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Saturday 8 June 2013

Feeding

  Feeding is a great big raw painful area in our house. Pup and food do not go together and it has been a massive issue to us over the years he's been with us.

Pup was 20 month old when he came to us. He wasn't eating, apart from some starter baby food with no lumps. He had severe reflux, and could be sick at the drop of a hat. So he was surviving almost completely on infatrini, a milk designed for babies who fail to thrive. He had no appetite, his foster carers told us that as a baby he'd almost never cried - he never got hungry. They had struggled to get weight on him, and in their busy household the easiest way was milk. So each mealtime he had a bottle of milk followed by whatever he would eat.

  For the next two years feeding Pup became a nightmare for us. I dreaded all mealtimes. They often took over an hour I was frequently reduced to tears by the horrendous battles we had to get any sort of nutrition at all into Pup. I felt like a total failure as a mother - after all isn't feeding your kids a primary pat of the job? I was obsessional. I had plans to be such a good Mum, and when our little boy arrived I couldn't even feed him.

  Where do I start in describing his feeding problems? He didn't know how to eat. He didn't want to eat. He had missed a lot of developmental milestones concerned with feeding. he didn't know how to swallow more than tiny morsels. And he didn't care. He would keep food in his mouth like a hamster. I've seen a lump of banana stay in his mouth for over an hour, he could stuff his cheeks. He was also grieving his foster family and dealing with attachment stuff and insecurities that can make feeding a big issue in a healthy child. He had no interest in feeding himself; we were feeding him for months. 

  And he had Cystic Fibrosis. He had a body that was less efficient at digesting food, that struggled to gain weight. His calorie requirements were higher than other peoples. We kept taking him to clinics where the Doctors and dietitians would obsess about his weight and what he was eating. It didn't make for happiness. Threats of feeding tubes hung over us. We saw being tube fed as a failure. Also the Doctors would not recommend he get a tube unless he lost more weight - and he was (and still is) just about maintaining his weight enough. So, we could take the pressure off, let him eat or not eat as he liked, knowing he would lose weight... and get a gastric tube. But the risk was too great CFers can lose weight terrifyingly fast. And there is a very strong (and not well understood) link in CFers between being underweight and lung infections - which could be fatal to him. 

  We had dietitians, psychologists and speech therapists working with us to help him eat. But I don't think any of them really understood our problems in full. So many people tried to give us advice. Even close family found it hard to accept they way we pressured him into eating. So we felt really isolated. Friends would tell us to let him be. That no child ever starved himself to death (not true!) that we should let him eat what he liked (he didn't) let him graze (he didn't)  We could leave sweets and chocolates lying around the house and he'd not touch them. And he could get hysterical if we put too much pressure on him. And there was so much pressure on us that sometimes we did pass it on to him. 'Don't make a big issue of it' we were advised. But it was a massive issue. We couldn't hide that. We were so worried we were getting it wrong. We nagged. We still nag.

  Things gradually started to improve. Sloowwly. Painfully. He started hamstering less. I was dreading mealtimes less. And Tigs arrived. We suddenly had a child that wanted to eat, that enjoyed food! in fact Tigs seemed to comfort eat for the first couple of months until he got used to us. he was a role model in eating for Pup, and made us feel so much less focused on Pups issues. Even when Tigs came out with a nasty egg allergy it didn't phase us much, although it was a pain as scrambled egg was one of Pups few successes.

   And over the years things have got better. Pup will never be an enthusiastic eater. Even now he will turn down sweets. But he understands he has to eat and why, he tries, although he is still painfully slow. And we've had to make compromises. Tigs gets more crisps and unhealthy foods than are good for him (how could we give his brother all those fattening foods yet refuse them all to Tigs?) Pup still needs nutritional supplements and probably always will. But I no longer dread mealtimes, and I think Pup doesn't either. Maybe he still will need tube feeding one day. maybe we will all come to terms with that. As he gets older he is more resistant to nagging - which I hate doing anyway. He decides more and more for himself what he is going to eat. We have to learn acceptance. It is painful.

3 comments:

  1. What a trial you have all been through - I'm so grateful that the food problems I have encountered so far have been mild ones. But you seem to have made some progress, which is great. I'd love to read more about the different ways you approached this if you fancy blogging on this subject again.
    #WASO

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  2. You've all been through so much, but as Suddenly Mummy says, it does indeed sound like you're making some progress.

    I understand how it feels for people around you to contribute their opinions without fully understanding the situation, and along with the huge pressure you have faced in supporting Pup, you've had to battle against those opinions (however well meant they were) too. Bloomin' hard work!

    Thank you for sharing this with the Weekly Adoption Shout Out x

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  3. What a terrible time you've had and how much stress it must have brought to your early days together, I really feel for you. That loneliness can come from so many aspects of being an adoptive parent, when others just don't understand the approach that is needed. I think it sounds like you've been incredibly strong and done so well to get to where you are now.

    Thanks for joining in the Weekly Adoption shout Out.

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