We’ll start with nutrition. Nutritionists have their own language; a mix of medspeak, mathspeak and if you’re lucky momspeak too. They give us goals for daily calorie and liquid intake and then we hash out the reality of what she will really tolerate. It’s a lot of give and take until we’re all happy with an outcome.
Two weeks ago we changed her feeding routine. We were doing 16 hours continuous through the pump at a rate of 24 ml/hr (an ounce is 30 mls) with as many 2 or 3 ounces bottles as we could during the time off of the pump (I think the goal was 8 ounces daily). Now we’re supposed to be doing 4 oz bottles every 3 hours and bolus feeding her whatever she doesn’t take by mouth. Bolus means the rate is the ounces she needs multiplied by an hour so if she needs just an ounce the rate is 30ml/hr. Our goal was to get her to take the bolus feeds in half hour time. Needless to say this didn’t work at all. She got way too full and starting having a difficult time breathing and a higher heart rate. Nothing too serious but still not cool.
Last week our schedule was: 9am 4 ounce bottle, 12 pm 2 ounce bottle, 1pm 4 ounces bolus feed over two hours, 6 pm 2 ounce bottle, 8pm 8 ounces continuous at 30ml/hr. This worked pretty well for a few days but then she started to have really bad reflux from it. We’re still trying to recover from the reflux and get her to tolerate a bolus feeding during the day.
Needless to say I’ve unofficially given up on bolus feedings. It’s unofficial because I don’t have the nutritionist blessing but so far (it’s been a week) she’s still gaining weight so I’m not worried. Now we’re doing the 8 ounce night bit and trying to get her to take around 10 ounces during the day by mouth. She’ll tolerate the bottle feedings because she can control how fast she fills up and can stop when she feels too full, an option she doesn’t have with pump feeding.
She’s still battling minor infections and granulation tissue around her g-tube site. We just use an ever growing concoction of topical antibiotics, antifungal and other things to keep it somewhat in check. Her issue is the usual all because of her odd body placements (sorry that’s the best I can explain it in a sentence). In other words her chest shape makes her lung expand where her stomach should be. When they placed her g-tube they moved her stomach over to the correct spot. Now her lungs hit her stomach and “rock” the g-tube from the inside in turn irritating the site (also the reason she has breathing issues when she gets too full). It’s a pain because there is nothing we can do about it. She can get “rocking” irritation from the outside too (just from movement) so we have it all secured to help prevent some irritation. The bad news of this is she’s allergic to tape so she constantly has hives on her stomach. To combat the hives we us hydrocortisone cream, but prolonged use burns the skin. The whole situation rivals the lady who swallowed the fly! We’re just praying she does some more length growth so she gets some space between the lung and stomach.
Yikes, I didn’t intend for this to be a long post! I am writing these posts on lack of sleep with a very full brain so please feel free to ask me questions if something doesn’t make sense!
I'll try and give you a picture reward for reading all these long updates! :)