I'm not sure why, maybe it's God speaking, but some days I have fantastic ideas that come out of no where. Today I was reflecting on the fact that Hope has been on oxygen forever! Her oxygen levels are remaining consistent and she appears settled where she's at. No one seems to monitor her oxygen levels, unless she sets off the alarms. It seems as though they will leave her on blended oxygen forever. I decided today to try to take her off the oxygen. I brought her from 50% to 40% over a 5 hour period with no change in her oxygen levels. I then told the nurse what I was doing and she felt that as long as Hope could tolerate it, it was clearly fine. Tomorrow I will attempt to go from 40% to 30%. Hope's body is good at telling us what she doesn't like and if it needs the oxygen, her levels will drop and we can put her back up. I wondered today if the oxygen is making her lungs lazy, causing less blood flow to her heart (because of her anatomy) and was a source of our problems, not our solution. We'll see if I'm right and what the doctors say when I bring it up in rounds tomorrow morning.
Hope's nurse today is one of my favourites. She is very loving to Hope and constantly fights people to leave her alone to let her rest, not that she sleeps anyway. She talks to me about a lot of spiritual things and comments on the 'spiritual energy' in Hope's room. It really sunk in that Hope has an impact in the hospital with the staff. She was commenting on the fact that our "community" is keeping us sane and that many parents are loose canons after being in the hospital as long as we have. She may not realize it, but she is witnessing the power of God at work. No mother is strong enough to endure what I have and be sane, I should be on meds and living in a psych ward. This is clearly God working in me and through the many people that are carrying our load with us.
Hope is running a fever once again and the doctors fear that she is brewing another infection. Blood was taken off of her line, as well as her arm today to test for infection. We should find out in the next 48 hours what the results are. She is now back on antibiotics and we feel frustrated with another step backwards. We are up to 13 mls of feed an hour and will be going to 14 mls at 2am tomorrow morning. She doesn't appear to enjoy eating and although I wish we could stop, I know that eventually she will need to endure the pain of the adjustment. Her stomach has not had a full feed in a long time and will take time to learn how to enjoy food once again.
A month ago the very thought of Christmas in the hospital was too much to bear. Today I am sad to think that it won't be a relaxing Christmas full of family time for Sadie at home. Overall I feel like I can handle the holidays in the hospital and that in a years time, it won't matter anyway. I have so much to be thankful for in life and I refuse to allow the building we spend Christmas in to ruin our joy. I'm sure the cafeteria serves turkey on the 25th!!
Life is certainly not perfect and I would change so many things if I had a choice in the matter. But, I am not capable of seeing the bigger picture like God is. Perhaps the things I would change would take away so many of the blessings that come with the heartache. I trust that His ways are greater than my own and will continue to trust in His good and perfect will.