When she got her NG tube, it was not my choice. I was stressed, I was scared, I was frustrated, I was confused, and I was sad. (and completely grossed out by the fact that one of our roommates during that hospital stay had head lice but that's a story for another day) There's a line from a song that says, "Every new beginning comes from some other beginning's end." Raya getting an NG tube was the end of motherhood as I had previously known it (i.e. being in charge of what, when & how she was fed and being able to handle her care without a herd of medical professionals) and the beginning of something completely unlike any challenge I had ever faced before. Nobody EVER starts a family and plans on life including this:
But for us, it did. It does. In the beginning, I honestly thought we'd have the tube for a couple weeks, maybe a month or two tops. I thought we'd do some tests that would reveal a diagnosis, which would dictate a course of action, and then we'd fix her and be off on our merry way. (*pausing for laughter...*) Clearly, it didn't happen that way. I'm not sure that it EVER works out that way for ANYBODY, or at least not without some bumps in the road between point A and point B.
For some reason, the anniversary of Raya getting a G tube doesn't make me feel the same way that the anniversary of the NG tube does. The NG tube was not our choice. It came seemingly out of nowhere. It wasn't an imminent life-or-death matter, but it was serious and happened quickly. I had no idea it was coming, let alone everything that came after. The G tube, however, WAS our choice. We could have kept going with the NG. I flip flopped back and forth for months about getting a G tube, but ultimately, it did not happen until I was ready for it. That felt like some tiny semblance of control in an out-of-control time in my life.
In the last 4 months I've done a lot of soul searching. Not really because I wanted to, but because things just popped up that made me take a step back and look at everything. The last 3 years have been the roller coaster ride from... yeah. It seems to go in spurts of high maintenance and low maintenance (and I'm actually grateful that we're lucky enough to HAVE phases of low maintenance!). We've had huge setbacks. Moving from a G tube to a GJ tube was a huge setback. Having the vomit continue and new problems came up with the GJ tube was a setback. Eventually we got past it and went back to a G tube, relatively vomit-free. Then she started putting things in her mouth and occasionally swallowing them. Then she started to actually eat things. We cruised along for a while feeling like the worst was behind us and it was all a matter of getting her to eat enough of the right foods so she could get off the tube. We even got to the point of only needing 4 bolus feeds per day that were fed at the maximum pump rate over 25 minutes. Then we moved and she started preschool. A double whammy that her little system just couldn't take. Back on the pump for 8 hours a day instead of 1 hour and 40 minutes. Food allergies took away pretty much all the food she liked. And so on.
When we get to the times where things are going smoothly, I start to feel like I'm creating drama where there really isn't any. I start to feel bad about the fact that I don't push her harder to eat more food. She eats SO well at in-clinic feeding therapy, so why can't we get her to eat more at home? I start to feel bad about the fact that she's not potty trained, and worse about the fact that the thought of trying just makes me want to lay down and take a nap. Am I the problem? Am I holding her back when I should be pushing her forward? Maybe, but I don't think so. We've been so blessed with wonderful friends whose kids are on similar journeys, and when we're doing well and any of them are not, I feel like I'm stressing over nothing and making a big deal out of "problems" that are just a drop in the bucket of what others are dealing with. I get self-conscious about using the term "special needs." I feel like her special needs aren't "special" enough to fall into that category. Especially when I hear so many "Well she looks healthy!" and "If it wasn't for the feeding tube I never would have guessed that there was anything wrong with her." and other well-meaning comments. She's over the worst of it and now she just has a feeding tube. Doubt creeps in, and the more distance there is between now and the crazy vomiting in & out of the hospital phase, the harder it is for me to remember why we are where we are. Sometimes I read through old blog posts and think, did we really do that? Did I really used to have to wash at least 1 load of laundry a day that was primarily vomit laundry, and wake up 4 or 5 times a night for meds & feeds, and on and on... And yes, I did. We did do all of that, it happened, it was real, and looking back on those first days and weeks with the NG tube, I can see now that my initial expectation of a couple of months tops was completely and utterly insurmountable for a little bitty girl whose body just couldn't get things working right. Apparently so was 3 years.
|February 2010, 3 months old|
I don't know what the next 3 years will bring. There are still a lot of unanswered questions. She's having issues right now that she either hasn't had before at all or hasn't had for a long time. I still have a nagging feeling that we haven't turned over the right stone yet and there are still missing puzzle pieces to be discovered (and all sorts of other figures of speech about figuring something out). I've always operated on the assumption that she will, at some point, be off of the feeding tube. I still think she will, but lately I've been entertaining the thought that we may discover that she has some condition that will necessitate some degree of tube feeding long into her childhood, teenage years, and maybe even adulthood. And you know what? I'm okay with that. I hope that's not the case, but if it is, it is. Worse things have happened than someone needing a feeding tube. It's worked pretty well for us these last 3 years.
And that's all I have to say about that. (Now I'm going to go make another attempt at scrubbing the smell of Raya's stomach off of my hands. Unfortunate stomach content spill. Such is the life. :)