Phoebes Story

In February 2018 at 32wks i gave birth to our twins Joe & Phoebe, for the first 2 weeks they were doing great in the neonatal unit and then Phoebe developed Necrotising Enterocolitis, basically her bowel was infected and dying. She was blue lighted up to the RVI and onto the special care baby unit, she was monitored and xrayed and thats when they realised her bowel had perferrated and its contents were leaking into her body, she needed emergency surgery or she would die. She had the surgery and had most of her bowel removed, she was a tiny 3lb and ventillated and left with only 36cm of bowel, resulting in her now having Short Bowel Syndrome and a feeding peg in her tummy for medication, fluids and food.

While on the unit we came into contact with Tiny Lives, they provided us with a funded room on the unit so we could be close to her (her brother was still 20 miles away in a different hospital), they gave us a paid for parking pass so we didnt have to worry about the costs of hospital parking and they gave us meals so we didnt have to leave her when she needed us most, Phoebe was on the unit for just under 6 weeks, she had pulled through so then she was moved to the peadiatric intensive care unit and thats when her heart heart condition became the main problem, she had been diagnosed at our 20wk scan with Pulmonary Atresia with Vsds, she was on medication to keep her heart going but a side effect was it could stop her heart, which it did and she had a cardiac arrest resulting in her being ventillated again and transferred to the Childrens Heart Unit at the Freeman hospital.

And thats where we came into contact with CHUF and The Sick Childrens Trust who found us a funded room on site so we didnt have to look for and fund accommodation. Phoebe eventually had her open heart surgery to close the vsds and put a stent in her pulmonary artery and patch up the end that was missing. 
Overall Phoebe spent 193 days in hospital before she was finally allowed home, she had 2 life saving surgeries, open heart surgery, 2 cardiac arrests, a bloodclot on the brain resulting in a stroke and seizures, she developed septicemia and had so many blood transfusions i lost count, but FINALLY at just over 6 months old in august 2018 she came home with us for good.

We've had few hospital admissions since then and we go back to the RVI for check ups every 3 months to see her gastroenterologist, her dietition and her surgeon (never on the same day mind lol) and back to the freeman every 4 months to see her cardiologist for ecg's and an echo, she has a leak in her valve that they keep an eye on and she'l need more surgeries in the future and as she grows, but for now she's good.

So why have i set up this fund page, well so far we have raised just over £220 for Chuf when we did the chuf toddle, just over £3000 for tiny lives by having fairs, raffles, tombolas, cake stalls and an afternoon tea. Often people will message who cant make it but still want to donate, so instead of missing out il use some money from here to buytickets, then any prizes won il put all your names into a hat and pick someone out then il cover the cost of getting the prize to you. Some money will be sent direct to the charities, other money will be used for the cost of hiring the hall or venue.

Im asking that all you lovely people weather you donate or not please share this so it goes far and wide, i cant explain how much we appreciated and still appreciate all the help we recieved while we were going through the worst time of our lives and with your help we want to give something back