So much about Byrn’s pregnancy was about what was wrong with him. So many scans, detailed viewings of his heart and how that worked (slightly differently to normal), the signals that he had Trisomy 18, his omphalocele, his smallness, his lack of movement – the enormous amount of fluid I carried.
I made an effort to sing to him, to talk to him, to spend time with hands on my belly sending him love. And wondering all the time – how long we would spend in hospital and when I would be able to hold him.
Most of the time in hospital he spent a lot of time asleep and I did truly wonder whether he would always be asleep and how it would be caring for a baby who may not respond to us very much.
The main meeting we had to meet all the people who would be involved in his care (many of whom we never saw again) was very intimidating. And I will always remember one nurse telling me that he would never be able to co-sleep – a pretty devastating thing for me to hear as that was something I was really looking forward to. To snuggling him close to me during the night in an effort to make up for those 21 lonely nights he had in hospital.
Anyway , we got home late in the evening and first thing I did was strip us both off and snuggle up skin to skin. It was bliss to feel him so close after all this time and with only his NG tube – which we had been shown how to coil up and tuck in his clothes to avoid pulling it out).
To say we were unprepared for non-co-sleeping is an understatement. Poor Bryn had a wicker laundry basket made up with a little bed in that he was expected to stay the night in. As Midge laid him in it Bryn uttered a small grunt and my immediate reaction was ‘oh he doesn’t like it he HAS to sleep with me’ so I propped myself up in bed and spent a wonderful night with him cradled on my chest.
Again there was so much talk of what Bryn might not be able to do, he won’t put on much wait, he will be developmentally delayed, he won’t be able to do this, that or the other, the list was endless.
Gradually Bryn became more awake and aware. Because he spent a lot of time skin t skin with me I got wee’d and poo’d on a lot and s soon was able to learn the signals for when he was about to go – we would hold him over a small ice cream tub and allow him t go to the loo in there rather than in his nappy. This was such a big deal – this little baby COULD communicate – just like any other baby.
A big thing I wanted to be able to do with BRyn was to breastfeed him, I knew there were so many other benefits to breastfeeding rather than just nutrition and felt he needed this – but he couldn’t or wouldn’t open his mouth very much. Why we never did find out – it was hard to persuade the hospital to investigate this further. The regime of getting him to take milk by mouth was a major thing for us – we started off by dipping a cotton bud into milk and touching his lips and allowing him to suck the milk off, we then moved onto a syringe which was a huge hassle – trying to squirt milk in slowly with a syringe is nigh on impossible and Bryn often ended up looking rather surprised as he ended up with half the milk in his mouth at once. We then moved on to the SNS system – a bottle with a long tube that can be used to help babies with poor suck or to help mums who are needing time to produce milk. We would fill the bottle with milk, tape the tube to our finger and then get Bryn to suck the milk through the tube – he did very well but it was a huge faff. And not very practical to take out and about and with everything we needed to take with us we needed to keep it as simple as possible.
And of course Bryn LOVED to take milk this way – to have the taste and texture of the milk, to be able to control himself how much he wanted and when he wanted it. One day at home the bottle had emptied and Bryn was making it very clear that he was still hungry and the idea of cup feeding popped into my head. I had seen this done when Bryn’s brother was small so felt confident that I could do it. His milk was stored in small pots with a screw top lid (about the size of a shot glass) and there was a little left in there.I took it,propped Bryn up and carefully lifted the pot up to his lips and as he opened his mouth a fraction poured some in.
His little face was a picture- to suddenly have so much milk in his mouth!His little eyes lit up and he drank the rest of the pot and went off to sleep.
I was bouncing off the walls when Midge came home. Couldn’t wait fro Bryn to wake up and show off his new skill. We immediately decided we needed to get him a proper little cup which would be nice and smooth on his lips (we were quite sad that a little beer mug style shot glass we had had for ages had gone missing as we thought that would be great)
Eventually we found little measuring cups in a kitchen shop that had measurements down the side which meant we could keep an eye on how much he had .
Now trying to persuade the medical staff that this was what we were doing was a joke. They needed to SEE it for themselves – for some reason they wouldn’t believe us and therefore we couldn’t get assistance in working out how to see if he could take all his milk this way. We had several visits from a s o called feeding expert who of course always arrived when Bryn was asleep.
Bryn also learnt to recognise two signs – one for milk and one for toilet. This meant he was able to communicate with us more easily – I still remember the spark in his eyes when he made the connection between the sign for milk and drinking milk.
It all culminated one day into what is one of my favourite stories. One of Bryn’s regular consultant visit. I was holding Bryn who gavea grunt – I signed milk – no response, signed toilet – got a response.Midge dug out the foldable dog water container that we used for ‘on the go’. While I stripped off Bryns clothes, held him over the dog water bowl and he had a pee.The consultant picked her jaw up off the floor and had a peek in the bowl to see the wee. He then grunted again so we got out the milk and his cup and he drank his milk up. Both the consultant and the hospice worker where silent. They then expressed their amazement about what they had just seen.
But it was what was needed for them to start being proactive about helping us with feeding him. I think the saddest comment I heard from the consultant was that they ‘wouldn’t have recommended cup feeding these days for fear of aspiration’ which meant that had I not have done this myself Bryn would never have tasted milk, never had that experience.
So another lasting memory I have is of Bryn swilling milk round his mouth – much like a wine taster – really savouring the flavour, the warmth the texture of the milk and really, really enjoying it.
So he confounded them – everything they thought he couldn’t do he did, and more.