We were told on Sunday that she would be getting her sleep study on Wednesday, and Alan and I were booked into the room for Tuesday night and Wednesday night so that I could start doing every feed, through the night as well as through the day. When she has passed a sleep study and can manage all her feeds and still put on weight then she is allowed to come home!
Special care is very very different from ICU and HDU! It's really just been a case of sitting watching Sophie waiting for her to wake up for her feed! She started doing demand feeding on Tuesday but we're not to let her go longer than 4 hours. She had two successful feeds on Tuesday afternoon and she had to be woken up for both of them! Let's hope she is a good sleeper when we get her home!
It is so lovely being able to pick Sophie up whenever we want, and do absolutely everything for her. She still had her feeding tube at the beginning of the week, but it was getting in the way when she was feeding, and they decided she didn't really need it any more so it was taken out.
Her sleep study started out well on Wednesday morning with her numbers up above 94, but during her late morning feed she gave me a scare when she had a huge dip mid-feed and went grey and floppy and started to go blue round the mouth and eyes. I have never been so terrified in my whole life. The nurse rushed in and grabbed her from me, and started blowing on her and patting her on the back. I felt so helpless and was so wishing Alan was there but he was at work. The nurses said it was just because there is so much to think about when she is learning to feed and she just forgot to breathe. I knew this would mean she'd failed her sleep study but we did think all along that it was very soon to be doing the sleep study when she'd only come off CPAP last week and started demand feeding the day before after being tube fed for every feed up till then.
The feed after that was perfect and there were no dips at all but her heartrate continued to go up and down for the rest of the day. I was still really scared during the next few feeds, and Alan got up with me in the night to go along to do the feeds. The nurse looking after her overnight was lovely, and really got me sorted out with the feeding and helped me to relax with it. Sophie was up once during the night and once around 6.
The sleep study was arranged to be repeated on Friday night, and the nurses booked us into the room for another few nights so I could continue to do all the feeds. Alan had to come back home to collect some more clothes etc for us, as we'd only gone with enough for two nights!
Friday came and Sophie's sleep study was repeated. It had to be re-started at midnight because one of the night staff didn't realise the computer was being used for that, and she used it for something else. It was so frustrating! We were told on Saturday morning that Sophie was not yet ready to be going home and that she might have to go home on oxygen. It was one of the community nurses who had read the results of the sleep study and she seemed convinced that Sophie would be going home on oxygen. She was even going to order the cannister so that it didn't delay things as it would take a few days to arrive. She also wanted to arrange for me to go to visit another mum and baby who had just gone home on oxygen so I could see what the set-up was like at home, and she told us that Sophie would be at high risk of cot death. As soon as she said that it all just got too much for me and I rushed out in tears.
I phoned Dona, who had little Archie at 27 weeks last year, and she told me not to rush into anything. She said to give Sophie another week in hospital and see what happened, and that often something just suddenly clicks and oxygen may not be needed. Sophie had needed a feed while all this was going on, and Alan had to give her some expressed milk by bottle - her first ever bottle feed.
I eventually went back along to Special Care and had a cuddle with Sophie then Alan and I went for a cup of tea and talked about our options. We decided we'd rather even have her in hospital another two weeks than bring her home on oxygen for what could end up being a few months. Her saturation levels could improve a lot in a week, and the nurse did said she'd even seen a difference in Sophie that day. I even heard Sophie do her first proper loud cry that afternoon!
I managed to find the mouse outfit again that she'd been wearining in HDU (my very favourite outfit!) and I dressed her in that so that cheered me up a little bit! I was surprised at how much better it fitted her than the last time she had worn it! She was a bit cold so we put a wee pink hat on her too and she looked so cute!
It's been a stressful week - the most stressful since she was born - but maybe next week there will be good news about her coming home! We are really starting to feel the strain now. When she was first born, we knew there would be weeks and weeks stretching ahead - probably at least 13 if we were looking at getting her home around her due date - but now she is a couple of weeks from her due date and it's so hard knowing we are so close to getting her home but still so far.
Here are a few more pictures of Sophie's first week in Special Care.