Nothing much to update today, Elizabeth is still in PICU on high flow oxygen and nitric oxide. Tomorrow (or today I guess) will be a big decision making day for us ~ where do we go~. I sometimes feel like all of this is not real, how is it that someone so little has to suffer and struggle so much. When Elizabeth was born I remember thinking ok, shes gonna be in NICU for a few days and then be just fine. But those few days turned into a month. And then I thought ok she just needs oxygen for a few weeks and she will be ok. I dont think the severity of her illness hit me until she was on the ventilator in March and I realized there was a good chance that things may never be "normal" for Elizabeth. It seems like every month since then we have something new or worse to deal with, I try hard to find a "good" thing or progress made each day to give me hope, but sometimes thats hard to do. I hate not being able to make things better for her.
Some of the choices we have had to make and will continue to need to make scare me but knowing that we could make the wrong choice scares me even more. I hate knowing that other families have to struggle with these same choices daily and it makes me so sad knowing that other kids are going through the same and even worse situations than Elizabeth.
I am starting to realize that all we can do is try our best to make the most of the resources we have and learn as much as we can to provide her with the best care and best life possible.
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