Bella is still not able to tolerate her tube feedings and we are going on day 5 now. It just runs right through her as she sleeps at night, not bothering to stop in her intestines and provide the much needed nutrition it was intended for. When I put her on the scale at 2am last night after her 2nd of 4 overnight trips to the bathroom, it appeared that she was down about 7lbs. Now for many people like myself, a 10%+ loss of body weight in 5 days would be great for bikini season, but Bella already looks fabulous in a two piece (she shows off that g-tube like it's a fashion accessory - She's a tubie and PROUD of it) and the weight loss is actually a bit startling. It's now been 5 straight nights of virtually no nutrition. I called her gastroenterologist around 8am and left a message. Hopefully, they feel the same urgency to get this resolved as I do. ((twiddling thumbs and staring at the phone)) Prayers appreciated!
So after a half dozen phone calls today, we finally have a plan in place to hopefully get Bella over this sickness rut she seems to be stuck in: Pray. We will start with that anyway, and then follow the instructions of her physicians who have been blessed with knowledge and understanding beyond mine. After speaking with her pediatricians office and her gastrointerologist's nurse, we have decided to put Bella back on a feed of only pedialyte this evening. Her gut needs a rest. Tomorrow night she will get half pedialyte and half formula. If she tolerates it, great....if not, we take her in. Thankfully, despite her weight loss, she is not showing signs of dehydration or electrolyte imbalance and therefore there's not much more her docs can do for her that we couldn't do here. Thank you for lifting her up in prayer.
I also wanted to let those of you who are Facebook know that I have started a Facebook page for Bella called More Birthdays for Bella. Here is the link: https://www.facebook.com/MoreBirthdaysforBella If you are on facebook, click the link above and then "Like" the page to receive regular updates about Bella. Many of them are the same or similar to what I've posted on here, but often one website or the other (facebook or caringbridge) will be easier for me to access. Also, Facebook is a bit faster at posting notifications, which can be convenient especially when Bella is in the hospital. Thanks!!