Weren’t We Just Here?

Isabelle has decided that in spite of all of our efforts, she wants to have her accessory back. Ok, not really but after losing almost all of the weight she has gained we may have to have the NG tube put back in. Frustrating doesn’t come close to describe this experience. Mind boggling, that come close. I have spent most of the weekend in panic mode, some moments more silent than others, and am at a place of surrender. In other words, I am prepared to make the necessary phone calls to get it back in there. Some may be thinking “Of course, what else would you do?” When these setbacks do happen I find myself somewhat paralyzed with the need to control the situation. Let me just try one more time. Perhaps it was her medication, let’s try the Prilosec again with the rice cereal bottles and see what happens. Please let me try one more thing before I have to make that call.

I have learned that you run out of time very quickly with these kids. Each minute that goes by is another calorie lost. She is so small people keep assuming she is a preemie, which bothers me because then I have to go into what she has and get The Look. The Look that says “I am so glad I am not you.” The other negative side effect of discussing her with other people is The Comparisons. The Comparisons are people’s attempts at trying to make you feel better with anecdotes that have nothing in common with the topic at hand. Please don’t compare your healthy child with mine. It’s not the same thing. She won’t catch up like other babies and we have other factors involved. I know you are trying to make us feel better but it’s actually reminding us how different she is and what a struggle we will be having.

25 lbs has been lifted off my shoulders. I try to say these things nicely to people but because I am overtired and running in a higher stress level than normal, it comes out unbelievably wrong. This just sucks right now and no amount of anecdotes will make it any easier for us. Thanks anyway and we appreciate people trying to support us in their own ways but right now my tolerance is at an all time low.

It’s an hour past when she was supposed to eat. She is snoring, and making no efforts to wake up. This is what happens when she isn’t getting the nutrition she needs. I am cutting this short so I can wake her up and get my hopes up that she will take in more than 30 ccs this time. One can only hope!

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