Safe to feed or not safe to feed that is the question..

So the doctors little experiment gave some insight to what's going on with Miss Reagan. After 24 hours with no feeds by mouth she seemed so much better. She was more relaxed and comfortable. We were able to do more tummy time without her getting stressed out. She seemed happier. The doctors in step down ICU wanted to get a feel for what her oral feeds were like, so they decided they wanted to watch one. The senior resident, resident, and her nurse came in and watched her feed. They saw the same things I was seeing in her, and decided they wanted to watch one more feed. So at her next feed she did even worse. They worry that she is silently aspirating still and they also worry that the contents of her stomach are coming up and she is aspirating on it. Her breathing was also very labored during her feed, and they don't want her working too hard to feed, it can become unsafe. They decided that for now she is not safe to feed by mouth so she switched back to Ng tube feeds. In the morning she will be reevaluated by the swallow team and they will decide if they think she needs another swallow study to rule out aspiration.

In case you were wondering, some of the things that happen during her feeds are:

Increased work of breathing

Noisy breathing 

Flaring nostrils

Turning blue around the lips 

Coughing/choking during and after feeds

Sweating 

Red watery eyes

Crying during feeds

Arching her back during and after feeds

Wet gurgling sounds during/after feeds

Crying for hours after feeds

Stressed out look in her eyes 

Miserable looks after feeds

She just had her first Ng tube feed since her oral feeds last night. And she is so much more comfortable and she is quite, no abnormal noises. The nurse noticed there is a HUGE difference in her when she is not feeding by mouth.

Last night we snuggled before I put her to bed, because she was so worked up after her feeds. She is my snuggle buddy! Love her! <3

Post an update when I have one. Also wanted to add a big THANK YOU to all our friends and FAMILY for their support through all this. Especially those of you who have been taking care of my other baby Addison Penelope. I appreciate you!