It Keeps Getting Harder ...

Around every corner lurks a new problem. Today we found out that Grace had an intracranial bleed. A pretty good sized one from the sounds of it, although we haven't spoken to the neurosurgeons yet. Like so many things that Grace has to deal with, there really isn't much to be done other than watch her and treat her symptomatically. It is strange that it seems like we can do so much in medicine but in reality we can do hardly anything at all. We won't know what the bleed means for Grace in the long term either. We can only hope that she doesn't have significant developmental or physical delays because of this, although with the size of this bleed they are the rule not the exception. Regardless, there is nothing we can do to change anything, just pray that the bleed doesn't get worse. We have so many things to overcome before we can even deal with things like the future. It just seems as if it will never stop.

Her pulmonary status is unchanged. Still very sensitive and tenuous, but nothing out of the ordinary for someone with all her issues. On the bright side, we may be able to feed her in a few days, though we are learning not to count on anything at this point. In fact, all we seem to be able to count on is bad news.

It is still amazing to me how a little wrinkled pink kicking baby can reach into your chest with the tiniest perfect hand I have ever seen and give your heart such a squeeze after only a few days of life. Everytime we get further bad news I feel that little hand will pull my heart right out of my chest. I keep wondering how much she, we can take. Grace seems to be stronger than I am because it's enough to reduce this grown man to tears.