Sunday, July 24, 2011

17 weeks

They went down on Grace's flow today, back down to 2 liters on a blender with the Nitric still at 20. Sildenafil  has been being given for over 24 hours now, such a low dose but so far so good. I dont know when they are going to get an ECHO I don;'t know when they are going to wean Nitric.Grace has been ok. We napped together for a bit today, one of the sweetest things about having a baby is falling asleep with him/her on your chest, I'm glad that's one thing we didn't completely miss out on with her.
she likes having kisses on her cheeks and chin, she sort of smiles for it. I might take a purposeful blogging break, to be honest my hearts not really in it right now. day to day  nothihng really changes, pphn stays the same, stomach stays the same, her mood stays the same her reflux stays the same. Im sort of quite discouraged by the lack of progress lately, and just feel like taking a break, so I suppose no news can be considered good news or exactly the same news. if anything astronomical happens, I'll come back.


  1. I remember Chrissy's need for "blog breaks." Know that I will not be taking a break in my prayers for you and Grace. I know this seems impossibly long and hard. I will be praying for your strength and for Grace's healing. Blessings to you all...

  2. Miranda - I think about you, Grace, and your family constantly. Please know that you are being continuously lifted in prayer. There is nothing more frustrating than a standstill in progress. Sometime the nicu can seem like a horrible remake of the movie Groundhog Day. If you ever want to talk, please don't hesitate, no matter the time. 260-637-7109
    Carrie and Noah

  3. I am always praying for baby Grace & your family. I hope that things will look up for her soon.

  4. Hang in there Miranda. I know it feels like it's one step forward and two steps back but she will get there. Don't give up hope. We're praying for you, your family, and especially Miss Grace. Please let me know if there's anything you need, even if it's just to talk. I sincerely mean it.

    Danika, Tim, and Baby Levi

  5. I can totally understand your need for a break. I will continue to keep your family in my thoughts and prayers.

    Don't give up hope. Grace is truly an amazing fighter and an inspiration to everyone who knows her story.

    Hang in there - please don't hesitate to contact me if you need to talk.

    Mom to Andrew - CDH/ECMO survivor