Isabel is doing much better today than she was over the weekend. The negative effects of the immunizations have almost worn off and she is seeming more like her old self. Some of her BP readings are in the desirable range and all of them are lower than they had been. It seems the medication may be starting to work! She is also doing better with the bottle.
Greg and I have been very concerned about Isabel during her feeds. You may remember us mentioning her having bradys (low heart rate) and decreased oxygen saturation. She would turn blue in these situations. It has been very frustrating because it doesn't seem that the physicians understand what we are talking about. Greg and I are sure we don't want to have to do CPR when we get her home. A nurse over the weekend experienced this during a feed and had to give her oxygen. After talking with her, we were able to use her as a voice to the medical director. In addition, Greg spoke with the medical director who was unaware of these problems. It is finally being addressed. They think the reflux is causing her to block her airway (good choice!) and then she ends up turning blue. The plan is to fortify her milk with an elemental formula. This will allow us to increase her calories while decreasing the volume, thus helping her gain weight and help with the reflux. An elemental formula will be easier on her tummy because it is not made with cow's protein.
Let's hope this works. The poor baby has only gained 2 oz in the past 2 weeks for various reasons.
Please continue to keep her in your thoughts and prayers.
Susan
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