Monday, June 20, 2011

Each day, a little better.

Since my last post on Thursday, Grace has continued on the right path. Guess we'll start with Friday! On Friday they continued weaning her drips and and she didn't seem to notice much! She was fussy and wanted to be held but as long as you were holding her she was fine! They went up to 24 calorie breastmilk which decreased the amount she got, but now the amount is back up today because her weight is higher now.
Grace was also started on a new med for her PPHN to try to replace the Flolan with an oral med since Flolan is through her Broviac. Which we could take her home on, but I for one would really rather not! Not so thrilled about some of the side effects and possible risks of this new one, but I suppose it is one step at a time and we will take it as it comes.
On Saturday it was much of the same, just Grace steadily moving along, I wasn't there but Adam said she was doing good and was awake for a bit and calm! Sunday was Father's Day and we went to breakfast and Daddy got a trip to Lowes and then I went to visit the Princess. She was in a swing when I got there, fussing but her nurse (one of our primaries,, who we love!) said that she HAD been happy in it! She got her diaper changed and got Grace swaddled, she LOVES to be swaddled and then we got some cuddles in. On Sunday I noticed that she was able to get upset and not drop her sats right away and come up fairly quickly when she settled down. Sometimes without having her flow or O's turned up. Very good things!
Today Grace got off of her Fentanyl! Woohoo! Her Dex is close to off and her Versed isn't too far off! Then we just need to wean Methadone and she is drug free! So glad she is moving along with it.
A few things of concern, are her PICC line, she kicks so much and moves around so much that she causes it to bleed alot, and now she has worked a stitch loose, please pray it does not come out.
Please pray that she does not run into liver damage due to her new med.
Pray that she can keep her sats up while crying and stop needing the high flow.
Pray for her stomach to begin working, I'd love for her to be able to feed by mouth!
She is doing so so great, especially for where she was. She is just an amazing little lady and I am so so glad she is mine! Oh how could I forget, when she is sleeping she smiles in her sleep. Not while she's awake yet but alot in her sleep. She is absolutely gorgeous. Her cry is getitng stronger as well. She's doing so well!


  1. You and grace are both doing amazingly! One day at a time and soon she will be healthy and at home with you. Grace and your family are in my prayers always.

  2. praise god his power is amazing so happy to read how wonderfull she is doing hoping to get up to visit soon I LOVE U all so much i will stay praying

  3. I'm so glad to hear that her sedation weaning is continuing to go well!! That was such a hard thing to watch. Sounds like you're moving really quickly with it. We are following your blog all the time, thinking of Grace constantly and always praying for you all. Can't wait for the day that you get to break out of there! It's coming. Hang in there.

    Chrissy (Clara's mom)

  4. SO SO SO glad to here she is doing better!! I know you are busy, but pictures when ya can! ;oP (((hugs and prayers)))

  5. Still continuing to pray, glad she is doing well!