We have talked with the pediatricians about trying to push Ali a bit in terms of her tube feeds. She is not getting nearly enough nutrition so we need to increase the volume of her feeds to get her the calories that she needs to grow (Ali has not grown in length since birth and is still under her birth weight). We also need to condense her feeds because she is pretty much feeding continuously right now and eating all the time may be affecting her desire to bottle feed because she is always full. In short we need to feed her more food in less time. We have attempted to do this before and she didn’t tolerate it well but hopefully as the Digoxin leaves her system, her ability to tolerate food will increase.
We have been trying to give her a small bottle (5 ml) every three hours and will continue to do that. If she learns to bottle feed then we don’t have to worry about her tolerating her tube feeds. She is not really able to suck or swallow effectively yet so we will continue to attempt to bottle feed her and hopefully soon she will learn to bottle effectively.
Ali went into SVT this morning which is a good indication that the Digoxin is leaving her system. The SVT was short and she remained stable throughout the episode so no worries! We may have to look at putting her on a different class of heart medications before she is discharged from the hospital. Her cardiologist is consulting with some cardiologists in Boston about her episodes of SVT because the appear atypical in some ways. We’ll be waiting a few days to decide if we need to medicate her or not.
Today, Ali had her first bath!