Wednesday, November 29, 2006

My albatross

There are very few things in Bronwyns care that give me consistent worry. I have moments of concern and down right fear but on the whole I manage to be pretty calm. The one exception is her weight gain. As long as she is gaining decent amounts of weight I am fine, but...

This last week she didn't gain anything at all and that is coming off of another week where she had gain but not as much as expected. I keep telling myself that normal babies grow in spurts and have lulls in growth so I should expect the same for Bronwyn. I call in her weight once a week to a dietitian. I always feel like I have to have reasons for bad weight gain.

Many of you are still unclear about what this issue (among others) means for Bronwyn. As one medical student said to me "I'll put this as simply as I can..." (how funny eh?). The big issue is with weight gain is that it shows she is thriving which means that her heart isn't working so hard that she can't pack on a few calories. It takes Bronwyn much more energy to do things than normal babies so she is at risk of burning off too many calories while eating and not being able to store them. The second issue is that the bigger she gets the better. The bigger her body the bigger her little heart will be for the second surgery.

This week we don't have any appointments or bothers for her and she is taking her bottle better than before. So I hope that she will gain well this week.

If there are other parts of her treatment/progress that anyone reading doesn't understand please feel free to ask and I can add any info necessary. I don't always know what to explain and what not too.

2 comments:

Heimdahl said...
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Heimdahl said...

To a small degree I know what you mean in this one facet of your little one's life. For the first 3 months Aidan steadily dropped weight categories and for awhile total body weight as well till he was 5th percentile in weight but 97th in length/height the word thrive came to be this dreaded concept for us.
His issue of course was the cleft palate which is far more minor than your sweet child's struggle but I do remember clearly the confused state of concern and guilt that we felt that we couldn't make our child "thrive".
I am praying for your family and encouraged whenever I get a chance to see how things are progressing for you.
Andrew