Our appointment at UNC went very well. Endo was kind of a waste of time, though we did get her sodium and urine checked again. Both were the same (Sodium at 150 still) Lily had still been waking up to "ask" (ie, cry and scream) for water at night and soaking through 3 night time diapers a night. We've been going through a lot of diapers, PJs and sheets these past couple of weeks. We're still waiting on the DDAVP to get here. It's stuck in GA with the real snow. Once we get that we'll start off on a very low dose...we think...more of that in a bit...
The meeting with the feeding team also went really well. Thankfully they were able to move our time up to 11am so we didn't get stuck in what was supposed to be snow and ice (but just turned out to be cold and ice!) It was...overwhelming. VERY overwhelming. And it looks like it's going to be a VERY long road. Right now we're going to focus on getting her weight up. We're going to concentrate her soy formula again and give her at least 32oz a day. She's already up to 16lb 13oz as of today so it's working! We're hardly focusing on purees anymore since she's almost refusing everything. It's just another added stress that I can't bear right now.
After the sodium is regulated and the weight is up then we're going to try and treat the easiest things first. They think since she is refusing to eat, even after having no food for hours, that she might have reflux. Pedi and I don't agree but we aren't experts. So we're going to try a few weeks on prevacid and see how it goes. This would be an easy solution to a very hard problem. After that we are going to try and appetite stimulant because she's really just not interested in eating and never has been. Then we'll move on from there.
Today was where the strangeness comes in. Lily has a fever and cold which took us into the pedi office. Obviously this isn't serious for other babies but for LB, a fever is. We have to triple her hydrocortisone for 24 hours so she can fight off the fever and keep her system up and running as best as it can. We also did another sodium check because she was acting very strange yesterday (tired, puking, fever, confused - scared the crap out of me) and it turns out her sodium has DROPPED to 141 (normal.) SO, what does this even mean? We think maybe that Lily just needs to be on a very low dose of DDAVP OR that she maybe will just need stress doses of this medication when we notice her drinking and peeing more. We're going to monitor her and recheck again on Monday.
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