Lisa's reflective account of Day 35....

I woke up early that morning to express as usual and phone the ward. I always phoned before I went over so that I had an idea of what to expect when I got there. The nurse said he’d been great overnight and that they were considering putting him on bipap. Phil and I got ready and went over to the unit. Theo didn’t look very well when we got there. His temp, heart rate and resp rate were all really high. He looked so unsettled. The nurse said she’d been on her break and he had spiked a temperature whilst she had been gone. The incubator was temperature controlled and they altered the temperature depending on Theo’s temp, sometimes if his incubator was too warm he would get too warm. He had been on his tummy too which also made him warmer. It was difficult to know whether the reason for his spiking temp was environmental or infection related so they took bloods to check for infection and cooled him down by reducing the temp of his incubator and turned him into his back. They started antibiotics again just incase it was due to infection and said that they wouldn’t transfer him to bipap until they had the blood results and were sure it wasn’t an infection. It was important that he was optimised before they took his breathing tube out so that he had the best chance of staying off the ventilator. He would struggle to cope if he had a developing infection so it was best to wait and see. The tube was causing him discomfort and he was doing well with his gases, the sooner it was out the better but I wanted him to have the best chance of it being successful. That day he needed his incubator changing again so the nurse said we could hold him whilst they changed it over. I was apprehensive because he hadn’t been well that morning. He was safe in his incubator and I didn’t want him to be stressed by him being moved out because he didn’t like being handled anyway. The nurses said that if we didn’t hold him then they would have to change his incubator anyway so we might as well as we’ve only held him once before and he was 5 weeks old! They checked with the Drs and they too said he could come out. I held him on my chest, it was amazing but scary. He was so tiny and vulnerable, I just wanted him to be ok. Our friend came to visit whilst he was out and she had a picture with us. She worked at the hospital and had been amazing to us since day one. So supportive! After a while the ventilator flat lined, Theo wasn’t getting any breaths delivered to him, his heart rate and saturation’s dropped. The nurses manually ventilated him with the neopuff. Once he was back up, they reconnected him to the ventilator. It happened again, and again. They got the technicians to check his ventilator machine, all the time neopuffing Theo on my chest. There were about five people behind the screens and a doctor peeping over the top. These were not quality cuddles!! I just wanted him to go back into his incubator where I knew he was safe. I was so stressed and felt so sorry for him going trough it all. The technicians ran checks on his ventilator which came back fine so it was definitely a problem with his tube, most likely positionally stopping his breaths from being delivered. Phil was desperate for a cuddle, so he had one before he went back into his incubator. His oxygen had been turned right up and every time he was moved it caused him discomfort. It felt like we would never be able to hold him properly. I looked at the other parents around the room who were able to have lovely cuddles with their babies. For me it felt like an utterly traumatising experience! Thankfully he was soon back in his incubator where he was safe and I breathed a sigh of relief. Phil and I spent the rest of the day by his cot side looking after him. Jack was having that much fun on holiday he didn’t have time to message us which was good! I was grateful that my friend was messaging pics of him so I wasn’t worried and knew he was having great fun. Theo was great for the rest of the day. His gases improved and he was breathing well over the ventilator. We had to wait until his bloods came back the next day to see his infection status. His temp had been up and down all day. Happy 5 week Birthday Theo, such a brave little tiny human. An amazing little fighter!

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