The past few days have been a bit odd—Charlotte was doing so great that the doctors started weaning her off of different therapies. When they weaned the Vapotherm from 8L to 6L/hour, Charlotte’s respiratory rate started climbing. Over the past 2-3 days the doctors have been tweaking the therapies and drugs to try to get her to a normal-range respiratory rate. So…they’ve raised the Vapotherm to 8L and added a new drug, Flolan, via IV to treat the pulmonary hypertension. This all brought the rate down a bit and it stayed steady. Today they took her off her Milrinone, the last IV drug from post-surgery. She seems to be tolerating that change well, though her breathing rate has not significantly decreased.
The nurses and the doctors are concerned about the breathing rate and the fact that she is not really gaining weight. But they keep reassuring us that it is normal for a newborn to breath rapidly and that Charlotte is demonstrating no distress. The respiration rate is important, but apparently the fact that all her other vital signs are normal is also good.
Where are we? Well, we’re at a plateau. We and the doctors are impatient to see more significant strides. Charlotte is taking her own sweet time to get better. It is beyond frustrating and a bit scary. The doctors are basically working with the drugs and therapies to determine what order things can be weaned. It’s a bit of “try and see” approach, albeit with a lot of experience and knowledge. And it is imperative that our little honey gain weight.
All this to say that if you don’t hear from us in the next few days, that probably means that nothing has changed appreciably. No news is, then, no news.