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This blog has no title because i cant find the words to name it , maybe because im really having a confusing day really. this blog may even confuse you sorry if it does...

I have so many feeling running around my head and my body feels weird and has done for 65 days , the word grief what does that really mean cos i know how I FEEL but i cant speak for any body else , but i know other people feel grief , not just for them selves , but for their family and their friends. I know i feel empty , confused , angry , lonely (but no i am not), tired but wired, i ache , im hungry but cant eat a whole meal, wanting feeling not knowing what you want but then u realise what you want , you want something that is not possible and brain-dead but have soo many unanswered question that can never be answered...

My mum always said to me it don't matter how big your problems are there's always someone out there feeling the same or may even be worse but we can never really understand how they feel because all or problems are different and people feel different things . Just because i hurt please dont think you cant share your hurt with me,

In the last 10 months i have met some outstanding people in my life and not in the best circumstances , but do you not i would not change any of it for the world , they are part of my life , my story they have become my friends ,my ears , they have just been themselves ..

I really want to thank them personally .If i forget people i am sorry

Dr Wilf Kelsall , our amazing cardiac dr , he was always there for us , always honest and treat us like adults and kept us informed of everything and all my repeated and weird questions. He is a man i will remember you forever.

Kristi Bono Pena - The first fellow mum , who found me when i was lost and on my own and she introduced to a family of people and i became more aware i am not the only one , but also she has been my friend , she has been kind to me, compassionate to me , caring , loving prayers sent my way , she supported me through confusing and life changing time , i want to thank her from the bottom of my heart Love you , xxxxxxxxxxxx

Kristine and Cora - I have only recently got to know them through devestating circumstances, they give me hope , inspiration they bring me joy, tears , love, and most of all they show me that people can change the world and saves lives . love to you both xxxx


MANY MANY CHD friends,family I wish we never had to meet like this , it nots what we planned , but getting to know you all has brought me knowledge , some level of understanding, and i dont think i would change it.. xx This was our journey and we are living it separately but together.. Love to you all.xxxx

MY fb friends , whom have been very understanding patient with me help us all spread awareness, with all the blogs and pages i have posted , YOU all have helped me more than you could understand and the many people who have sponsored us , YOU have raised £585 in Isla name and Many many thanks xxxx

To my friends , who have been them selves and supported me , tried to understand me , tried to make me laugh , help raise money , put things together for me , brought me chocolate and ice cream. just been you has been enough I love you all very much

AND MY FAMILY , well for just being my family , words can not describe the love i feel for you , you have kept me going through good times and bad times i am soo glad i have a family as wonderful as,LOVE you very much

THANKS EVERYONE YOU All HELPING Xxxxxxxx




K

Isla story and Chd Awareness

Isla-rose hider -pettit was born with chd of severe dilated cardiomyopthy and valve regurgitation . she gave me 8-1/2 wonderful months . drs were amazed she survied a day . athanks to all for ure support and work we are all tuely amazing . and thanks for letting me share her with people. Isla and freya wher born on 23rd march 09 MY BEAUTIFUL TWINS Isla-Rose At 37 weeks i was my labour was induced because my body was having hard time holding the girls so my waters where broke with a cream and i was in labour after a minute took very quick and i was in labour having contractions for 1-2 mins apart for 8 hours but only 3cm dilated . Then the difficulties came in twin 1 (isla) heart rate kept dropping and raising very quickly so the drs decided i need to have a emergency c section . iIwas rushed down to theatre where the girls where born Isla 4lb 10 and Freya 5lb11 at 8 56 and 859pmIsla was born with the cord around her neck and took longer to respond than freya , the girsl where taken off fed , dressed and cleaned by thier dad while i was in recovery , At around 11pm i was taken onto the ward to see my babies freya was still awake so i had a hold but isla was sleeping peacefully soo i thought i would have cuddle in the morning, so i went off to sleep as my babies where safe , i was awoke at 248 i remmber it soo clearly isla had been taken into the special care baby unit because she was not feeding very well so she was given a ng tube , but seemed to be still struggling with her breathing ,so they gave her a ecg and pulse oximetry teat and found that her heart rate was still very high , she was then moved to picu where she needed assistance with her breathing and also isla heart was failing we where told at our hospital they did not have the care she needed so she was moved to the royal brompton heart hospital in london , where i stayed with her sister still recovering from my operation and freya needed to to have a echo to see if they may be a problem due to isla having a problem freya was born with two holes in her heart … So I was told that Isla was taking it very badly and she might not make the journey so i said goodbye to my baby and prayed to god to keep her safe and i would be with her soon . Its Thursday the girls are 3 day old and i only have freya with me and rob is in london with isla who is bieng assisted with her breathing at 80% oxygen and 20% isla and on a cocktail of medicines to keep her stable and having lots of test done and any may echo where it was the dx that Isla had severe dilated cardiomyopathy which means the hear it extremely big and the lining around isla heart is very floppy and thin and her heart is very over-active and she aslo had mild valve regurgitation which mean she she pumps some of her blood into her left ventricle which sends bloods too the lungs . Which mean theres nothing u can do for it not operation can fix it only transplant and she was too small any way and the odds are quite low off a dmc baby to survive the procedure from then on after me and freya arrived isla was getting better she was coming off the ventelator slowly and recovering we where told we could go back to our local hospital they where amazed at her she was doing very well recovering well from her heart faliure , we arrived back at our local hospital on the tuesday and isla was gaining weight slowly and on a mixture of medicines captori frusimide l,spirolactone, dalavit, iron , asprin , she came off the ventelato rat 12 days old she was fighting to say with us. soon enough we where getting ready to take her home all we had she was 3 weeks old when we took her her home is was the most nervous days of my lifes she was on a ng tube and i learnt how to do all her meds and cpr just in case . After another 2 weeks off bieng at home and many echos and esgs later the ng tube was removed it was howing that she was getting better she was growing into her heart which can happen so she is growing nicely and we are amazed and happy news too freya holes in her heart have closed,life was getting better , she was beating the odds so the girls are growing up very nicly we are having our routine visits to the cards all is going well and we get a letter from great ormand street childrens hospital from the speacialist there he wants too see isla fro a check , so we go its october 16th and we are are told after a long day of test for isla that isla heart has got extremly bigger in leymens terms isla now 15lb her heart was 6 times bigger than ment to be she was getting weaker and she could deteriorate very quickly and our option was to get her prepared for a heart transpalnt but sll we could do is feed her up and give her beta blockers , so thats what we did thats all we could do Isla awas a happy child lived life to the full too look at her you would have not known she was poorly she did not look it , or act it she was always very very happy and lived life too the full she was a loving sister, daughter , granddaughter and family member On 10th of december isla was admitted in to hospital after she became very sleepy and had caught a cold and cough and bieng very sick , Isla had caught broncitus and rhino virus . She was kept in the ward for three day but she was slowly getting worse and now needed assitant with her breathing and kept on a constant , but she was not holding her feed and losing weight fast but was till very happy aware of everything going on around her the nurses called her smilsa all she did was smile but yet she was soo poorly., on monday she was taken in to intesive care where she was bieng assisted with her breathing and our card dr came to us and made us all ware of what was going on and they where going to try some antibiotics to try and help her with the infection and may have to put her on full ventilation and put her in a coma . \Isla took to the the oxygen well and was very stable so we where sent home after being in the same clothes for 3days and needed to tend to her sister she needed her mummy too .. On tuesday i was back at the hospital after rounds and stayed all day isla was doing great responding having cuddles with mummy getting better we thought back feeds , so it got to 9pm isla sleepy peacfully we went home .. its was 9.46 i remember it to the minute i got a sick feeling something ( a mother instict ) was not right i could not find my phone so i sent rob back to the hospital just to check i needed him to for my sanity freya was asleep so i stayed home.. Rob arrived at the hospital and called me straight away isla had not taken to the antibiotics very well and was slowly dieng and posioning her lungs with carbon dioxide they where just about to call as rob arrived , i went up to the hospital with my mum and we had to make a choice it was either isla slowly poison herself or take the small chance that she will take to the coma , so i prayed to god that he keep her safe and if she needed to be with him then he take her when she is not in pain and i said tto my baby to take care and if she want to be strong and stay but if her heart is not strong enough she needs to be with angels , so i made the the choice to try to ventilate her and put her into the coma … Isla died at 1 46 am wedneday morning 16-12-09 after 35mins off them trying to bring her back she put up a very good fight till the end and was very happy and i was blessed to have her , i have learned more in the 10 months of having children than i knew in the whole 23 years of my life . i am very proud of my children and thankful for everything they have givem me and now i am going to tell isla story to make people aware that chd is a big problem in this world

• Dilated cardiomyopthy only affect 2 in 10,000 babies
• Dilated cardiomyopathy (DCM): It is also known as congestive cardiomyopathy. Dilated cardiomyopathy is most notable for an enlarged heart that contracts poorly.
• Dilated cardiomyopthy can lead to sudden death 4000 babies donot live to see thier 1st birthday

many thanks for reading our story lets make people aware of our babies

Sisters Love pt 1

THe loved you had for one another astounded me even when you where in my belly, you where sisters you, would fight for space i could feel u having feet fights which i imagined that you would fight forever, but the love you had for one another and the connection was unreal.


When you where born mummy was the proudest i had ever been im my life and i don't think i will ever be as proud of something as i am of my babies ,

I Think you had a instant connection even though you where split up Isla went to a heart hospital 100 miles away with daddy and mummy stayed with Freya because i had a operation and you where only 12 hours old i was not aloud any where, but there was a connection you would wake at the same time and moan and even sleep the same and when mummy and Freya arrived to Isla and Daddy ,thats when Isla got better she fought to stay with her sister and that where the love and connection really began ,

Freya - our astounding beautiful , content loving wonderful sister the loved she had for Isla amazed me it was like she knew Isla was poorly she would sit back and just relax and , rarely cried , it like she knew she was poorly and knew Isla needed more attention which she did but Freya would just carry on talking to her self or babble to Isla ,

Isla- our brave , courages , bashful , beautiful sister , the love she had for freya was a very a much sisters love , she would shout bash her sister ,sisters fought but also she was very loving to one another they would stroke each other lean on each other when tired , holding hands was my favourite

Having twins was the most wonderful ,tiring , rewarding , eventuful time of my life i was only blessed of 8 months a 23 day of being a mother of twins on earth , but that connection will never be lost
Now Isla spirit will live on in freya.
YOu are half to a whole , one of two always in our hearts we will always love you xxx

I love you too the moon and back OUR STORY

Its Been 62 days since god gave you your wings and there's not a day that i do not think of you , soo mummy got inspiration from some fellow CHD mummies to maybe just write things down , i started something but this is another way to let people know about you and how you and your sister light up my life ,So I Have decided to write the story i told you everyday while you where here Guess how much i love you

Little Nutbrown Hare was going to bed held on tight to Big Nutbrown Hare’s very long ears. He wanted to be sure that Big Nutbrown Hare was listening.

“Guess how much I love you” he said.

“I don’t think I could guess that” said Big Nutbrown Hare.

“This much” said Little Nutbrown Hare stretching out his arms as wide as he could go.

Big Nutbrown Hare have even longer arms. “But I love you this much” he said.

“Hmmm. That’s a lot” thought Little Nutbrown Hare

“I love you as high as I can reach” said Little Nutbrown Hare.

“I love you as high as I can reach” said Big Nutbrown Hare.

“That is very high” thought Little Nutbrown Hare. “I wish I had arms like that”

Then Little Nutbrown Hare had a good idea. He tumbled upside down then reached up the tree trunk with his feet. “I love you all the way up to my toes” he said.

“And I love you up to your toes” said Big Nutbrown Hare swinging him up over his head.

“I love you as I high as I can hop” laughed Little Nutbrown Hare, bouncing up and down.

“But I love you as high as I can hop” smiled Big Nutbrown Hare---and he hopped so high that his ears touched the branches above.

“That’s good hopping”, thought Little Nutbrown Hare. “I wish I could hop like that”.

“I love you all the way down the lane as far as the river”, cried Little Nutbrown Hare.

“I love you across the river and over the hills”, said Big Nutbrown Hare.

“That’s very far,” thought Little Nutbrown Hare. He was almost too sleepy to think anymore. Then he looked beyond the thornbushes, out into the big dark night. Nothing could be farther than the sky.

“I love you right up to the moon” he said and closed his eyes.

“Oh that’s far,’ said Big Nutbrown Hare. “That’s very, very far”

Big Nutbrown Hare settled Little Nutbrown Hare into his bed of leaves. He leaned over and kissed him goodnight. Then he laid down close by and whispered with a smile. “I love you right up to the moon---and back”. Good night my sweet angel love you xxxxxxxxxxxxxxxxxxxxx