A New Kind of Worry

Tomorrow marks a week from when Isabelle had her Norwood surgery. In less than seven days, she was out if the ICU and onto the inpatient cardiac floor. I don’t know what happened when they moved her crib over but now her oxygen saturation levels are in the high range as well as a rapid breathing rate. I’m told not to worry but how can I not? It’s not good for her to keep going like this and she is sleepy a lot.
There are so many things that one can worry about when you have a sick child. This kind of worry raises the bar on a stress level I would not wish upon my worst enemy. I hate leaving her. I worry about something happening and we are an hour away. I worry about how powerless we are as parents to control what is happening to her. I worry about our other two at home who don’t see us often.
I know there is very little I can control in this world, but this whole experience is teaching me the true meaning of ‘powerlessness’. Seeing your baby cry with no sound coming out because of the breathing tube and you can’t pick her up to comfort her is horrid. Watching her chest rise 100 times a minute regardless of whether you are holding her or not is terrifying.
It reminds me that there are no guarantees, that her amazing recovery can change at any moment. As we waited outside the examination room for her chest X Ray, listening to her cries I wondered is this when the shoe drops? Is this rapid breathing issue going to signify a change? Dr. Emani stressed to us that they are keeping an eye on her and that for now, she still looks good. If he isn’t worried I shouldn’t be, but I am.
I’ve become very attached to our little Belle, and her broken heart fills mine with great love. I hate leaving her and it gets harder every day.
It’s been hard to write lately because if I am not holding her or resting, I’m pumping and that tends to take up a whole day. By the time I get home, I just want to go to bed. I haven’t caught up with many people and am very focused on getting to Children’s, and getting home. The clock is ticking and sooner or later we are going to have to pack up and leave her for another night.
It kills me.

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