One thing after another

Callista has been doing so well over the last week. She's been more awake and alert.  She still wasn't swallowing until yesterday. When I was holding her yesterday I actually heard her swallow twice. We really thought we were making progress. Until today of course, because every time we think we're going forward, we go backward. She had a swallow test today and while she did swallow, they told us her swallows did not align. She did not have any sucking reflex. They said they were not officially done with the study for another two days but their recommendations at this time were to continue OT with occupational therapy and to put in a gastric feeding tube.

I'm so frustrated right now. This is just one more thing to add to our long list of things. I've had it. How am I supposed to keep my sanity in all this? I think things are happening just to piss with me now. How about the fact that we got stuck at the hospital last night because of tornado warnings? Again, one more thing. And I was so frustrated today because the doctor in charge of the study brought up my folic acid intake not once but twice. The first time, I assumed it was just a question. He asked me if I was taking my folic acid before I got pregnant. I informed him I was on prenatal vitamins for years before I became pregnant. Not more than ten minutes later and he asked me again if I was taking ENOUGH folic acid before I got pregnant. Uh, did we not just discuss this? And then randomly after that he continued to go on about how he doesn't usually see spina bifida in children when the mom took her folic acid. Sorry buddy, let me introduce you to all the women I've met online who are in the same position I am. We took our folic acid and it still happened. I was also disappointed because this guy is supposed to be awesome and the only thing we've jumped to is a tube in her stomach.

I want to talk to our neurosurgeon first before we move forward with anything. I do not want her to go through this surgery as a temporary fix and then have to still do the decompression surgery to fix the actual problem. I just have a hard time thinking after how many weeks we had of swallowing just fine and then all the sudden we have no other option? I'd rather hear what neuro has to say.

Another frustration I have right now is that every new person who sees her wants to "diagnose" her with something new. Literally, every time... I've had things brought up about her eyes, her legs, her head movement, and her thumb placement. Seriously guys, we have enough to worry about, lay off. I will say I'm so happy to have been moved from the PICU to the NICU. They know a heck of a lot more about babies. And we've had some pretty great nurses the majority of the time. I do worry though that she's not getting held and cuddled when I'm not there because she is fed through a tube and not by bottle. Which leads me to the fact that the day I have to go back to work is looming so close to me and the thought of it is making me sick. The thought of having to go about my job and be productive and be myself is just sickening to me. I can't do it. I just don't know what to do. I didn't ask to have this happen to me and yet I feel like I'm getting punished in every which way possible.


As a disclaimer to any future SB mommy... These things don't happen to pretty much anyone else... I wouldn't trade my daughter for anything, but damn it's hard. Plus I came home to a cabinet full of little brown bugs last week and Mike died on Desperate Housewives. How much worse can it get?!