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Amy Edwards avatar
Amy Edwards

St John's Yorkshire 3 Peaks page

Fundraising for Tiny Lives

40 %
£60.00
raised of £150 target
by 2 supporters
Donate
  • Event: St John's Yorkshire 3 Peaks, 18 Jun 2016

Tiny Lives

We care for sick and premature babies to give every baby the best chance of life

Charity Registration No. 1150178

Story

In August 2013 my little sister Edith was born 13 weeks premature weighing 1lb 2. When I first seen her she was lying in an incubator with a line in her umbilical stump to feed her a liquid called TPN, a tube into her lungs to help her breathe because she was so tiny and her lungs were so underdeveloped that she couldn't breathe for herself. She had lines in her hands and feet and hooked up machines that were bleeping all the time. At this point I wasn't allowed to hold or touch her.

As the days and weeks passed Edith slowly grew bigger and stronger but one day one of the doctors had wanted to see how she managed without the ventilator because she seemed to be doing so well so she was taken off and they tried her on humicare but after a matter of hours Edith's lung collapsed so she had to be put back on the ventilator again. It was discovered that a small duct was still open in her heart so at 6 weeks old weighing 2lb Edith underwent heart surgery and had the duct closed to see if this would help her to come off the ventilator and help her breathe on her own but it didn't work. That's when the doctors discovered that she also had pulmonary hypertension. At 10 weeks old SHE DID IT, she came off the ventilator and onto another form of respiratory support called CPAP which was one step in the right direction and a week later she took another big step, after spending 11 weeks in intensive care (the red area) learning to use her lungs, getting used to being tube fed and fighting numerous infections Edith was moved to high dependency (the blue area).

Edith continued to have good days and bad needing more blood transfusions, and various tests, it was also found out when a chest x-ray was taken that she had suffered 4 fractured ribs. These fractures occurred from gentle handling, some of the medicines that Edith needed was beginning to effect her bones. She still struggled respiratory wise and she had to be weaned carefully from CPAP to humicare and this took weeks. During such time Edith also had to learn how to feed orally and this is not easy for respiratory babies as they have to learn to suck swallow and breathe without spluttering, aspirating and getting tired out. She spent another 10 weeks in high dependency before she was promoted to the green area where she spent 5 days.

Anyway she did it, she got through it all and after numerous infections, a heart operation, a hernia operation, being diagnosed with pulmonary hypertension, chronic lung disease and finding out that both of her kidneys are in fact both on her right side (her left kidney is attached to the bottom of her right kidney) lots of blood transfusions, learning to breathe for herself and grow, Edith made it home!

On 17th January 2014 after 22 weeks (154 days) Edith was able to come home weighing 7lb 5oz.

Without the help of Tiny Lives Edith most probably wouldn't of made it. Tiny Lives fund some of the training for the Drs and nurses on the ward to give them the skills they need to do what they do. They fund developmental aids and supports for the babies like the support that Edith needed to keep her on her side when her lung collapsed at 4 days old. Tiny Lives funds a social worker to help support families who may not have that extra support that is needed when you have a baby in SCBU, not only that but she also assisted my parents to complete any forms that they needed to for the financial support that they were entitled to. They also have parking permits and give parents passes for public transport. These are just some of the ways that Tiny Lives helped my family and we want to give a little something back with the help of your kind donations.

For more information on TINY LIVES please visit www.tinylives.org.uk

Edith is now 2 years old, she still has chronic lung disease and she is still oxygen dependant during the night but she is a happy go lucky toddler with a big personality who is hitting all of her developmental milestones thanks to Tiny Lives and the Drs and nurses of ward 35, we are forever grateful.

Therefore I am walking the 3 Peaks in Yorkshire on the 18th of June to raise money for this amazing charity!

Thanks for taking the time to visit my JustGiving page.

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