When Freddie was 8 weeks old he was diagnosed with having a milk protein intolerance & all diary products were banned. Yesterday we began trying to wean him back on to dairy products to see if he has outgrown this intolerance. I feel quite nervous over trying him on it again, the milk protein intolerance was where our real journey with Freddie began.
When Freddie was born we were told on the day of his birth that he had a syndrome. He spent a few days in scbu & he had a small operation at 1 week old. Whilst it was a hard time for us as a family we didn’t really realise the extent of Freddie problems. He was still a little baby & to us appeared relatively ‘normal.’ We weren’t convinced by the whole syndrome thing the doctors spoke about & when he began smiling at us at 6 weeks old i was pretty confident that they must of made a mistake.
The one thing we were having problems with was getting Freddie to feed. He didn’t seem to suck his bottle properly & would SCREAM after a mouthful. We spoke to our health visitor about it and she said it would just be a touch of colic. So we tried every colic medicine going. Nothing helped him at all. I began to dread feeding him as he became so distressed and upset.
We went through 8 weeks of this, several times we discussed how bad Freddie was feeding with our health visitor but everytime she was sure it was colic. Then one day I changed his nappy & his poo was mixed with blood. We headed straight down to the gp who then sent us straight to a&e.
This was when the milk protein intolerance was diagnosed. They were also very worried about how low his weight was & how poor he was feeding. He was seen by many different feeding specialists & tried on many different types of teats but he just wouldn’t feed enough to survive. This was when we made the hard decision to begin using an ng feeding tube. Originally it was only meant to be used for a few days just to get his weight up but 2 years & 2 ops later we still very much rely on Freddies feeding tube.
The trip to a&e turned into week after week spent on the childrens ward & trips in ambulances to other hospitals. This was when we got our wake up call with Freddie, where our normal changed. Reflux, atrial heart defect, stridor, trachel tug, microcephaly, micrognathia, high arched palette…some of the many problems bought to light during our stay. It was a very hard & scary time for us as a family.
Now 2 years on we are ready to begin weaning Freddie back on to diary. The plan is to start slowly, first week just a teaspoon of yoghurt everyday then gradually increase in the hope that his body will tolerate it.
Day 1 Freddie was a bit unsure of the yoghurt!
Day 2 he seemed alot more happy with it
Hopefully this time our journey with diary products will be a bit more straight forward & won’t result in any hospital stays.
You can read more about the different types of feeding tubes Freddies had here https://swanfreddie.wordpress.com/2012/03/24/tubes/