Playing with his new hospital hippoLove my lavender hippo
Eli is starting to settle back into life at home. He is still very irritable, which makes it pretty hard on Mommy. Eli is fine when he is sleeping in his swing (1-2 hrs max) or if I am holding him, rocking or singing to him. He screams in pain whenever I try and leave him- unless he's in a deep sleep. I feel so bad, I am only able to give him pain meds every couple of hours and I do my best to comfort him. I can tell pooping is still very painful for him. Eli screams for 1 hour+ before he is finally able to poop and then I can usually get him back to sleep for an hour. I just pray this will pass soon and Eli will be more comfortable.
Eli was 3182 grams this morning (7 lbs 0 oz). I know this is probably a more true weight then those we were getting the past 2-weeks due to his dehydration/obstruction extremes.
I talked to his GI doc's nurse this morning and she relayed the message that he wanted a central line placed in the near future. I really don't think this is best for Eli, but I am losing docs that also feel this way. I talked to Eli's dietitian and she agrees that there are more options to try with Eli's enteral feedings before we resort to TPN. It seems unfair to Eli to judge his growth over the past month when he has had so many issues (independent of his absorption issues) that set him back. We are not planning on doing Synagis this month, so I just pray Eli won't get anything that sends him into his awful diarrhea spiral.
We are still trying the 24 cal formula w/ 3% pectin. We just added 1 tbps Benefiber/ 4 oz formula to try and take advantage of Eli's intact colon and help slow things down. I know there are more options to try and plenty of prayers to be said to get Eli to grow.