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Lisa's reflective account of Day 27....

My mobile phone rang at about 3am that morning, we hadn’t left the unit until 1am. I jumped up as I knew it would be them ringing. A million things rushed through my head in the split second before I answered the phone. It was Theo’s nurse telling me that the Drs were starting an inotrope infusion. They were obviously concerned about his low blood pressure. Phil and I always asked them to phone with even the slightest changes whilst we weren’t there because we wanted to know everything that was happening with him. I thanked the nurse for ringing and said that I’d be over in a while. I remembered from when Theo was first born that the Doctors said it was really good that he didn’t need any circulatory support with inotropes, but now he did. I was really worried for him. I could hardly sleep so I expressed, had a shower and went back over to the unit. Theo looked terrible when I got there. I was really quite taken aback with how bad he looked. He didn’t look at all comfortable. I phoned Phil really upset and he came over to the unit. Theo’s bed had been changed even though we asked for it not to be. The nurse said she hadn’t been happy with him all night. It was evident that Theo was just completely exhausted. When he was handled he’d had big drops in his heart rate and oxygen saturations so he needed to be moved again which he didn’t like and it had become a viscous cycle. The day Consultant came onto the ward early. I was in despair by this point. I felt like Theo was becoming more poorly and really wanted someone to do something. His tube was causing him problems and I was almost certain that his heart duct had reopened. The consultant was so lovely, she really understood our concerns. Whilst she was with us the consultant that had been overnight phoned her and they both agreed that Theo should have his breathing tube changed. She also requested an echo to check his heart duct. I was so relieved I burst out crying. The nursing staff had changed over by this time. They changed his tube shortly after, they managed to get a slightly larger one in. A size 3.5 which was big for such a small baby. He was so much more settled with his new tube and his blood gases were better too. His echo showed that his duct had reopened again causing extra pressure to his lungs and too much blood in his left atrium. The Doctors said that it was likely the infection had caused it to reopen. He couldn’t have anymore treatment for it so we would have to hope that it closed on it’s own with time. Sometimes babies need surgery to close them but it can have risks and we didn’t want that. Phil went to pick Jack up from my Mums and took him up to see our dogs at Bleakholt. They brought me a Sunday dinner back which was so delicious. I spent the afternoon with Theo. He was a totally different baby than he was this morning. We just left him to rest all day and only changed his nappy and repositioned him minimally. I felt much better too. It was so stressful when Theo was in discomfort but there was absolutely nothing we could do. We felt so helpless. He was still on all of his antibiotics, morphine and inotropes and not having any milk feeds but we really hoped he would start to turn a corner. I would’ve given anything to make him all better right there and then. He was such a brave little baby. I was so proud of his strength and determination. He was fighting so hard and you could be sure that I would fight for him too, with everything that I had. Thanks for reading, please share this blog with everyone you know to extend it's reach.... Subscribe to our page to receive a notification of the next blog.... You can donate to our two amazing charities at:

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