Wow. Thank you all for being so encouraging. We really appreciate all of the support and uplifting messages sent our way. It is so cool how, just when you feel like you're at the end of your rope, you realize friends are there holding the rope for you and helping to throw out extra slack to make that rope longer. The encouraging scripture has been the most helpful. Thank you so much!
Joshua had another eventful day (no, that's not a good thing). He lost another 20 grams last night, and he wasn't eating as much volume as they like to see. Then during the night last night he ate only 10 mL over six hours (which isn't much compared to the recommended 63 mL every 3-4 hours). We were pretty frustrated with this because that's what happened the last time he failed his ad-lib trial, but the nurse on duty hadn't had him before, so she didn't know that piece of his history. James' papa grizzly came out (or surgeon's personality with little tolerance for mistakes, whatever way you want to look at it) because the nurse should have woken Joshua up to eat after four hours, but she just let him sleep. He was polite, but he made it pretty clear we weren't happy with the care Joshua had overnight. Joshua had to have the NG tube replaced, and he is now back on scheduled feeds. Chalk that up to a failed ad-lib demand trial. The doctor is trying to plant a seed in our minds that Joshua may need a G-tube, but we are still pretty set against that. We are praying it will all come together soon, so we can avoid that surgery and potential complications and overall hassle associated with it.
About the poop issue...I know I should say stool or BM or #2 or whatever else people would consider more cultured. But c'mon, it's baby poop. What do you see in a diaper, baby stool? No. Baby BM? Naw. It's all baby poop in my mind. Feel free to censor it in your mind as you read if you disagree.
Annnnywho...he had a couple of squirts, but not enough, so today he got another field trip down the exciting halls of the hospital to radiology for a barium enema. Let me tell you, he is one brave kiddo. Tough just like his brother, he didn't cry or fuss at all. I was so proud. The good news is it cleaned him out and, hopefully, got all the contrast from his swallow study out of him. He seemed much more comfortable afterwards. The even better news is it was completely normal, so there isn't an obstruction or stricture related to his history of NEC. Whew! Even better than that, the x-ray he had first thing in the morning was worrisome to the radiologist (and us) because it looked like he had a perforation, but they got a better look at it, and there was no perf (thus avoiding surgery).
The doctor says Joshua has decreased gut motility, where things just move through more slowly than they should. If he doesn't pass more overnight and tomorrow, they'll start him on a new medicine to speed things up, but they want him in the hospital for a week on it before sending him home. I'm just giving up on imagining life with our family together at home. It makes it much less disappointing to not have any expectations.
To end on a positive note...Joshua is doing very well off the diuretic and sodium. His work of breathing looks great, and he's comfortable. That's what's most important.
Good night!
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