Well, the BPD visit did not go how I had expected or how I had hoped. Kathryn is definitely impressing the BPD team with her alertness and her over appearance and attitude, but not with her numbers. Her weight today was 9 pounds, 6 ounces. Overall, still a weight gain, but not as much as they would have liked. She was gaining before at an average of 28 - 30 grams a day which is close to an ounce a day. This time she has slowed to about 18 -20 grams a day about 2/3 or so what she was gaining before. In the last two weeks, she has only gained 4 ounces. This was definitely disappointing news because she looks like she is gaining better than what she is! Also disappointing because I was hoping that they would consider changing her formula and maybe discontinuing the MCT Oil. Well, they changed her formula, but they are now making it more calories, plus adding 1 ml of MCT Oil to her rice cereal and also increasing her feeds to 1/2 ounce more per bottle.
The only medicine change was to increase her Diuril (a diuretic). Apparently she had outgrown her dosage. I was also disappointed by this because I thought she was eventually supposed to outgrow her dosage, so I didn't quite understand why they increased the dosage.
The oxygen is also going to stay the same for right now. I asked about weening to 1 1/2 liters after seeing how well she did on that level on an oxygen tank, but Dr. Lozano said that this is just the difference between a tank and a concentrator and that he doesn't want to ween yet. He says he wants her to be more stable for a little while longer before he makes any changes.
I guess its a good sign that he doesn't want to follow up in 4 weeks again, we got pushed back to 8 weeks. So, that's an accomplishment, but I guess I had hoped for bigger changes!! I know it will come with time, but I am ready for it!! So we have a specific prayer for the next two months - BIG weight gains and continued stability!!!!!
On a light note, Kathryn had her blood drawn today for a hematocrit level and a test of her electrolytes since she is on diuretics and she did not even cry when she they put the butterfly needle in to draw the bloodwork. What a champ!! Now if mom could just get past her petty disappointments!! Thanks for letting me vent. I think we all want our children to excel and be healthy!! I want that quite a lot and I guess I need to realize that it will happen with time and it may not necessarily happen when I want it to!! God is in control and has placed his hand on Kathryn thus far and I know that he will continue to do so!! I need to pray for patience for myself!