Neverending

Grace had a very good night, she tolerated being moved around and messed with quite well. She was awake on MOnday from about 6 pm until 11 pm. Her blood pressure rose a few times but not too high and mostly because her neighbors were crying. Grace doesn't care for apartment living. She was trying so hard to stay awake, fighting sleep just like a healthy baby would be. Both of her eyes were so wide open and she was trying so hard to smile at me. She got a few half smiles out. She seems to be alot more comfortable and happy than she has been. Her road is still quite long and hard though.
Grace has two chest tubes, one was placed when she went down for her initial repair surgery when she was 2 days old. That one has mostly stopped draining. She also had one placed on her right side about 2 weeks ago or so which is still draining a significant amount. Her dr's now suspect that perhaps it is a chylothorax, meaning her lymphatic fluids may be leaking into her lungs. They sent a sample of the chest tube fluid to see and we should know it it is that or just alot of fluid still coming from that side. If it is chylous then they will decide whether or not they need to go in and clear it out or if thye can just treat it with another IV medication. When it comes time for her to finally be on feeds, they will probably give her a special formula. I don't know if that means always or just for a time. As each day goes on, it becomes more and more clear to me that I most likely won't nurse this baby and it breaks my heart but as long as she's here I guess it doesnt really matter in the big picture.
Grace is also scheduled to go to the OR on Friday to finally put her intestines back in and they will put a gortex patch in to close her. So she will not have a silo anymore but instead will have a patch on her stomach. It will not be skin colored. She has to have this because, when they did her repair before they didn't want to squeeze everything in and then have her swell up alot on ECMO and have issues. So they left a little of her intestines in a silo. they had planned on cinching it down a little each day until it was all the way in and then close her up. Well she started having so many other issues taht her silo became the least of her worries. Since her skin has been stretched open for a month and the silo popped out numerous times and had to be sutured back in, they just don't think he skin will be able to stretch enough to close.
I was so happy when they were able to do her repair without a patch because it can cause all sorts of problems later on down the road. This gortex pactch will come with the same problems and that's upsetting to me.
Overall she is doing alot better than a week ago and considering all the things she has been through she is doing very well.
Please pray that her pulmonary hypertension can be brought under control. She is on Flolan for it, and they have just upped her limit on that, she should reach her limit by Thursday and they will repeat her ECHO(echocardiogram) then, please pray it shows improvement. Right now she does have a very strong healthy heart but that could change if her pphn does not improve.
Pray that her repair goes smoothly. I hate sending her to the OR.
Pray that she does not have a chylothorax, though it can be fixed it just adds more time and steps to getting her home. 
Thank you all so much for your thoughts and prayers, they are very much appreciated even if they are not immediately (or at all) responded to.