Tuesday, February 16, 2016

Foods!

Look at this girl with no tubie!

So we've started doing a new thing with Helena to help her get off that stupid NG tube. We pull the tube during the day, and at night we put it in and using our fancy new feeding pump, we give her a ton of food super slowly throughout the night to make up for what she doesn't get during the day. It's been a rough couple of days adjusting to this new routine, but she's now taking 1-3 oz of formula at every feeding and eating baby food three times a day.

Mmmmm, apples

After a month of no weight gain, and pretty much puking up half of every meal we gave her through the tube we decided something needed to change. So under the guidance of her pediatrician and cardiologist, we engaged in what I lovingly referred to as "Starvation Therapy". We pulled the tube out and offered her the bottle and the food and nothing else for 36 hours. It sucked. She lost a ton of weight, she was cranky and hungry and miserable and it felt awful to know that she wasn't happy. BUT. But at the end of the day she took 3.5 oz from her bottle. She finally made the connection that hey, this bottle isn't going to hurt me, it's going to give me food and make my tummy feel good. I like this. She finally made the connection that the spoon isn't scary, it's got delicious baby food on it (gross) and it tastes better than my formula and also fills me up. Once she made that connection we started doing the tube/pump at night and she's been gaining weight ever since.

In less than a week we went from taking nothing orally to getting a fair amount of formula in her, and eating three "meals" a day. In less than a week we went from her crying and turning away from the bottle/spoon to her opening her mouth in anticipation of them.

Without that tube in, she's a new baby. She's so much happier and vocal and moving more. And, best of all, she hasn't puked once since we started this. I'm doing like 1/4 the amount of laundry I was doing before we started. 

She's still getting the majority of her nutrition from the feeding tube at night, but she's making great progress in taking more and more orally. And we're so happy to see her pretty little face without that tube all day.

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