Hope is back on antibiotics and appears to have another infection, likely in her PICC line once again. We're getting sick of this and ready for the line to be replaced or no longer needed. This has been a week of frustrations and as they rise, we fight harder. This can sometimes be a good thing as we get more aggressive with the doctors to get things done for Hope. It sounds like we'll be having a meeting with GI and Cardiology this week to discuss Hope and what is next for her.
Hope continues to retch and throws up often. She is also having continual diarrhea and we are going through 10 or more sleepers per day and the laundry seems to never end now. Hope is smiling less and clearly not feeling well, the fever is likely to blame. We need our little girl to light up again, it gives us strength when we see her smile.
We continue to push forward with Hope's feeds in order to get her off the liquid nutrients. It's not easy on her, but she's a tough little girl. It's hard to believe she's already 9 months old. Please pray that she will be able to handle getting to her full feeds.
Thank you to everyone that has encouraged us this week. It's been really difficult and we would not be able to carry on without the support of those around us. Today I stood in the hallway of the hospital and hugged another patient's mother. She is all alone, after having a child in the hospital for 18 months and those around her getting tired. We really appreciate everyone that continues to stand with us, we know this journey is long.