The charts don't lie...

Ava had a weight check last night at our family doctor and she has not grown a bit in the last month. Although this did not come as a surprise to me it was very discouraging. Lately I have been looking at other children around her age and wondering if she really is "that" small. I have been starting to feel like she is catching up. She is now in 24 month clothes-a year ago she was still in some 0-3 and is not that much shorter some of the other kids her age. When we saw her lack of weight gain, her doctor brought up the feeding tube again and asked her how I was feeling about it. How am I feeling? Absolutely torn.


On one hand I want her of course to receive all of the nutrition that she needs. In reading about kids that are SGA and those that have RSS, I have seen it mentioned that their bodies are starving because they themselves cannot put enough calories into their body through oral feedings. This breaks my heart. I don't want her body to starve, I want her to thrive and be healthy. I also am so tired of the battle that takes place 90% of the time when she has to eat or drink her bottle. If she could live off of fruit and juice it would be fine but she cannot and she does not want to eat the things that she needs to. Times like this, when she is gagging and saying all done at the supper table, I want to throw my hands in the air and say go ahead, just put it in.


However, thinking of my baby girl with a tube in her makes me want to cry. It makes me feel like we are moving backwards, back to the days of her being connected to IVs etc. Her doctor's appointments have been starting to be farther between and with this new addition, we are sure to be there constantly again. I worry about it pulling out-her doctors assure me this is unlikely but I have heard several people tell me it happens. She is a very feisty little girl who is so sensitive to even her shirt slipping off her shoulder, how is she going to tolerate this? What will her siblings think? How will we get them all to be careful of her? Will I have to constantly be telling Ava that she has to be careful and can't play with the boys because she may get hurt? And what about the risk of infection? People keep bringing this up to me.


The doctor's of course in response to my worries have told me that the risk of infection is manageable. That it is important for her to grow, be healthy, and get the calories by any means necessary-even if it is a tube. That lots of families deal with this and they somehow keep their child away from rough play. That we can manage.


Easy for them to say. They are not the ones that will be doing it. The one that has to do feedings at night. The one that has to see their little girl connected to a machine so she can grow......


In response to my asking if she is "really" that small that we have to do this, the doctor pulled out her growth charts. She explained that while it says Ava is in the first percentile, this is only because the chart does not register percentages below this. That if we look at the line, we can see she is far below. She is not on the charts at all in weight or height to weight. Her height alone, is better than it used to be-but still not on the chart. I swear at one of her doctor's offices it was above the 5th percentile, but her pediatrician said no way. When I told her about the lady in her office last week who asked how old Ava was and then said she is big for her age-she asked if I realize that the woman is obviously crazy. The chart's do not lie, she is definitely teeny tiny.