Ella had a pretty good day. She was in a great mood unless she was working on feeding. At those moments, she had meltdowns.
When she has a meltdown, we have to increase the oxygen rapidly these days. The great news is that she has been requiring less oxygen since her procedure last week. During the day when she is awake, she is requiring 750ccs and at night, she has been on 500ccs. We’re hopeful that this is a good sign for Ella and that we will slowly be able to wean her oxygen requirements even sooner than anticipated over the coming weeks and months.
She was sporting one of her dresses because it was 70 degrees in Denver today. Yesterday was 65 degrees, today was 70, tomorrow should be 70 and Wednesday’s forecast is for 65 degrees. Even just these brief breaks in the winter weather help and make us anxious for the warmer weather. We’re excited to get back outside with the Bun!
Ella has shown weight loss the past few days. This is a bit surprising. We expected a bit of a dip right after the procedure since she didn’t have food for several hours. However, we also increased her food volume to 920ccs, an incremental increase of 100ccs, from where she was a week ago. We did the increase in fluid because she had started to lose weight even last week prior to the procedure. But normally adjusting the fluid by that much would start to show some gain after 5 full days. She is now at 9.2 kilos (20.2 pounds). We’ve emailed her pulmonologist to get his thoughts. Our initial instinct is that maybe the diuretics are contributing to the weight loss. Normally, she requires a good amount to keep her pulmonary status in-check, but it could be that the amount of diuretics is too much now. We’re hopeful that is the reason, as we would love to wean the diuretics. Since the procedure, Ella’s body is responding to things in a different way so we’re trying to pay attention to see what adjustments might need to be made as the days and weeks pass.
We’re just so thankful for our beautiful baby girl. We thank Him for allowing us to be her parents.
Psalm 25:10 (NIV)
All the ways of the LORD are loving and faithful
for those who keep the demands of his covenant.
