Monday, February 28, 2011


Neil and I never know what we are going to get when we walk through these doors. We tend to call every few hours when we aren't here so we have a sense of how Sully is going. This reduces my anxiety, but I still find myself holding my breathe during the walk from the door to his bassinet. Before Sully was born we were clearly and repeated told that he was in a poor prognosis category for CDH. And while he has been very fragile since birth we have seen small improvements. However, when we met with the doctors on Thursday they informed us that Sully's pulmonary hypertension has not improved and that they were not optimistic about him being able to grow out of it, and were unsure if he would be able to be weaned off ventilation or his medication. I felt the hope drain right out of my body and I felt limp right through to the next morning when I just could not get out of bed. Neil pulled me out and we talked about all the improvements in Sul that WE saw. Neil reminded me that the doctors didn't tell us he was dying, they just weren't sure if he was going to live because they hadn't seen a baby so sick survive. If Sully did live they weren't sure if he would have additional health issues due to all his treatment. Since that conversation we have had cuddles with Sully everyday and he has been doing brilliantly. It is impossible to live without hope and I will hope and hope until it is clearly time to let go. I have dug right into the very deepest part of my stubborn nature to walk through these doors everyday and watch, love, and support our baby surprise and delight everyone.


  1. Yes sweet heart....soak up every moment.

    I love you and Sully has the bestest mom in the whole world.

  2. (((hugs))) and love coming your way