click your heels three times

They tell us tomorrow is the day–we are going home!  On our nightly trip home, we took everything we could so that John can just walk back here tomorrow after he takes Mukwa for her morning walk. If the weather cooperates, we are going to take Sophia home in the Baby Bjorn.  Our nurse tells us that is a first (we figure no sense tormenting Sophie in the car seat before we have to).  She’s adjusting to the new meds well–her oxygen levels are back up, and she’s eating okay.  So unless she decides that she really doesn’t want to leave here and live with this crazy couple that keeps staring at her and trying to get her to eat yucky stuff, we’ll be home tomorrow–”check out” is at 11:00.  We’ve practiced drawing up her meds without air bubbles into the syringes; developed a schedule to administer them; declined the Spanish/Hmong versions of the shaken baby video; had her discharge exam; taken infant CPR;  and made several doctor appointments.


In preparation for going home, she was allowed to remove all cords this afternoon–no more monitors!  It is such a wonderful feeling to be able to walk around holding her and to lay her on the big bed with us.  John might be a little too excited–I’m not sure that she is quite ready for airplane rides.  We are also excited for Mukwa and Sophia to finally meet (Mukwa has had a lonely week without anyone to cuddle at night).  We’re not sure how we’ll be able to introduce them and take pictures at the same time–but we hope to capture it for the blog somehow.  


I had a moment of panic this afternoon realizing that we are now solely responsible for our “heart baby” as they call her here.  There is no longer a monitor to tell us if something is wrong–and the nurses and doctors keep telling us that “we’ll know” if something is wrong– but it is scary to be the ones responsible.    


We have felt so lucky that we were both able to spend so much time with her while she was here–many parents are unable to be here for various reasons–jobs, other kids, distance, etc.  We have also felt incredibly blessed to have little Sophie in our lives.  A senior resident who has been particularly kind and attentive to Sophia stopped in to talk with us last night and shared that he had just recently lost a niece to miscarriage at about 35 weeks.  She had also been diagnosed with Down Syndrome.  He told us how much being able to work with Sophia has meant to him since he was able to see his niece in her.  We had no idea why he was paying special attention to Sophia.  It really makes you stop to think that you really don’t know what the people you encounter everyday are dealing with.  It reminded me of a family we met in Sophia’s nursery in the PICU that had to make the decision to shut off the machines that were keeping their daughter alive. The doctors had asked us to leave the room so that the family could say goodbye. When we came back the bay where she had been was empty. When we left that night we happened to walk by the room where they had moved them and saw the mother and father sitting together with their child, rocking their baby for the last time.  It is the saddest thing I’ve ever seen and I don’t think I will ever be able to get that picture out of my head.  It serves as a constant reminder to treasure all of the moments we do have together and to be grateful for how lucky we truly are.


Well, Sophie just finished off 3 ounces and is tucked into bed.  She’s become too fidgety for blankets, so she’s wearing her sleep sack, with blankets tucked around so she doesn’t slide down the incline of her bed.  I hope she can sleep without the beeping of her monitors tonight.