Instability

The funeral was beautiful and the support was overwhelming.  We both want to thank everyone for blessing us with meals, words of support, visits, hugs and attendance at Ashley's funeral.  We were glad that we chose some of Ashley's respite providers to be her pall bearers.  It was very fitting. 

Presently, we are finding ourselves focused on Hope.  She is just not getting better.  The day of the funeral, she didn't throw up because we decreased her feeding rate in half (we were worried that sitting up might be too much for her, so minimal amounts in her stomach would be better).  But during the funeral, her breathing was very laboured and irregular.  Yesterday, she perked up and we had some lovely smiles and wonderful cuddles. 

Today, we woke up to find that Hope had a very high fever.  The tylenol brought it down, but her breathing has been laboured and irregular at times.  For a few hours today, her lips were very pale and the veins around her mouth were very blue...just like Ashley before she died.  But now her lips are pink and she's breathing a bit better.

Dr. Harlos, from the Pediatric Palliative Care Team came by and listened to Hope's chest.  He made me feel better when he found that Hope's chest didn't sound as bad as Ashley's did, last week.  Hope is still having wet diapers too.  So, I'm hoping that we have a couple more weeks with her.

If you were to ask me how we are doing, I would be hesitant to say because we are still in a rather intense state of watching and waiting.  I doubt that we've processed anything at all, and it's hard to believe that Ashley is gone.  I just hope that we have a few more months with Hopey.