leons Heart is like having another little baby, needs feeding and nurturing to thrive :D  So far, both my babies are doing fine.

 

So, thats us, parents of children with life limiting conditions, moving forward in a way only we can........

i can do this to Daddy and he laughs woo, try it when you see him!

 

Er Mummy..... do I look cute in this wide angle?



I promise Little Leon to make more of an effort in sharing his adventures, in fact, I think you should watch out for Talbot the Travelling bear, he is preparing for an adventure, he has his new hat, shirt and rucksac, he is packing his map, toothbrush and a letter of introduction.  Sadly the Cot bed gang have spent all the growls on take aways, so he has to thumb lifts and rely on host families to take him round the country and maybe around the world.  So if anyone wants to be a host family for Talbot and take him on some adventures, take a photograph and upload it on his FB page, let us know. 

Now its time to say night night, see you all soon, laters as Leon now says.

Love Mummy Daddy and Leon xxx