FOOD!

On Wednesday Ana had her modified barium swallow study. A barium swallow study has the patient sit in a chair and swallow, all while they have this huge machine that does a constant x-ray to see how things go down and where they go while swallowing. For babies, they do a thinner and thicker consistency, and see how they do with each. Typically the thicker solution is easier and the patient does better because it's heavier and easier for them to swallow it correctly. In Anabelle's fashion, she decided to show them this is not always true. She aspirated with both solutions, but worse with the thicker stuff. Aspirating means liquid (or anything foreign) gets into the lungs. This can lead to pneumonia, due to the body trying to remove this foreign body. Luckily, so far, Anabelle hasn't shown any signs of infection. 


On Thursday we saw the GI. Finally. I love new doctor appointments because they always try to get her height... Some attempt to get a number, most just say ok, we'll put unknown... The GI attempted to. They guestimated 53 cm. That's 3 more then when she was born! But again, who knows if either of these numbers are accurate, and if so, how accurate they are. It's also fun when they want to weigh now. I explain that she has casts on, and this is usually a good 3 minute conversation. Just explaining arthrogryposis to most medical assistance, and then explaining the purpose for her casts. I mean, I don't mind, I just figured that they would have this charted so I don't have to explain it 5 times a week.. I digress. The GI doc came in and we talked about her issues for about 5 minutes, and she went into what she wanted for her treatment plan. I figured I'd have to lay everything out, explain how she is up every hour wanting to eat, how I'm dead tired and it's not even working because she's not gaining.. blah blah blah. But no! The doctor barely let me talk and was asking my opinion about a NG and G-tube. It was music to my ears. She wanted me to bring her in and have her admitted for all of this just to track her growth on a NG and make sure she is actually benefiting from it. I felt like she took an elephant off my back! 


Yesterday we went into Sutter Memorial, got all settled in, and eventually got a NG into Miss Anabelle. Sorry, NG is a feeding tube through the nose to the belly, and a G tube is like a little port in the belly straight to the stomach. I don't think she likes it too much. She seems like she is wanting to eat orally still, but luckily she still likes her pacifier! I need to ask the doctor about some options to make sure she still gets the oral stimulation and doesn't lose that desire to eat orally. Right now she is on continuous feeding, and getting 20 mls every 2 hours. Other than that she is doing pretty well. Sleeping a ton, thankfully! *sigh* It just feels so nice knowing that she is finally getting what she needs. I wanted to jump up and give the GI a big hug :) 


Ok, now I need a nap. Spending the night in the hospital does not allow for sleep. And luckily we have amazing family that takes Amelia and Allison for us! Thanks Janelle, Haley & Ellie. AND Sheree & Josh! You guys are lifesavers. Don't know what we'd do without you all!!! <3<3<3<3


With love, 
The Polks