Carlee is suppose to be eating every 3 hours (minus one night feeding) to help her intestines grow and adapt but lately she just hasn't been wanting to eat as much as she use to with each feed. After a few sips, she just pushes the bottle out of her mouth and acts totally disinterested. So they have given us something called Microlipids to add to each bottle, which will provide more calories with the little bit she is eating. The goal is to keep her progressing along her adjusted growth curve--however, if she consistently falls below where she should be (like she did this time), they will have to put her on a feeding tube. We are really praying she starts eating better so we don't have to deal with a feeding tube in a addition to TPN.
Carlee chillin in her car seat while waiting for her doctor to see her.
At her last clinic (this is what her monthly doctor visits are called) with her GI doctor and dietitian, they were really impressed that she hasn't had a line infection yet. Line infections are extremely dangerous but also very common in short gut babies. I asked her doctor if he's ever had a short gut patient not get a line infection and he said "no." It's not an "if" she gets a line infection, but a "when" type of thing. Sooner or later she will develop one, so they've trained us on the symptoms to watch for. We've been told that if she ever develops a fever at or above 100.5° that we need to rush her to the emergency room immediately. Line infections can be life-threatening and usually require an extended hospital stay, so we are just hoping to thwart off her first one as long as possible.
And here's a little cell phone clip of our beautiful Carlee just chillin.
We love this precious angel so much! I say this all the time, but she is truly changing us for the better. Change is usually hard and we often resist it and fight against it. We have certainly done that through this life-altering experience, but in doing so, have also learned that shifting our perspective from the now to the eternal makes ALL the difference in the world! We feel so beyond blessed to have been chosen to help this amazing little fighter along her earthly journey.
Favorite quote this week:
"You can't change the direction of the wind, but you can adjust the sails to reach your destination."