A small bump in the road

I knew it was going to happen at some point, but it's still very frustrating. 

On Monday, we started oral feeds and were told to take it easy because her swallowing needed work. She was working too hard to swallow. Babies work really hard to eat and can burn more calories than they're putting in. For Amelia, that's a big deal. She needs to gain weight really well. 

We started around 10-15ml, and after a couple feeds, she was doing really well with her swallowing and coordination. She made it clear that she wanted more by mouth, so we went really slow and let her drink as much as she wanted in 30 minutes. The most she took was 1.5 oz. It was awesome, and I was so excited because she wasn't having to take much through her feeding tube. She did well for 2 days and then yesterday she started throwing up after oral feeds. She is taking longer to start feeding and then she started having trouble swallowing again. She has thrown up her feeding tube, which has to be replaced. It is not comfortable for her and it's awful to see her have to go through it. 

Last weekend Amelia was inconsolable and her doctors thought maybe it was withdrawal from her sedation medicine, so she was given medicine to help with the withdrawal. It made her incredibly sleepy, so they took her off the medicine. They think that she could still be withdrawing and that's what is causing the issues. She was put back on the withdrawal medicine at a smaller dose. We're hoping that she won't be too sleepy and that she'll start eating better. If not, the doctors don't know why she is having trouble.

This whole process is such a roller coaster. I am so tired of being in this hospital. I am tired of Amelia being poked and bothered. I am grateful, though, that we're in such good hands. I just want everything to be fine and to be home. 

Right now we're needing her to eat well because if she doesn't start eating well by mouth, they're going to schedule her for surgery to have a G tube put in her belly. On one hand, her having surgery would be so frustrating, but on the other hand, a feeding tube would get us home faster. She'll have it put in and then we'll learn everything we need to about it and then go home. We really don't want to go home with the NG tube in her nose, because it bothers her a lot, and if she pulls it out, we'll have to learn how to replace it...no thank you. In a perfect world, this medicine would be what she needs, she would be able to eat really well, and when she gets weaned from this medicine, she would still do well. Then she would gain weight and we could go home without any feeding tubes. 

So there it is...that is our update. Please continue to pray for sweet Amelia. 

Thank you, everyone.

Love y'all, 

Kelly