Belle Update: July 21

She may be little, but she's fierce.

Belle continues to fight her tubes. The prongs irritate her nostrils, and sometimes she rips out the entire apparatus. We're forced to keep her mittens on her hands at all times, otherwise she has too good of a grip.

We kindly asked the staff today to re-tape her cannula using stronger tape. Arabella's too feisty for her own good.

She just wants to break free, and mom and dad do too. "Soon Bella, soon", we tell her.

For the last few days, Arabella was in isolation (due to her odd fever a few days ago). Every member of the staff was forced to put on a mask and gown before entering her room. Thankfully, isolation was lifted this morning. Her blood and urine cultures all came back negative. 

Very strange. Perhaps the vaccines had something to do with the spike in her fever. 

We continue to work on her bottle feeding, but the last few days have been rather difficult. Sometimes Bella will take 5mL, other times she will take 20mL, but she hasn't taken more than 20mL in a while. 

Currently she's fed 62mL every 3 hours. It's a lot of food for a tiny Tinkerbell. The milk is fortified with lots of extra stuff, too. Often times it makes her gassy and uncomfortable, which is unfortunate, but the fortification ensures she's getting plenty of calories. Bella requires all the calories she can get. She's playing catch-up, of course. 

An occupational therapist told us not to worry too much about the amount she's taking by bottle. Even the smallest amount is better than nothing. Her sucking ability is very good, and that's obviously very important. The trick is not to force her, otherwise she will start to develop an aversion to bottle feeding. 

Her reflux is constantly bothering her too. It's an ongoing battle. 

So we'll let Belle go at her own pace. If she doesn't want her bottle, the rest goes into a large syringe and we program the machine to slowly release the milk via her feeding tube. 

Her meds and supplements are slowly starting to decrease. Those are her 9 o'clock syringes. We usually push them through in the middle of her feed. Her potassium supplement can especially make her feel nauseous if there's nothing else in her stomach.

Oh, the things we've learned. 

We're really glad to have our private room. It's liberating. It's a lot more work, but it's one step closer to being home. We need to be ready for discharge anyway, and we're proving to everyone that we can handle it.

Sending us home with feeding tubes? No problem. Sending us home with oxygen tanks? No problem. Sending us home with meds, supplements, milk fortifiers? No problem at all. 

We'll do it all if we have to. Please just let us take our little girl home.