Well, weaning is going all right so far! We ended up changing the plan a bit. The original plan was to wean 3 hours total from Lincoln's 12 NG hours. We did this for 2 days and then had an update call with the pediatrician. He said he'd really like to see how Lincoln did with a full 6 hour cutoff, so we gave it a try. It's been 4 days since we cut off 6 hours and so far he's met his required ounce intake on 3 of the 4. Every 8-10 days Lincoln has a day where he doesn't eat much and one of those happened over this past weekend after the weaning started and he missed his goal, so we're hoping another one of those doesn't happen for at least another week.
The next step for weaning is to meet with the liver doctor on Thursday and show him, the nurse and the nutritionist all of Lincoln's intake tracking before and after the 6 hour weaning. We have to be able to show that Lincoln is still getting all of his required ounces, and hopefully that he's getting just as many calories as he was before the wean. We'll also get bloodwork done on Thursday to check bilirubin, cholesterol and vitamin D levels. We're hoping for low bilirubin and cholesterol, high vitamin D.
We also met with the urologist this week to talk about the ultrasound from last week. His hydronephrosis (fluid in his left kidney) is unchanged and the ultrasound showed some increased echogenicity (this is a bad thing for a kidney). The urologist feels the echogenicity is negligible and could have just been caused by different settings on the ultrasound machine, so we're not going to worry too much about it. But since his left kidney hasn't improved he has to have a kidney function test. They use dye to see how long it takes fluid to move through the kidney. If it takes around 10 minutes then we can continue to wait and see if they hydronephrosis improves. If it takes closer to 20 minutes then Lincoln would likely require surgery to correct the blockage or whatever is messing up the kidney function. We haven't scheduled that test yet, but hopefully it'll be in the next couple of weeks.
John and I are doing all right. It's been a little stressful as we're getting into a new routine with me going to back to work, but we're getting there. Emotionally exhausted, but getting there. This weaning process, and really the health issues in general, comes with extreme highs and extreme lows and can really wear you down. For example, yesterday morning both John and I were so disappointed and discouraged because Lincoln wouldn't eat more than half an ounce at his normal 4 ounce bottle time. Then 3 hours later he ate 5.5 ounces, more than he's ever eaten at once before, and followed it up in the evening by finishing a 6 ounce bottle. He ended up meeting his ounce goal after we were sure he'd miss it, we were so excited! Now Lincoln won't wake up after eating only 3 ounces, while still short of his goal for the day...and so the up and down process starts over again. He has 20 minutes or so to eat a couple more ounces or we have to start the NG feed early instead of continuing the weaning, so I'm going to go and give it another try. All we can do is keep on trying!
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