Today was much the same as yesterday for Natalie. They have not been able to lower her vent settings but she is also not any worse. It may take a few days for her new meds to make a noticeable difference. She is completely off of the dopamine for her blood pressure and has handled the change well. Tomorrow if all goes well she will have her first feeding (a very happy development). They are also planning another echo on her heart to evaluate the pulmonary hypertension before they make any further reductions in the nitric oxide levels. She is now at 4ppm, down from 20 ppm, but those last few adjustments down are the most delicate to navigate.
My mother went home today so we started forming a new routine. Anneliese needs to have some semblance of normalcy back in her life and I am hoping it will help us all cope a little better. Since returning home Annie has been sleeping in our bed, something that rarely ever happened before. It was a nice way to reconnect but I knew moving her back to her own bed would be easier sooner rather than later. I can't tell you how nice it was to put her in her pajamas, read to her and tuck her into bed. I have really missed those little things while in the hospital.
I drove for the first time since early January and managed to not cause any disturbances. Mundane activities such as going to Target or driving are still a little surreal to me after so much time in my hospital room. I thought I would feel a much greater sense of relief at being "free," but I now realize I won't truly feel released until my bed rest partner Natalie is home with me.
We are very hopeful that the next few days will show some improvements in Natalie's lungs and they will be able to start weaning her from the oscillator vents. As always we ask for prayers of support and good health for our little girl.