We are feeling very frustrated with Hope's feeding progress. This seems to be one of the major things that keeps us in hospital. After switching Hope to bolus feeds (large volume in less time) she had to be switched back to continuous feeds because of intolerance. We have been stuck at 10mls an hour forever! Today I asked if they could try adding more volume to see how Hope would tolerate it. She is now at 11mls and has not yet thrown up. Please pray that she continues to tolerate her feeds so we can get her off the liquid nutrients, pull out the PICC line and bring her home. We are waiting, but are losing our patience as each day passes.
Today they were able to take Hope down a little bit on her oxygen. She still has a long way to go, but any progress is worth celebrating at this point. If Hope was off oxygen, we could move her around the room more, take her out for walks around the hospital and would be one step closer to home. Please pray that she would be breathing without assistance soon.
Along with the ups and downs in this journey, comes anticipation and disappointment. I usually have some goal in mind of when Hope will be to her next stage. Whether that is a surgery, a trip home or a step forward in her medical care. Right now I feel completely numb and void of any anticipation. I struggle to see how we can get Hope home in the next few months as we seem to make such minimal progress. I think I am protecting myself from disappointment and assuming she'll be in the hospital for months. Secretly, I hope we can be home before the New Year, but will simply not allow myself to believe that's even possible. I think the optimistic version of myself is happier and I long to feel like Hope will be home soon. Please pray that she starts making more positive progress and that Shawn and I will be encouraged and see some glimpse of an opportunity to have her at home with us again.
I know that God is using Hope at the hospital. The nurses adore her and we have built friendships with many of our nurses. We have been truly blessed by the care we receive from the staff and feel confident in their ability to treat Hope. The staff work tirelessly to treat Hope, but also to make our family more comfortable. I hate to wish our time with them away, but I am dying to bring Hope home. I just hope that whatever impact God has planned for Hope to make in the hospital, that it happens in the next few weeks and isn't a long project! All I want for Christmas is Hope in our home with Sadie.