On Friday a SLT (Speech Language Therapist) visited Samuel and, in consultation with the Dietitician and lung doctor, wanted to watch Samuel drinking milk - sounds simple enough, except at 12 weeks he never had yet! They wanted to start him on 5mls of expressed breast milk. I asked her if they planned to give it to him directly into his gastro-tube, put it in via a nasal-gastric tube through his nose or syringe it into his mouth. She looked at me as if I was a bit strange and said, 'um, a baby's bottle should be fine'! I stared at her for a bit and then the penny dropped, 'Oh... you mean feed him...with a bottle?!'. It was so weird after 3 months of very little normal baby stuff, sitting holding Samuel and putting a bottle in his mouth - and he loved it, latched on straight away and drank it perfectly - well it was only 5 mls, but still - I was so proud of the wee guy! She was confident that it had not gone down into his lungs (one of the concerns surrounding his episode when he stopped breathing) and he was visibly pleased to have something in his mouth that wasn't inflicting pain and tasted good... and I'm sure he would have drunk a whole bottle if he'd had his way - the look of delight in his eyes was precious. But for now we are feeding him 6mls of milk every 4 hours and monitoring how much fluid comes out his gastro-bag (direct from stomach) and how much comes out his colostomy bag (his bowel). The best result would be if more comes out his colostomy as it would mean he has some muscles pushing it the right way. If Sam can cope with real food, albeit a small amount, it would help protect his liver a little from damage, which is caused from constant TPN use.
Last night they stopped his oxygen support for about 10 hours, but he wasn't coping as well as he needed again this morning, so he's back on low-flow again.... so we are learning to be patient (well I'm not, but trying to!) and realise it is all a very slow process. Lungs continue to grow and develop as opposed to deterioriate, so they aren't overly worried about his O2 requirements.
I slept at hospital last night, and Sam had a pretty settled night and it's Francis' turn tonight. The ward were given a bunch of complimentary tickets to ballet at the Aotea Centre today. Having never been to a ballet before, I took the opportunity and took the girls. The orchestra was amazing and the ballet was overall great - read between the lines what you will.... But about 10 mins into it a wee voice pipes up beside me (just as the musics lulls).... '('sigh)... when is it going to finish?' Thankfully it picked up after that and the girls were amazed by the stage sets, that there were lots of male dancers, costumes, disappearing fairies etc etc... but weren't too thrilled when the 2 main characters died at the end. But it was a superb afternoon and a really special treat for us and Francis had some boy time and lots of smiles with his son.
After the ballet we had a family tv dinner, the 4 of us cuddled up on the single bed watching 'Happy Feet' on tv and Samuel sleeping beside us in his cot.... simple but wonderful to be together.
Sleep well. X