So the plans have changed for Lyla. Originally they wanted to try the Gtube if she didn't spit up after a couple of days. But GI, the cardiologists, Dr's and nurses agree that they want Lyla to have a good solid 2-3 weeks of gaining weight before trying to feed into the tummy. Therefore they do not want to try the Gtube right now. This mean that Lyla will likely get sent home with the ND tube. So far Lyla hasn't been too great with gaining. She does a little at a time and then maintains a day or two and then gains and back over again. So we are really hoping Lyla will start gaining consistently so we can get that tube removed from her nose and get food going to her tummy again!
Other than that, Lyla's reflux continues to make her gag and wretch. I feel so terrible when this happens because she looks so miserable. It's a terrible feeling, and it makes her heart rate dip way low (80's).
Made some really great eye contact today! She hasn't been the best at focusing her eyes on an object, or person, and today she was looking at me and Keeping her eyes locked on me! It was really exciting. Even her primary nurse Cheryl noticed and said she thinks Lyla recognized her name today.
Went down to radiology to replace ND. It was just barely where it needed to be in the small intestine and coiled in the stomach, so they wanted to get it in perfectly. Lyla, of course, did not like this but she did a great job recovering. After they came out of radiology I said something to the nurse and Lyla cocked her head toward my voice and was looking for me! It was awesome, and I really wish I could have just picked her up right then and held her.
Received RSV shot on Sunday.
Feeds are now 25ml from 22mls, as of Saturday?
That's great that she is making eye contact! So happy for you!! Ok, we almost have your package ready so look for it in the mail this next week. :) Talk to you soon!
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