Skip to main content

evenings and mornings

Last night was the beginning of our new schedule oriented around Leo.  We drove the five miles under a full moon to meet some dear friends at the hospital to bring Leo his milk.  The night nurse had some speakers set up near his head and was playing music.  This is new thing.  He seems to like it.  He has also been moved to a very quiet area of the NICU and he gets a lot of attention from everyone there. 
For us every evening is sacred, every morning seems clear and quiet especially considering how just five days ago, before he was with us, the silence seemed unbearable.  I imagine it will remain like this for a while unless Leo surprises us.  Mornings and evenings, silence and sadness.  We hope that this unfolding of events in the next week and daily flow will begin a rhythm in our lives oriented around Leo.  The simplicity of everyday is the reminder that we'll do whatever we can right now.  And go with the flow.  
Justin
 

Comments

  1. Janelle thegeekywifeAugust 27, 2010 at 1:59 PM

    Hello,
    Just wanted to say that you and Leo are in my prayers. I found out about him and this blog through Audra's blog. Kyrie Eleison.
    ~Janelle

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...
34 comments
Read more

The Heart Knows

Today during the physical therapist's visit, Leo was put through his paces. She had a whole list of things, 40 to be exact, of regular newborn motor reflexes and characteristics. Each one gets a check-mark (or not) and then a total score once she tallies up all the information that she observed. Although the final score for Leo really itself doesn't matter, the test was more to establish a baseline of development for Leo, and to find his strengths and weaknesses. Once this baseline is established, it will be easier to tell any progression and growth. Just since her last visit, she observed that Leo was doing a much better job of keeping his head in mid-line position. Before he would always keep it on one side or the other. She also determined during the exam that Leo definitely tracked her with his eyes and responded to sound. More specifically, to my voice. She had him on his tummy facing away from us, and she shook a rattle and made some noise to see if he would move his head...
18 comments
Read more

Shunts Away!

Here is just a quick update for all those waiting and praying for our Leo, before we go collapse in bed for the night. Leo was prepped and ready for surgery early this morning, but they only took him around two in the afternoon. We were there with him for most of the day today, just waiting and biting our nails. The anesthesiologist, a very nice British guy, came up around lunch to talk to us about the risks etc in Leo's case. Apparently because of his tucked up little chin, the regular breathing tube could not be used without lots of maneuvering and fiber optic tools. The anesthesiologist decided to use another breathing aid that isn't normally used for babies; a little tube that only goes down into his larynx, and does not do much more then blow some air down. Most of the breathing support would have to come from Leo himself. Typically under anesthesia babies need help to breathe, so the anesthesia team takes over the breathing. However the side effect of that is the newborns...
17 comments
Read more