Holding Steady

I got here this morning and things are still going well with our Gracie Girl. She has continued to come down on all the medications that they want her to come down on. They will proabably not come down on any more until her chest is closed. Dr. K came in this morning and said that they will clean her chest out today and possibly close her chest! Aaaaaahhhh. But he will have to see how she looks when they get in there. I have heard that it can be common for them to close her chest and have her not do well and have to open them back up. That happened to our little friend here, Teagan, then they closed him again a few days later and he did well. She still seems to be quite swollen though, so we will see. They have a couple of procedures to do in the Operating Room so they will either try and fit her in in between procedures or they will do it later this afternoon when they are done.

We have been spoiled all this time to have a corner room and to be able to sit outside the room in these two chairs in the corner, which has given us some privacy to talk, blog etc. When I got here this morning, some tech moved our chairs into Gracie's room and moved a cart to the spot we used to sit saying that it was a fire hazard. Quite the bummer because it is not the same at all to sit in that room with the nurses and have everyone hear all your conversations. That has actually been one of the hardest things to deal with-----NO PRIVACY. You are constantly around strangers and I have never been able to be alone with my baby. So when we had those really hard days, there were always two nurses watching everything you did and said to your baby. But, we'll take it if all of this will get her well and out of the hospital!! They have really given her excellent care and I have never once thought they didn't know what they were doing. Quite the opposite, I am amazed how smart everybody is around here.

I will post later when we have the procedure done and see how it goes!! Our Gracie continues to defy the odds and is truly a miracle. When I called the night nurse last night she said how excited she was that Gracie was doing well. I asked her if she had ever seen a heart baby her age come off ECMO after 11 days and she said NO, not ever at Primary Childrens. So, even though the nurses don't use the term 'miracle'. I will. Gracie is a 'miracle', thanks to everyone's fasting and prayer. Thanks again for all of your concern, I will post later!