Big Brother's a Big EATER!

Last week Ayden had a cardiology appointment. We weaned his Lasix to ONE dose a day, so he needed a chest x-ray to confirm that his body wasn't accumulating any excess fluids. Everything checked out okay, so we then met with a nutritionist to discuss a tube weaning plan. Ayden has since been on that plan, and he is doing fabulous! Essentially, we got rid of two daytime tube feeds. As a result, Ayden's goal by mouth is 250 calories. To makeup those calories, Ayden has been eating yogurts, pureed fruits, pureed vegetables, and puddings. His schedule is as follows:

(times are approximate)
7:30 AM wake up
8:15 AM breakfast by mouth
9:00 AM 150 ml formula tube feed (15 min. bolus)
12:30 PM lunch by mouth followed by 130 ml water gravity feed
NAP
After nap 130 ml water gravity feed
6:00 PM dinner by mouth followed by 130 ml water gravity feed
9:30 PM 200 ml formula tube feed (20 min. bolus)
1:30 AM 200 ml formula tube feed (20 min. bolus)

As Ayden increases his calorie intake by mouth, our plan is to slowly get rid of the 9:00 AM formula tube feed. Ayden is also engaging in impromptu feeding activities during the day. In addition, he is taking sips of water or juice from an open cup. As you can see from the numbers above, I do not feel as though Ayden is taking enough liquid by mouth, so my hope is that we can work more diligently to find a way that is comfortable and effective for Ayden to consume more liquid.

We are very proud of Ayden, as we know this is an adjustment and challenge for him. He has thus far proven his willingness to push himself to eat the necessary calories. YEAH, AYDEN! Thank you, Lord, for helping our little man get the job done!

Ayden is a tad bit messy when he eats. He especially loves to smear food in his hair! I don't care how he eats though, as long as he is eating!

Two items of note:

1. Ayden has not vomited for months! This change has been huge for our family. Not only does it mean that we aren't cleaning up throw up 2-3 times a day, but it also means that we don't have to cringe with worry (and sadness) every time it happens. Not vomiting probably is helpful for Ayden's eating as well. So... did he grow out of it? We don't think so. We think there was a medication conflict. When we took away his Nexium (yes, a reflux drug), he stopped vomiting. Supposedly, one is not supposed to mix Nexium and Digoxin, a heart med that Ayden takes twice a day. Though we brought this topic up at least twice to physicians, we were told that the likelihood of the combination being a problem was slim. We, however, think there was an issue.

2. Ayden is down to four medications, three of which are heart meds that he will probably take for as long as they are deemed effective. The fourth medication, Lasix, should be gone by February. WHOO HOO!