Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

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Monday, December 20, 2010

Day 2 Intermediate ICU

We are still in the Intermediate ICU; we had a chest x-ray this morning and they determined we could remove the chest tube.  The team came shortly after and pulled it out.  It didn't seem to bother him much, so it wasn't too big of a deal for him.  They also repeated the echo this morning and they determined that the gradient on his Pulmonary Artery is right around 30mmHg.  We started at around 22mmHg, so there is a little improvement, but not the kind of restriction that would really force his left ventricle to pump hard and train it to take over the systemic function down the road.  We are waiting for Dr. Hanley to look at the information and make a recomendation.  We are looking at two probable choices: 1: re-band before we leave, or 2: leave and allow Nicholas to grow into the band.  This makes me feel really, really emotional.

Nicholas had a good day today.  He got to go on a WALK!  He looked like he wanted to run and jump, but thankfully we had a good hold of him and he didn't topple over or anything!  He had a few exciting visitors today, too.  Some firefighters came this morning and were handing out toys. Nicholas got a new fire truck that makes siren noises!

We also got to go to the "Forever Young Zone" and Nicholas got to meet two players from the San Francisco 49'ers! Nicholas received a Build-a-Bear from #40 Chris Maragos and he got his picture taken with #66 Eric Heitmann.  What a neat thing for these guys to do!  I think I saw a news camera from NBC, so it wouldn't surprise me if Nic is on the news tonight!

I can only hope that Dr. Hanley will know EXACTLY what we should do.  This is an emotional roller coaster and I want to get off!!!

1 comment:

  1. Bren,
    It is so nice to see a smile on Nic's face. Tell him that his Auntie Ny loves and misses him!
    Love, Ny

    ReplyDelete