Where to start? Elle, has been doing good as far as bonding and making progress with gross motor skills but with feeding we have taken a huge step backwards. Elle, has always had her good days and her bad days when it comes to eating. She is loving trying new foods but doesn't eat enough to gain any weight. These last few weeks she has shown less and less interest in her bottle. Which at first we figured she would just ween her self off it and start drinking from a cup. This was not the case, she simply started to refuse liquid all together. This is hard because you need liquids ! As the weeks progressed this got worse. The day she got her tubes put in her ears she was so dry they needed give her iv fluids. After surgery she did really well for a few days and went right back to refusing fluids. This last week it turned for the worse, by Saturday night she hadn't had anything to drink since Friday morning. Dehydration set in we ended up spending 5 hours in the ER getting iv fluids again. She lost more weight again. Poor girl she can't afford to lose weight. We were back in the pediatrician office again yesterday morning, she still wasn't drinking. Despite all our efforts new bottles, new cups, trying to spoon feed water, straws you name it . In my heart I have known we were losing the battle but I really wanted to think she would turn around. Our first short term goal was to get her up to 725 calories a day , with a longer goal of 1020 calories (which is where she should be at her age and size). On our good days with Elle we are getting only around 400 calories before she loses interest in eating or drinking. Some days we would get 700 but these days were very few. All of this to try to explain why she has been diagnosed with failure to thrive. It's hard to explain because she is doing great trying foods just not great eating them. As her food therapist said she is still at around a 3 month old in eating, she is suckling her food and not chewing.
So today Miss Elle got a NG tube put in. Its a temporary thing (hopefully) to try and get her body use to having calories and work on expanding her stomach. Also to keep her hydrated. Which is huge! No more hospital visits for iv fluids. So far she is doing great with, no tugging or pulling on it. We are praying she keeps in tonight.
