Learning to eat

Who knew learning to suck, swallow and breathe can be exhausting?

Lucas is starting to get the hang of it though. Over the weekend we worked on both breastfeeding and bottle feeding him. We were able to reduce the calorie of the fortified breast milk he was getting and increasing the volume to counter the reduction. He's tolerating the feeds a little better and has started to increase the rate of his feeds from 1.5 hours to 1 hour.

His oral feeds have slowly increased as well. From 10 ml to 12ml, and today up to 24 ml this morning and afternoon to a whooping 40 ml this evening with daddy. Dad likes to be challenged. We're keeping his oral feeds to 4 times a day now, and letting him finish what we can't do orally with tube feeding. We'll probably increase his oral feeds to 6 or 8 times a day, and then finish up what he can't do with the tube. He does get tuckered, especially at the breast. There's not a lot of control with how fast the milk comes out naturally. At least with the bottle you can control it a little better. We have to be careful not to let him gag or choke while he's feeding. He gets scared and then refuses to eat after that. It's not pleasant, and he's still learning, so we have to go carefully.

So while we're working with this oral feeds, the doctors are still trying to figure out what's wrong with his liver. All the liver function tests have come back showing that it's functionally working. His bilirubin count is still stable at 8, but not decreasing. Two of his liver enzymes have shown a decrease (yea!) trend, but one of his enzyme has risen, but not significantly. So it's a little mixed bag. The specialist thinks that all of this may resolve with time. As he eats more and eliminates all the sludge, the numbers should go down. He suspects there isn't anything intrinsically wrong with the liver, but he can't say for sure. The only sure way to know is to do a liver biopsy, which would be the last resort if his numbers still stay high. So we'll hope over the next few days the numbers will start to show a downward trend and on Thursday, we'll know better.

The test result for alpha 1 antitrypsin came back negative, as did the result for CMV. So, we're still clueless for what went wrong with Lucas's system. All blood tests and cultures have all been negative for any viral or bacterial infections. We're glad he's healing, but it would be nice to know what went wrong so we know how to treat it.

So for now, we wait. We're so tired of waiting. We are so ready for this to all end. We want to go home. We want our family back together. sigh... But we keep plodding along.

I'll end here with an image of Lucas after a quick sponge bath I gave him. I love his 'spiky' hairdo: