One Step Back

It appears that the honeymoon of eating and drinking is over for now. At least Hana seems to be settling into a new habit of exploring new foods and textures. She is not quite as enthusiastic about food as she was last week, but it is much, much better than she has been over the last several months. As for drinking, we have not achieved a 400mL + days since Sunday, the day my mom left. Today was as little as 160 mL, but yesterday it was 300 mL. Overall, it is down way too much to even think about doing a wean from her NG tube. Not to mention the fact that her weight is still down.

Thursday we saw the GI doctor and dietitian. Hana was weighed and is still down six to eight ounces from before she got the stomach virus, depending on which scale you go by. We need to get her back on a weight gaining trajectory, even if it is a slow gain. We are going to investigate increasing her total volume of fluid that she gets each day. I was disappointed about this temporary backward slide and was kind of depressed about it for a day but now I’m over it. I have to be, it takes way too much energy to be depressed and disappointed. I really was hoping that now would be the time to get Hana off her tube and eating and drinking on her own. Hana has other plans. Her own personality and spirit is revealed more and more each day, it is such a joy and privilege to witness.

I really believe that she will eat and drink when she is ready. We have had the most success when we spend time out and about. The more time at home, the less she seems to drink or eat. This is not always true, sometimes she will spend an hour in the high chair working on eating a piece of cheese and she will be content to do that three times a day. But Hana really seems to thrive when we get out. So, even though I’m more of a homebody, we need to pack up and get out of the house. We also have had a lot of success with Hana watching other people eat, so we are going to try to eat out more or at least be around others when eating is happening. I’m not wild about the idea of eating out so much or spending so much time going from one activity to another but that seems to be what is called for right now. So, I will pack her snacks and milk and feeds and feeding pump and the diaper bag and we will go out and have as much fun as possible!

This evening we had to do more blood work. They had to stick her three times and move the needle around to get all the blood they needed. It was really challenging to witness (five minutes after that she had to get her flu shot booster too). But Hana really bounces back so quickly, it is really amazing! She inspires me not to dwell on negative experiences. So far, her results have already started to come in – her creatinine is back to her usual baseline (on the high side), her BUN is below her baseline (still much higher than the range for otherwise normal children) these results are related to hydration. Her BNP is at 1100 which is down from the all-time high of 1436 which was the result last time, a few weeks ago. This is kind of a measure of heart failure although results in children are not a very reliable source (normal is below 100).





One thought on “One Step Back

  1. Since you last wrote she seems like she has matured in her face. Very different expressions now. I love what you wrote her Kathleen: She inspires me not to dwell on negative experiences.


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