While in the hospital, Ali is getting a very concentrated formula so once she meets her “time goal” we are going to start increasing the actual amount of formula so that she can still get the required amount of nutrients when using normal formula. We are working towards the goal of eventually bringing Ali home as a tube fed baby. To bring her home though she needs to be able to tolerate the same amount of formula that any other baby would in the same amount of time…I’m thinking about 100ml per half hour every three hours!

Jason and I are going to be trained to take care of the feeding tube for Ali, which is pretty scary.  We have to learn to put it in, take it out, feed her, medicate her etc.  I never would have imagined that I would need that particular set of skills to take my baby home.

Cardiology was in yesterday too and there is some concern that they may have found another issue with her heart but because she has a cold they can’t be sure just yet. They are watching her closely and will decide on a treatment option once her cold is gone.

My mom is leaving tommorow morning. I have really appreciated having her here with me.  I’m going to miss her but Jason will be arriving tomorrow for a few days which will be great!

Ali is not tolerating her increased feed volume (she’s back to vomiting violently) so it’s back to the drawing board to come up with a new plan. GI will be in later to talk to me about a bunch more tests that we may need to do.

At the advice of the Speech Pathologist we are no longer going to be attempting to give Ali any bottles. She is just not ready I guess and the chance exists that she may aspirate the formula into her lungs. So we are going to go back to working on sucking her soother and we’ll take it from there.

I feel really discouraged today! Some days are really tough!

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!