since it looks like we may or may not be having an extended stay at the new nicu, we decided to spruce up eric’s crib with artwork made by eric’s cousinds that we brought over from the old nicu. the artwork is color coordinated with his mobile, no?
other than sprucing up his crib, it was a relatively quiet day in a good way. after days of not gaining much weight, he weighed in a 4 pounds 14 ounces or 2215 grams, which means if he keeps the reflux under control he should hit the five pound mark quite soon. perhaps on his lucky 13 week birthday? also, he’s been displaying signs of being very hungry after his feedings, so after some advocacy on my part, they increased his feedings from 40 cc’s to 45, which amounts to about a whole extra bottle of milk over the course of a day. it’s a tough balance, i think his doctors are wary of giving him too much milk at once since he’s refluxes so quickly, but it’s also not fun to watch him suck on his fist and smack his lips after each meal. everyone will be watching him to see if the increase in volume, exacerbates the effects of the reflux. indeed, after two and a half days of no alarms, he had an apnic episode in the evening, although it’s impossible to know to what degree the increase in feeding volume contributed to the alarm, if at all.
it’s still not clear if eric’s neonatologists believe that the hiatal hernia and nissen surgeries are inevitable. one can learn a lot by learning to decipher eric’s neonatologists’ medical notes and amongst the scribblings we can see that they are discussing the results at a radiological conference, which i take to mean that they’re gathering opinions. if you look at the notes you’ll see that they specifically refer to a GT/nissen procedure where the GT refers to a “gut tube”. with a gut tube you feed your child by popping off a cap on their abdomen and pouring milk directly in their stomach. as with the nissen surgery, it’s been my understanding that GTs were done as a last resort on kids with very obvious esophogeal damage to give the damaged tissue time to heal, but eric doesn’t display any signs of obvious damage. one nurse commented that they the GT was actually necessary to help the esophagus heal from the nissen surgery itself and not preexisting damage from reflux.
if they do decide that he needs the procedere, i think we’ll be getting at least a second opinion, because it sure seems like quite an invasive procedure given that eric seems to be doing so well with the barley feeds. but then again, perhaps they’re seeing something ominous in the upper GI scans? if so, they’re not saying anything directly to us. i’ll wait a day, or two or three before starting to press them to clarify what’s going on behind the scenes.