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Lisa's reflective account of Day 12....

I should have been 27 weeks pregnant that day. I was upset that I had missed out on being pregnant. In the same breath I was so grateful that our baby was here and ok. It could so easily have been a very different story. I was glad that I went over to NICU early that morning because Theo needed his Ventilation tube changing. When adults are ventilated they are usually sedated but the babies are wide awake and can feel everything. It must have been so uncomfortable for him. I waited outside the room whilst they changed his tube. He had the next size up tube put in which they said was a really big one for such a small baby. I felt sick whilst they were doing it. I would have done anything to change places with him, I felt so guilty for what he was going through. When they took his tube out it was partially blocked with thick secretions so hopefully he’d feel better now and be able to breath more easily. Phil came over with Jack for the ward round. He was much more settled by the time they came over which was good. He’d had an X-ray and they adjusted the position of his tube. Later that day Phil's sister, neice and great nephew visited. We spent time in Ronald McDonald garden. Jack played with our nephew, it was a lovely sunny day. I hadn’t spent much time outside at all the last 2 weeks. Phil took his sister and neice over to see Theo. I was happy that they were spending time with him but that physical pull in my heart was there the whole time I was away from Theo. Jack and I went for some tea in the hospital cafe that afternoon and Leanne came to see us, she came most days because Mum was still in Australia. Jack was staying at her house that night. I was really grateful that Jack would be occupied and having fun. Theo was still de-saturating a lot. They took regular bloods and blood gases and could see that his Hb was low so were going to give him a blood transfusion that night. They had to put another cannula in. Poor baby all he’d know of his life so far was needles and tubes. His eyes were still fused closed. I can’t imagine what it must have been like for him. He needed to have an Echo on his heart that night too. When babies are born, a duct in their heart usually closes 1-2 days after birth but sometimes stays open in premature babies. It can affect blood flow around the heart and lungs. His Blood pressure average was low because there was such a wide gap between the systolic and diastolic which can indicate that the duct is still open. It had been a rough couple of days for Theo. I felt so sorry for him. He was still so so tiny. I found it very difficult to think about or concentrate on anything else other than Theo when he was having problems. I didn’t express as much when he wasn’t as well either because I felt more stressed and didn’t want to be away from him. I really hoped now he had a new tube and was going to get more blood that he would start picking up. He was doing really well with his hourly feeds. Nearly fully fed but not quite. The strength and determination that he showed to get through each day, got me through each day. He was my tiny little hero 💕

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