Runaway coaster

I haven't posted in quite some time, partly because I've been too busy with our newest addition, and partly because I just didn't know what to say. I think everyone assumes that once you bring your baby home from the NICU that life is great and everything is normal. I admit that I was once one of those people....until it happened to me. "Normal" is not a word that I know the definition of anymore. And it's hard to pretend things are okay when they're really not. So after months of thinking about it, I've decided that I'm not going to pretend anymore. As my friend in Manila would say (you know who you are!), "It is what it is."

THIS IS what I'm really feeling:
Having a preemie is like getting on your first big roller coaster ride as a kid...only it turns out to be a runaway coaster. You bought the ticket and jumped into the seat, but something went wrong and now there's no stopping it. You have no other option but to hold on tight and "choose" (because it IS a choice) to white-knuckle your way through the very high highs and extremely low lows, and all of the twists and turns in between. You try to act brave, so that no one knows how terrified you really are. But at times you're so scared and unsure of yourself that you want to just close your eyes--thinking that will make it easier. You know in your head that one day you'll look back and be glad that you conquered such a huge roller coaster. But for now, you just have to find a way to make it through the next big turn!

That's pretty much the way I'm feeling. The hills seem to just get higher and higher for us lately. I feel like we've been through the ringer with our little Whitley. It makes me so sad that she has to go through so much. In a nutshell, Whit has the worst reflux possible. Every baby has some reflux, but Whit is what they call "sick with reflux". This means that is affects EVERYTHING....eating, sleeping, growing, etc. For the first 2 months after bringing her home, Whit screamed in pain for about 22 hours/day. We've been on 6 different meds and supplementing with 3 different formulas to try to get the reflux under control. We've made some progress, but she still is not growing. She's nearly 3 months old and hasn't even gained 2 lbs since we brought her home in November. She is what they call "failing to thrive". Despite all of this, lately she has been a happy and content baby. It makes no sense to us, or to the doctors. They've called her a "mystery baby" and "not a normal preemie". I feel in my heart that there are underlying digestive issues, but I can't seem to get the doctors to listen to me. I ask them questions about why things are happening, and they don't have any answers--but they don't seem to want to do anything to find out either. I'm frustrated that we're in such a small town with no specialist nearby. I feel trapped.

Along with everything else, we also have a speech pathologist nazi (pardon the term, but that's what she is) on our backs. After seeing Whit for one hour, she thinks she knows what's going on with her--when the doctor and I have been working for months to try to get to the bottom of it. She was causing WAY more problems and stress than she was helping. So I told her not to come back anymore. I think that made the doctor angry.

I'm frustrated by a medical community who spouts facts and figures instead of listening to what is really happening and trying to get to the bottom of it. They keeps saying "in most cases...", but my daughter is NOT like most cases--they've already told us that. We've been threatened on more than one occasion with them putting her back in the hospital and giving her a feeding tube. I know for a fact that she IS getting enough milk. There is something else causing all of this. They seem to want to be right more than they want to find out what is really going on. The doctor did admit that he thinks they sent Whitley home from the NICU too early, and I would agree.

I know this is happening for a reason...a reason I may never know in this life. And I know I have to keep holding on for Whit. I just gotta make it around the next big turn.....