Thank you for the continued thoughts and prayers. When it seems that God is silent, He still wants us to seek Him.
Ella had a much better day. Although inconvenient, we decided late yesterday that we would try a slow amount of food over longer periods of time. Basically, we are giving her 35ccs 9 times per day over an hour each time and a continuous feed at night of 235ccs for 8 hours. This means that she is connected to the food pump pretty much all day and night.
This seemed to work for Ella today. She did not retch and did not have episodes where she was uncomfortable due to her feedings. She was behaving more like herself – – smiles and all. Praise God that something worked! In this way, it definitely seems that it is not the food itself causing discomfort but a volume issue.
Keep in mind that this behavior concerning food still seems strange for Ella. I think all of this would make more sense if Ella was just gaining a tolerance for food. Yet, she worked all the way up to bolus feeds in the NICU and was fine when we left on January 25, 2008. Even prior to bolus feeds which she conquered in mid-January, she was taking 60ccs over an hour during the day. Yet, it doesn’t even seem that she can do that anymore. So, it seems we are progressing backwards and doesn’t make sense based on the progression of events.
This is part of what makes it more of a mystery. Many CDH babies have trouble with feedings. But it seems strange that 2 weeks ago, she was fine with bolus feeds and now she isn’t.
Another thought concerning Ella’s intolerance of food this past week was the density of the food. We started with 20 calorie Alimentum and used that for 3 days. Starting today, we used 24 calorie Alimentum formula and will do that for another day. From there, we will slowly add calories with polycose powder, so we can achieve our goal of 28 calorie formula.
We are enjoying the mechanics of the Mic-key g-tube, but think that Ella may have a size that is too big. When we see Dr. Kays on Tuesday, we will be asking him to take a look and possibly consider a smaller size (it projects off her too much).
After listening to Dr. Charles Stanley this morning, I was reminded that when God is silent we are always worried that He is absent. Yet, we have His promise that He is never absent from us. That silence, is a reminder that we long for Him, that we hunger for Him, that we thirst for Him.
God knows what is on our hearts. He just wants us to pour ourselves out before Him. Please join us as we seek and cry out to the Lord for Him to reveal wisdom to solve Ella’s mysteries.
Psalm 102:1-2
Hear my prayer, O LORD;
let my cry for help come to you.
Do not hide your face from me
when I am in distress.
Turn your ear to me;
when I call, answer me quickly.
