Day 19

Taylor woke up with a cold today. She's full of boogers and has a nasty sounding cough. I think her dear sister passed that on. Marissa it's nice to share, but some things are better kept to yourself! Now we're on isolation.

We haven't been too successful with the thickened oral feeds today, as soon as she starts sucking on a bottle, she can't breathe because she's so stuffed up. So I haven't pushed that since lunchtime, just giving her a break and using the tube today.

I had the rest of the NG tube training today. Just call me Nurse Natasha, I can officially perform all steps in NG tube feeding...inserting and removing the tube, checking placement, flushing, administering meds, setting up the feeding bag, running the pump, cleaning and storing the pump bags, and doing syringe feeds when necessary away from home. The home nutrition nurse brought me the pump and pole today that we'll be taking home as long as Taylor's on NG feeds, pump is worth $1500 and pole on wheels is worth $800. She also brought two weeks worth of supplies...NG tubes, lubricating jelly, pump bags, extension sets, 10cc slip tip syringes, 30cc slip tip syringes, 60cc slip tip syringes, transpore tape, pink tape, duoderm, and tegaderm. We will then order a month's worth of supplies at a time and pick them up from the warehouse down south near us. This is all covered, we don't have to pay anything. We are so fortunate to live where we do.

Waited a long time today before seeing the doctor. She didn't come by until nearly 4 o'clock, and the OT came with her. Due to the change in the way Taylor has been managing her pureed meals, they'd like me to not give them until we have the FEES study done. Unfortunately it didn't happen today, we have been scheduled for it on Thursday. So her 3 meals will be replaced with 49 grams of 36% whipping cream and 46 grams of unsweetened apple juice. Through the tube. So until the study happens, Taylor will be taking everything through the tube apart from a small amount of thickened fluids 3 times a day by bottle.

Mom was here for a short time this morning and brought with her something special for Taylor. She got a plain white diaper shirt, had it dyed with the Supergirl logo in pink, and finished it off with a few pink Swarovski crystals. She needs her bling! It is so cute, thanks Mom!!! I had Taylor in it today, but Francis got chocolate all over it when he was here before I got a picture of her in it! So I took a picture of the shirt by itself and used Photoshop to remove the chocolate mark...