Customer Reviews

Tuesday, May 31, 2011

January 2008: Our Last Day Of Hope

today was a good day.  every single doctor, nurse, and fellow NICU parent that we have talked to have all said the same thing:  the NICU is a roller coaster.  there are good days and there are bad days.  one doctor said that even though there are bad days, you always want to keep seeing progress and slowly but steadily climb up and out of this pit. 

so far, Charlie has only had a couple good days.  every other day has either been bad or on the verge of bad.  we are not progressing.  for every step we take forward we take two steps back.  we still have no answers.  no prognosis.  no reason.

today the sun was out.  a rare thing these days.  it was a beautiful day.  cold, but not as cold as it has been.  jay and i had a nice walk over to the NICU from RMH.  we got there and started our routine.  sit with Charlie.  we listened to the morning rounds.  we talked with the nurse.  we went to lunch in the cafeteria.  then we sat with him all afternoon.  just watching him.  jay has two tasks that he has taken on and loves every second of.  his first is to brush Charlie's hair.  i don't know why he likes this so much, but every time he comes in to see him, it's the first thing he does.  he gets out Charlie's little brush and combs his hair.  his second task is to read books to him.  he doesn't read as much as he just shows Charlie the pictures.  he loves to do this.  i think it makes him feel like he is teaching him something. 

then we  stayed for the evening rounds.  Charlie has done so well today.  he has had a few "de-sats", but nothing too major.  i don't think they even had to air-bag him at all today.  he was taking more breaths on his own.  we didn't leave the hospital until about 9:00 at night.  as we were standing outside waiting for the shuttle to take us back to RMH, jay was looking at me.  i said "what?".  and he said, "nothing.  i think Charlie is going to be okay".  i smiled and said, "so do i". 

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