Ella had a great day.
She took a bath and got all cleaned up to see one of her favorite people, Dr. Kays. The best news: The Bun gained weight. She gained about 140 grams over the past week, bringing her weight to 11 lbs, 9 ounces. Dr. Kays wants her to gain weight at a rate of 15-30 grams per day. Most babies will gain 30 grams per day, but as low as 15 is acceptable for CDH babies. Since Ella averaged 20 grams per day, that pleased him.
He did want to discuss the strategy for further weight gain over the next couple of weeks. He asked what we thought she would tolerate the best: a volume increase, further calorie density, etc. After some discussion, we leaned towards making a change in the overnight feeding when she is asleep. The likelihood that she would notice any difference is minimal. He is checking with the nutritionist and will be contacting us, but we will likely add some oil to her feed at night. Even just 1 tablespoon of oil to her food each night would give her an enormous boost in calories which should result in weight gain.
We did find out about her labs from last week. Interestingly enough, her BUN was 28. It jumped a tremendous amount from the prior labs. Now, it is in a place where she could get too dry. So, he asked us to get labs before we left the building today, since we will not be seeing him for 2 weeks. Since she is on such a high amount of diuretics, her electrolytes do need to be monitored closely. If she is too dry, he may make an adjustment to her diuretics.
When we went to the blood lab, they had a tough time drawing blood from Ella’s veins. This could be another indication that she may be too dry. Hopefully, they drew enough to test her electrolytes, so that Dr. Kays can do his analysis. It would not be fun to have to make a special trip just for that purpose.
Ella did have granulation tissue around her g-tube again this week. The only thing you can do is keep it clean and dry. We do our best at that by keeping gauze around it. It is frustrating that it continues to return each week. I’m hoping it will decrease over time, but have accepted the fact that it may remain until she no longer has a g-tube.
Dr. Kays always tries to give Ella the benefit of the doubt while checking her saturations. I think he is secretly hoping that he will be able to wean her oxygen. Unfortunately, she only gave him a 94 while he was checking. That is definitely not good enough to even consider weaning. But slow steps downward will eventually be another milestone for Ella.
All in all, a great day for Ella. We thank the Lord for our precious baby girl.
