Everyday is a different, some days are better than others. We look at the bright side as a family! Nevaeh is waiting for a donor, and that is a hard mind set to put ourselves in. Knowing that she can’t live with her own heart hurts so much. Seeing her daily struggles is hard to see as her mother and father. We have had parents tell us that “she looks great!”, she does look like her beautiful self just hard to see her like this and know what she has been through just to stay alive. Today is struggle is high heart rate, fever, and bloody stool. The reason for these things is still unknown, we are still running labs and cultures to find out. The LVAD (left ventricle assist device) is what is pumping the left side of her heart because it is to weak to pump it self. There are two tubes coming out of her chest from that are inserted into her lower left side of her heart that pumps the blood into where a motor sits, and back into the top left side of her heart to pump it out to her body. Everyday that she has the LVAD she is at risk of forming clots, because blood tends to stick to the tubing, so she has to be on blood thinners to help with the clotting. Also the LVAD specialist are talking about cleaning out the clot that has formed over night. It is a steril procedure, so no one is allowed in her room at that time. The procedure itself takes less than a minute, they have to be quick because in that time her heart is pumping by itself. Her cardiologist has told us that the procedure itself with risk is less than 1%. She has had the procedure done 4 times. We have been ready sense she got here to take our baby home. That day cannot come soon enough.