We were back at the dietician with L last week but couldn't get an accurate weight as she didn't want to get on the scales - she was on day 4 of no poo and when that happens she's in no mood to do much of anything. The dietician is 'very concerned' about her and has asked the health visitor to weigh her every 2 weeks to keep a close eye on her weight.
So I took her in this morning and after a little gentle persuasion she stood on the scales and is 11kg. This isn't good news as it means she's now right off the bottom of the growth charts.
The dietician is still talking about nasogastric tube feeding but our Paediatrician has only just come back from holiday so we're still waiting to hear his opinion.
I feel like I can't win - on one hand I'm so desperate to avoid the NG tube as I'm so afraid of it distressing her but on the other hand she is effectively starving. It's so difficult to know what's for the best. I worry that the tube would discourage her further from eating orally but the dietician has said that sometimes it can actually kick start appetite. I guess it would take off the pressure and stress and maybe that in turn would encourage her more? There are so many unanswered questions, some that can't even be answered unless it does happen.
I keep hoping that one day things will miraculously get better. But this has been our lives since she was born, so I guess that's unlikely. And she's perfect just the way she is BUT I do wish she was healthy.
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