Help Sick baby Isabella

Isabella has had one of the hardest start ups in life.She was born with no connection between the esophagos and stomach and had a 9 hour operation on day one but they couldn't do the entire operation that day. After she got numerous infections as well as meningitis the doctors delayed her next operation until she was 11 weeks old. This operation had major complications and she ended up with 3 chest drain and a collapsed lung which caused 3 cardiac and 1 respiratory arrest (there's nothing worse then watching your baby being resuscitated). Since then Isabella has had a further 5 operations plus a few 3 hour procedures. We have found out yesterday that water has gone into her lung again. So she is 8 months now and has been out of hospital once for a few weeks. She needs full care because she can't drink/eat orally due to her condition. She gets fed through a gastrostomy continuous 20 hours a day. She is a resident at Sheffield children hospital but it's getting harder and harder to balance work life with my daughter since bills still need to be paid and i can't afford anymore time off work :(. We have been told that these issues are long term and that she will always have issues regarding this.