Thursday, June 18, 2009

One step forward, two steps back...

So yesterday Miss Sunshine had an appointment with the audiologist. Since cleft babies are prone to ear infections and potential hearing loss, we have to have additional hearing screenings for her. We went into the appointment expecting everything to come out fine. She passed her initial hearing screen in the hospital with no problems. She's been reacting to sound, turning toward us when we call her name, mimicking sounds we make to her, etc, so we were confident she could hear. But when they tested her, that is not the result she got. She failed in both ears. So then they tested for fluid and she has fluid in both ears. They looked to see if her ears were inflamed and said they saw no signs of infections, so we have to go back in a month to see if she can pass then. They said if she failed again we would need to see an ENT. Well, I decided to be proactive on this. I was concerned about the fluid in her ears, so I went ahead and called her regular doctor, even though they said they saw no signs of infection. I wanted to make sure he didn't want to see her, just in case. Her doctor decided he didn't want to wait a month to see the ENT and risk any hearing loss, so they are setting us up with an appointment for the ENT, hopefully early next week. I am so glad he decided to do that.

For some reason, her failing that hearing test yesterday really hit me hard. I think mainly because I was not expecting her to fail. Even though they said that the fluid in her ears is likely the reason she failed, it has made me face the reality that she could potentially have some type of hearing loss. And that just makes me sad. We already knew there was about a 95% chance she would have to have tubes put in during her repair surgery, if not before. I was just hoping that maybe we would be the lucky ones who didn't have to do that. But now it appears that she is having fluid in her ears with no discernable cause, so she may have to have the tubes even earlier. I just don't know what to think. I wish there was some magic wand I could wave to avoid all of this. I know in perspective that really we don't have it bad at all - her birth defect is fixable, and there won't even be a visible scar from it. The majority of what she will go through with it she will not even remember. But it's just the thought of everything she is going to endure while she is so little that just makes my heart ache. And I can't help but blame myself. What did I do wrong to cause this? I know in my head that there is nothing that I have done, but that doesn't make your heart stop asking that question. I just try to take it day by day now. She is gaining weight finally, and I am still keeping up with her with the pumping. I really hope to make it the full first year with no formula, but I feel if I make it at least to six months then that will be a minor triumph. So I keep trudging along. She has developed quite the demanding personality and I can only hope it's something she will grow out of. One child with attitude is more than enough, and Britton certainly has his fair share as well.

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