Shortly after, I was moved to another ward for women with babies in SCBU. I found this much easier but still struggled with seeing women coming to and from delivery with their new babies - seemingly not a care in the world - whilst I sat feeling rather sorry for myself. That day I wrote this in my journal: 'today has been a really hard day. I think the tiredness and hormones are setting in. I'm finding it really hard leaving Sam in SCBU and desperately want to be with him all the time. I am so jealous of the mothers who give birth to their babies and no one takes them away from them. I find it so unfair that I can't touch him and hold him as much as I want to. The next few weeks seem endless in front of me and I just want him at home with me so much. I don't think it helps being in hospital myself. I saw some twins today, same gestation as Sam but both significantly bigger. What went so wrong?'. I continued to struggle with being in hospital and asked to go home as soon as possible. I was discharged after the obligatory 72 hours!
Leaving Samuel at the hospital was the hardest thing I had ever had to do. I was desperate to go home; to be in my own house and in my own bed. Our plan was to rest at home as much as possible whilst still travelling the 10 minutes to the hospital to spend as much of the day with Sam as possible - and for me to be able to use the top of the range breast pumps in SCBU rather than my manual one at home! As we left the hospital I still couldn't walk properly due to the c-section and had to be helped by John. We walked out of the main entrance and in to the car park and I was suddenly hit by the enormity of what we were doing. We shouldn't be leaving our baby in the hospital - we should be bringing him home with balloons, cards, smiles and new outfits like the other parents we saw. I broke down in the middle of the car park with exhausted sobs and cried all the way home. I struggled to remind myself that Sam was ok. We called the hospital as soon as we'd arrived home to check how Sam was and then went back in that evening to see him again.
The next few days things seemed to get a bit easier. Sam had a brain scan at a few days old which confirmed that his brain was clear of any bleeds. This was amazing news and something a lot of people had been praying about. He was able to tolerate tiny amounts of milk and had even done a small poo. This is a very exciting thing with a special care baby - it meant his digestive system had started to work! He was placed on a 'cautious feeding' regime where he was given tiny amounts of milk every couple of hours. The idea is that the amount of milk, and the gap between feeds, would be very gradually increased as Sam was able to tolerate more milk. He was being fed through a naso gastric tube and the nurses showed us how to put his milk down this. By day 5 he was able to tolerate 2ml milk every 2 hours! This sounds like a tiny amount but it was very exciting at the time. We were also able to do his 'cares' ourselves which involved gently cleaning him with cotton wool and sterile water and changing his nappies, both through the windows in his incubator. This juggling act took some getting used to but made us feel more like his parents than people who observed him through a box. We decided that we would try to be at hospital for his cares whenever we could.
Throughout his stay in special care, Sam miraculously managed to stay infection and jaundice free but had a lot of ongoing problems with his feeding. When he was 8 days old we were told that, as he was getting towards full feeds, the next step would be to take him off his drip and remove his long line so that he would get all the nutrition he needed from milk. However, that day when we went in to visit him and he seemed quite distressed. He still didn't cry as such at that stage but he looked uncomfortable and his heart rate kept dipping which I found very upsetting. Just before we left for the night he was sick. I remember getting really upset about what had happened and didn't want to go home,worrying that he would be sick again and choke during the night. A nurse explained to me that he possibly had a bit of reflux which was normal, especially in premature babies. I couldn't stop thinking about it and didn't sleep that night. When we arrived the following morning everyone was happy with him. He hadn't been sick again but they had kept his drip and long line in until the following day, just incase.
The days in special care are very long and monotonous. Most of the time is spent either staring through the incubator or expressing milk. Breast feeding was something that wasn't an option for Sam as he was so small and weak and his sucking reflex was very underdeveloped but I carried on expressing as I knew how important breast milk was for him. The expressing room in special care is a surreal place! It is a small room split in to two with a fridge, freezer and sink in one half and a number of chairs and breast pumps in the other half. These breast pumps bear no resemblance to the small, portable pumps that people buy when they have a baby. They are huge, hospital grade pumps that plug into the mains electricity and work a lot harder than the manual pumps people own. They can even pump milk from both breasts at the same time which was a source of many jokes at the time. Strangely enough, the expressing room became somewhere that I looked forward to going. There were always people in there to chat to and as everyone was in the same position it became a huge comfort to exchange stories, anxieties and experiences with people who had endured the same things as I had. It was there that I met one of my closet friends, Siobhan. We hit it off straight away and went through the stresses of special care together. Sam and her little girl have been close since and there is a level of understanding and empathy that I don't feel is possible unless you have experienced special care. The staff in the unit that we were in are amazing. They are both highly skilled and friendly and I feel that it is the friendliness and warmth that they show both babies and parents that makes the unit a safe place for parents to develop and build friendships with each other. I can't imagine how anyone could be in special care for any length of time without support from other parents.
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