Lisa's reflective account of Day 21....

Our beautiful boy was 3 weeks old. I got up early, phoned the unit as usual, expressed and went across to see Theo before morning handover. It was a nightmare to get onto the unit sometimes because there was no one on reception until later and the buzzer wasn’t always answered overnight, so we had to phone the rooms. Signal was rubbish in the hospital so my phone didn’t always work. I would just have to hope that someone would walk past and see me. Phil came across for the ward round, the Doctors changed over on a Monday. They took it in turns to be the daytime consultant in charge of the room, usually for a week at a time. The Drs had been really good so far, it usually took them a couple of ward rounds to get to know us, how involved we were and how well we knew Theo. They all introduced themselves by their first names which made them seem more human and approachable. The consultant who was on that week was really nice. My Mum and Leanne brought Jack back from his sleepover at Leannes. They stayed with Theo and I whilst Phil took Jack to Ronald McDonald as he had some work to do. My Mum and Sister took turns to sit with us as you can only have two people at the cot side, and one of them has to be a parent. Theo needed repositioning regularly to relieve pressure. The nurse who had him that day hadn’t looked after him before. The cot space that Theo had was very bad for condensation accumulating in his breathing tube and running down into his lungs. We needed to monitor it closely as it caused him problems with his heart rate and breathing. The nurses previously had said that before he is moved the water should be shaken out of his tube to avoid it going into his lungs and making him unwell. The nurse who was on that day must not have realised as he moved Theo without disconnecting his tube. Theo got a rush of water into his lungs, his oxygen saturations and heart rate dropped almost instantly as a result. He went grey and needed neo puffing for longer than he had before. I had seen him being neo puffed before but I had never seen him look so grey and lifeless. I felt so helpless, I wanted to protect my baby but there was nothing I could do for him. I was so upset. I felt that situation was completely avoidable. My sister was there too and she said that now she completely understood why I didn’t leave him. I phoned Phil to tell him, he came over to sit with Theo because I needed to leave. I felt like the walls were closing in on me, I needed to go and regroup and compose myself. For the nurses in the intensive care rooms especially, neo puffing a baby was a regular occurrence and an everyday task for them. For a parent to see their baby’s colour drain from them, seeing them grey and completely lifeless was so scary and horrible. That was the worst episode he’d ever had. I went back to the unit later that evening and spoke with the nurse. He said he was just doing what he had always done and that it had never happened to him before. He apologised for upsetting me and said he understood how scary it must’ve been seeing Theo like that. I didn’t have any bad feelings towards him. I just felt so out of control at the time that I reacted the way I did. Theo was our precious baby and I just wanted to protect him and keep him safe. Theo had been desaturating and dropping his heart rate more frequently that afternoon so the Drs requested a chest X-ray and bloods to check his infection markers and full blood count for anaemia. His chest X-ray showed that his breathing tube needed to be pushed in a little bit further which they did. Hopefully that would make him feel a bit better. His fbc kept clotting but his hb on his gas was very low and dropping so they decided to give him a transfusion anyway because of his symptoms. I hated not being able to help him. He was 3 weeks old and I couldn’t pick him up and tell him everything would be ok. He couldn’t even cry to tell us if he wasn’t happy. He was so tiny and vulnerable. I just wanted to keep him safe and tell him everything would be ok. I really hoped it would be, I loved him so much 💕

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