Wednesday, May 4, 2011


Sorry it's been so long since I've updated! This will be short, but let me say Grace is doing well! I will post a more detailed update soon, but wanted to make sure to let everyone know she is ok! Grace has been doing very well since her surgery last week. She does not seem to be in as much pain as she was, that silo site was getting pretty sore and red and everytime she coughed or was suctioned it just looked so painful there. So glad she got it repaired. She is doing well with the vent weaning. Her blood gases have been coming back very normal. Everyone comments on how good she is looking! She is still on the Nitric, would love to see that weaned, and yesterday was started on Sildenafil which is actually Viagra to help with the PPHN. She is still on a full dose of Flolan. Ana, (one of her surgeons) says that she thinks Grace will be off the Nitric and the vent before they even begin weaning Flolan and most likely she will stay on Viagra for quite a long time. Please pray that when she has her next ECHO later in the week, it shows dramatic improvent in the PPHN. It has to improve. She has been able to wake up more and has tolerated the noises of the room so we have been able to have her top up and love on her more often. She loves it and so do we. When we kiss her she closes her eyes and smiles. It's very sweet. Thank you for all the prayers and thoughts, please keep them coming!


  1. So glad to hear a positive update on baby Grace! Prayers continue.

    Janna Caravia

  2. Woo Hoo!!! Happy Happy Happy Dance!!!

    xoxo, Aunt 'nette

  3. So glad things are going better!! Hang in there! Still praying for you all!

    Mom to Andrew - CDH/ECMO Survivor

  4. Glad to hear better news. Her journey continues to be very similar to my Camdens. His PHyp. resolved in hospital after they told me that would be his worst problem. Hugs and prayers for your precious gift from God.

  5. Great news! So glad she is doing better!