Depleted and not Many Answers


I'm hanging in there, just exhausted and getting the run around. 

So no news really. The new pediatrician on call here- doesn’t want a feeding tube. He wants to fortify the formula more to 30 calories an oz. (It’s at 27 now).  He was a bit off, and seemed cool at first, but he didn’t really listen to my concerns.

The dietician just came in, she wants the feeding tube bc he isn’t getting enough liquid. If we fortify to 30, formula gets too thick. He’s already constipated on the 27 bc his stools are hard rocks. So, she wants tube. She suggested, “Bc he loves his purées, he could eat those during the day, and some bottles like he is, then at night, finish the needed calories.” That way we know he’s getting everything he needs and doesn’t lose the feeding exercises. 

GI doc came in and assessed, he thinks it is an issue where his stomach takes too long to empty so he is full really quickly. This will take some imaging and more tests, so we will be here longer. Basically, the stomach doesn’t contract and stuff. He also said there isn’t really a way to properly diagnose on a baby... so there’s that. Here’s More info here if you’re bored. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792
As for the tube, he doesn’t like the idea of it going in a baby at this age. When they are super young or older. I mean, it shouldn’t take an hour to feed him 3 oz. Something is wrong.


I mean, if he doesn’t need the tube- cool, but mom gut tells me he does. So far, he’s had 450 calories and it’s about bed time in an hour- so, do you guys think he will be able to meet that 1k goal? Ha, didn’t think so. He’s not anywhere close. 

We still haven’t seen the OT. He/she is supposed to be helping with feeding. He’s seen an OT, and although very helpful, this is a NEW(ish) issue. (We originally thought all the feeding issue were bc of his heart).

Anyway, here’s a pic of me depleted and annoyed at Kaiser and another of Em FINALLY sleeping (Hey, I wasn’t going to move the ticking time bomb with his foot stuck out). It’s great he has such a huge team on his side; however, they all want to see him randomly throughout the day and wake his ass up. 😳

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