Lisa's reflective account of Day 4....
Phil went over to see Theo early that morning and I stayed at Ronald McDonald with Jack to help him get ready for school. We all agreed that today would be a good day for Jack to go back to school as he had an awards ceremony in the morning and sports day in the afternoon, so didn’t really have to concentrate on any work. We knew it would be really good for him to see his friends and go back to the normality of being an 11 year old away from the intensity of the NICU.
Phil went to both of Jack’s school events and spoke to his headteacher to explain everything that had been happening so that if Jack got upset or needed to talk then they would be there for him and aware of his circumstances. He only had a couple of weeks left in Year 6 before breaking up for Summer so it was important that went and enjoyed the time with his friends.
I stayed with Theo for the day, ward round was at 9am every morning. When the Drs came in to the intensive care room, parents had to leave whilst they went round the other babies and discussed the plan for them. This was to protect confidentiality. Parents were allowed in when their own babies were being discussed but then had to leave again until ward round had ended, usually around 11.30am. I was always there for Theo to make sure I knew exactly what was happening with him.
His blood gasses had been off overnight, these were checked very regularly, they changed the ventilator settings depending on the results. He was needing more oxygen now too because the good effect of the surfactant given at birth for his lungs was wearing off. His blood sugars were all over the place at the moment, higher than they should be so he needed to go on a sliding scale insulin infusion to manage it. I was reassured by the Drs that all of this was normal for such a premature baby. His organs were so immature they couldn’t function properly just yet. They said the fact that he was supporting his own blood pressure was positive, he didn’t need inotropes to help him which was really good. Although his Blood Pressure was on the low side.
Every few hours were so different, we were regularly told that such early babies often take one step forward and two steps back throughout their journey.
Phil had been rushing around so much over the last few days, I think he was really starting to feel overwhelmed and exhausted. When you were with Theo you knew that he was ok because you could see for yourself but because Phil had spent large parts of the day away from him over the last few days he was really starting to drive himself crazy with worry. When he phoned I always made sure I told him everything but was very conscious to make sure I said it in a positive way.
I couldn’t even contemplate going out into the wide world, I just couldn’t leave Theo but Phil was having to. He went to Jack’s school so bravely to support him when he was feeling so emotional. I was so thankful because it was so important to Jack. We had never missed a sports day.
The Doctors I work with came to visit today, they were the first people I had seen from my old life (other than family), the life I left behind one week ago. How little did I know that when I left work last Friday, one week later I would be seeing them again in the middle of this whirlwind. When you are consumed by everything that is going on in the hospital you forget that there is a world outside and seeing people made it all the more real. I was so emotional when they came, we met at Ronald McDonald House and then went to see Theo. I was very grateful of them coming to see us.
Phil and Jack came back later that evening, Jack was really proud for getting an award that morning and winning a race in the afternoon. You could see in Phil’s face that he was struggling, I told him over the weekend that he should spend time with Theo and go to the top of a big hill to scream and shout and let all of the emotions out that he was bottling up! He really needed to....
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: www.gofundme.com/thoesnicujourney