Day 10 - Thursday 29th June 2017
I didn't have to go out anywhere this morning so I decided to spend all day with Theo and Lisa. I gave him his little red teddy to cuddle which he really likes..... it had made its way down to the bottom of his incubator. The doctors asked the nurse to turn his ventilator down again today, the are trying to wean him off it a little bit. I'm finding myself getting quite anxious about it because he didn't get the steroids before he was born and I'm worried that his lungs won't cope with all the work he is having to do for himself.....! He's still doing really well with his milk. He's gone up to 4ml every hour now and is still digesting it really well. Lisa and I were working as a team today to feed him and clean him.... two man job changing his nappy..... Lisa and I had to leave the hospital again in the afternoon to go to Jack's prizegiving at his school. Lisa doesn't like leaving Theo, even for a short while, especially when we don't really know the nurse..... which I completly understand, I'm finding it hard enought to leave him myself.... and it's not normal for a parent to leave their new born.... especially when they are so poorly! But yet it was expected in NICU??
We would be almost 40 minutes away, and away for a few hours at least, so this was going to be really difficult for her, but she has never missed any of Jack's school things before and she really wanted to be there for him... especially as his teacher had told me last week to make sure we were there??.... I wonder if he's going to be awarded a prize 😁 We arrived just before it started and slipped in to our reserved seats that our freinds (who looked after Jack when we first came to hospital) had saved for us.... right near the front so that we didn't have to see anybody. When I picked the leaflet up, I realised where Jack had got the Robbie Williams song from..... it was in the programme. He sang the song in the choir half way through the ceremony and Lisa and I burst out crying, albeit I tried my hardest to hold it in so I didn't embarrass him in front of his mates..... it was really emotional..... Right at the end, Jack was awarded a Scholarship for Mathematics and Lisa and I both started crying again..... talk about emotions.... we were a pair of blubbering wrecks! There were a lot of people there who didn't know what was going on in our world and probably thought we were weirdos.... little do they know the battle we are facing to hold it together! At the end of the night we made our way quickly to the front of the hall. I had spoken to one of the teachers when we arrived and asked if she could keep Jack to one side so we could say goodbye before we made a quick exit.... We said well done for winning his maths scholarship and then said goodbye as he was stopping at another one of his freinds houses for the night tonight..... we feel guilty that he is not with us but our freinds are offering to have him and he is having a much better time with his freinds..... I then extracted Lisa from the school like it was a military operation before we were crowded by our concerned friends..... they had all started to make their way towards us but neither of us are ready to talk about it yet. We feel really bad for leaving and not talking to anybody, but it would have been to much for us both. When we got back to the hospital, Theo was de-saturating quite often so the doctor asked the nurse to turn his ventilator back up..... poor baby, we were really stressed then because we hadn't been there for him and didn't know how he'd been for the last few hours! The nurse had really struggled to get and blood gas results off him as well today between 3pm and 11pm because it kept clotting before the blood gas machine could read it. Thankfully, she managed to get a reading just before midnight and it was ok.... I feel really sorry for him tonight as he has had a tough time with his ventilator turned down, and we weren't there for him 😢😢😢 I'm sorry little man ❤❤ 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