I haven't seen Grace today, I had to come home with the boys for the night. Today is Day 15 of Miss Grace's life. Day 15 on ECMO. Adam just called me and said that she had an uneventful night and that Grace was awake for the whole time they changed her diaper, messed with her silo, changed her position and did all thier assesments and she didnt raise her blood presure or drop her sats the whole time and didnt grimmace at all and they didnt push anymore morphine while they were doing that. Good things since she can't really remain on Ativan and Morphine forever and will have to cope with things without thier help. He also said that, the surgeons do think she will be able to come off ECMO this week, since her lungs are doing a little and since last week when she crashed, she was able to stay alive with the osscillating ventilator, so if they need to take her from ECMO to the oscillator then on to the regular vent they can. Her ECHO today showed that she does still have some pulmonary hypertension that being on ECMO has not been able to resolve but that they can treat with medication. They are going to keep trying to get her volumes up and they are going to try to clear her lungs a bit more.
Grace is just so amazing, 2 weeks old and she has been through so so much already. Continue to pray for her healing, for her to be comfortable and keep moving forward.
Today I was sitting on the 4 season porch with the boys, and even though it was kind of dark and rainy this morning, there were 2 bunnies just running and playing out back, going between our house and the neighbors and we were watching them. Grace and daddy were missing and I found myself just thinking that I couldn't wait until she could watch the bunnies out of the windows, she will love it I know. I was just sitting there thinking about how everything we've done with the house since we bought it in December, was with the boys and her in mind. How the furniture I was sitting on was bought with spring and summer and watching the boys play out back and how Grace would have somewhere to sit away from the sun and I'd have somewhere to sit comfortably and nurse her and not have to have the boys come inside, and how none of that is going how we had planned. But I didn't even get upset like I would have last week or even 2 days ago because even though I had so many ideas of how our lives were going to be with her and the boys and how awesome things would be, and how great it was going to be to have a sweet little girl and my 3 adventurous boys and all the thoughts of the things we could do, that's not all lost now. Not at all. It's all still here just in a different way. I still have 3 adventurous wonderful boys, I still have a very sweet little girl. Even though I am missing all the awesome moments of having a newborn and Im missing things my boys are doing, I am not MISSING OUT. Things are just amazing in different ways and though I can't expiereince all the things I was looking forward to with a baby and with the boys,I will expierience great things with them all together later. I ordered the book One Thousand Gifts about a month before Grace was due and have been trying to read it since I got it but was so busy that I never read more than the fisrt page. Since Grace is just sleeping alot, I've been able to start reading it and I wonder if I just wasn't supposed to read it before she was born and that's why I never picked it up till she was at Mott. There's a line that I just couldn't move on from. I read it over and over again and keep tyring to remind myself of it.
"It is suffering that has the realest possibility to bear down and deliver grace. And grace that chooses to bear the cross of suffering OVERCOMES that suffering."