6 Months Old

This sweet girl is 6 months old! She just started laughing, which has been so much fun. She can sit with support and her neck is really strong. She is constantly sucking on her hands and loves to follow us around the room with her eyes. Developmentally she is right on track based on her adjusted age. Growth wise, she's lagging a bit and hasn't been gaining weight quite as quickly as her GI doctor would like. She hasn't gained anything since last month and still weighs 10 pounds (FYI: this is what she weighed the last time she was weighed 2 weeks ago. She gets weighed at her pediatrician appointment tomorrow, so hopefully she's gained some by now).

Carly is suppose to be eating every 3 hours (minus one night feeding) to help her intestines grow and adapt but lately she's only been eating about half as much as she usually does 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 up the growth curve--however, if she consistently falls below where she should be (like she did this time), they may 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.

Carly 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.

My sweet niece Zyan has been volunteering her time while she's been off track to hold and care for Carly. Since bringing Carly home, it's been really hard to keep up with the housework (I'm seriously considering hiring a maid), so having Zyan help out a few hours a week has been so wonderful and has allowed me to get caught up on some things around the house.

Yummy.

Carly is considered immunocompromised, which means she is at a high risk of getting infections because of her central line. We have to be so, so careful to keep sick people away from her, which is why we rarely take Carly anywhere. We only take her to Sacrament meeting on Sunday's, to her doctor appointments, and to an occasional family gathering, but that is about it. If you visit us and you are sick, this is what you get to look like...hehe.

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." 

-Jimmy Dean

Life rules!