Lisa's reflective account of Day 13....

I got up as usual to express and phone the unit, but went back to sleep afterwards as it was Phil’s turn to go across and see Theo. I got a phone call from Phil not long after he’d gone over, he was worried about what the night Dr had said about Theo’s heart scan. I then felt guilty for staying in bed, I should have gone over to the unit! I raced over there as quickly as I could. On the ward round, the Doctor was really nice, he drew us a diagram and explained everything about the scan findings. Theo had a large PDA as expected but there was a possibility there could be another problem with an arch? They couldn’t say for sure though as it was difficult to see. We were grateful of how well the Dr explained everything, especially as the night Dr had worried Phil so much. We discussed treatment and it was recommended he start a course of ibuprofen to try and close the duct. As with the majority of the treatment given to the babies it was not without it’s risks. We had a really nice nurse on that morning, she had looked after Theo the day before too. We spent so much time on the unit that we were really getting used to how everything worked. The nurses had been amazing so far teaching us how best to care for Theo. The needs of an extremely premature baby are so very different from those of a term baby, we were learning so much everyday. The morning nurse was only on a short day and so handed over to the nurse that would be looking after Theo that afternoon. Soon after handover he needed suction which they did regularly. He was unable to clear his own secretions and because of his breathing tube, the secretions would build up to the point where they needed clearing manually by suction. The nurses did that for him. We had seen it done many times and the nurses had explained what they were doing and why on lots of occasions before. They always worked from the left hand side of the incubator because that’s the side the emergency equipment was on should they need it. The afternoon nurse went to suction him from the right hand side and the morning nurse who was a Sister questioned what she was doing. She went back to the other side but turned his head quite vigorously to the point where we all jumped up to stop her. Babies as premature as Theo don’t like being handled and we had been taught to handle him really gently, turning him in small stages and taking care of his head so as not to dislodge his tube. Our poor little baby, I was so annoyed and upset by the way that she’d handled him. I am a realist, there are around 250 nurses on the unit, in any job, in all walks of life there will be really good staff delivering best practice, average staff and staff that are not as good. Why would the unit be any different? Saying that, we had been there 2 weeks and the nurses so far had all been really good! Theo was our tiny little miracle baby and for us only best practice was good enough. I was so upset, I didn’t want her to touch him again. The room lead spoke to us and agreed to reallocate the nurses for the afternoon. She explained that the nurse had been off and would receive further training before caring for ventilated babies. I was pleased with the way it was handled. The new afternoon nurse was really lovely. It was my brother in laws birthday that day and we were supposed to go out for a meal to celebrate. Because of all of the stress, I needed to make sure Theo was ok and couldn’t bear to leave him so Phil went without me. He met Jack there as he had stayed at my sisters the night before. I totally forgot that Jack had been invited to a party at Manley Mere. He was really disappointed that we forgotten about it. He told us he didn’t mind but we knew he did really. I felt so guilty and sad for him. Usually I had such a good memory but I found it really difficult to fit information into my brain anymore. It was too full of emotion, stress, worry, guilt etc. Phil took Jack to the cinema after their meal. It was a small consolation for him missing a fun day with his friends. Sorry Jack 😢

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