Not My Best Day

I am stressed out! I am tired! I feel beaten down, although there is nothing really to explain why I still feel this way. I am frustrated. I'm not in a bad mood. I'm just mostly worn out and a touch of sad.

This morning I took Morgan to LeBonheur for her second swallow study. After the last study at Baptist, I'd sworn to myself and everyone else in blogland that there was no way I would repeat a swallow study because of how traumatic and exhausting it had been on us. They had strapped Morgan from forehead to toes to a wooden board, layed her flat on her back on a table and proceeded to feed her chalky barium in water while laying down. She was hysterical, I was on the verge myself. While I felt that the actual procedure was done poorly, I was relieved to find that there was really nothing wrong with Morgan's swallowing and I could continue on with what we had been doing.

Today was much different. Today we went to LeBonheur and it was not at all an unpleasant experience. A Speech Pathologist student came out to the waiting room and we talked for a while about Morgan's first test and how I felt about it all. I explained what had happened and how I had felt then. She assured me that the way this hospital conducted these studies was nothing like the Baptist experience. We were taken into a x-ray room where they put Morgan in a foam chair much like a high chair and she had one strap across her lap. She was more facinated with the belt then bothered by it. Much to my chagrin she kept trying to stick the end of it in her mouth to taste the velcro (ewww-germs). We didn't have to wait long on the doctor to come in, he was pleasant. The barium was flavored, apple I think, and Morgan enjoyed the taste of it. We had to pry the bottle from her hands because she liked it so much. The unpleasant part came at the end, when the speech pathologists came out to give us the results. Turns out, Morgan is actually aspirating some of the fluids in trace amounts down her windpipe. She cleared them out on her own and that was a very good thing. Long story short, because I have already answered several calls today and repeated this story over and over, she is now diagnosed with dysphagia and they want us to use a thickener in all her liquids and to thicken her pureed baby foods to a honey consistency.

Why does this bother me? Before I went I had suspected that this is what they would tell me she needed. Am I just tired from the anxiety of going? Am I just exhausted with the idea of adding one more process to a laundry list of parental duties for my two preemies? Am I concerned and depressed because of the long talking to I had with the pathologist about the seriousness and cause of this problem? In short, yes, yes, yes, and yes. The pathologist said that her problems could be caused by the low trunk muscle tone. It could be that her nerves in her throat aren't sensitive enough to trigger the correct swallowing response. It could be that she has CP and this is stemming from that. It could just be that she was so premature and lots of premature babies have this problem. Though the pathologist did say she doesn't see a lot of kids with what Morgan was doing. I honestly think it was the mention of CP that just set me into a tailspin today.

Here is what I am feeling. In the end, whatever is wrong with Morgan (hopefully, prayerfully nothing at all) William and I are so blessed she is here. We love her. We will raise her to be a strong little girl, then a woman, no matter what. We will teach her she is perfect and beautiful and God made her the way she is for a very important reason. Nothing can change my opinion on these things.

However, I still feel complete sadness at the thought that my sweet baby could have any major challenges in life. I know, I know, all kids have their own sets of challenges, and I know things could always be different or worse in many ways. But that doesn't stop me from worrying or feeling sad. I tear up thinking about the possibility of her having any kind of life long problems. If it is CP, will she walk funny? Will she be made fun of by the other kids? Will she feel like she got the short end of the stick because she is different from everyone else? Who knows. I know lots of kids have disabilities. I know that they are miracles and special and there is nothing less about them then the other children, if anything they are more special and beautiful. But I can't imagine any parent, any mother, not feeling deep sadness and that sick in the pit of your stomach feeling at the idea that your baby will have more struggles than the kid down the road.

I just wanted to be closer to the end of these problems stemming from the prematurity. They just turned one and I thought we were catching up, and we are. I know, I know. I just feel like we are on the cusp of dealing with new problems instead of finishing up our worrying over the same old problems. Does that make sense?

I am sick of talking about it. So I guess I will quit. Maybe a good night sleep will help me feel better. Less gray and dreary. I will try to get those dern pictures of the party up tomorrow. I didn't even try today. Didn't really have time. So I will try tomorrow.