13 days and counting

Juliana is 13 days old today and counting. She is still very critical but she is improving little by little. We have had lots of lung issues arise this past week. She was put on an oscillator last Wednesday to help clear the cysts she has growing in her lungs (also known as pulmonary interstitial emphysema). She also has been having a hard time keeping her oxygen saturation levels up. (This means that her blood is not getting enough oxygen). We have found that she had an opening in her heart which has been treated and is closed for now. They also found that she had pulmonary hypertension which means that the vessels in her heart were clamping down and restricting blood flow to her lungs where the blood is oxygenated. This is being treated with nitric oxide. So far this has worked for her and the vessels in her heart have dilated (opened). While dealing with all of the issues the doctors have found it necessary to give her vecuronium which puts the body to sleep. This helps to keep her calm so that the oscillator would have a chance to function without agitating Juliana too much. The side effect of this drug is adema (swelling). She is very puffy all over. She has been off the vecuronium for the past 48 hours now, but it will take a while for the swelling to go down. I will take some more pics as soon as most of the swelling is gone. She really doesn't look good right now. She is still getting regular doses of morphine and ativan for pain and anxiety.

Just today they removed her from the ventilator oscillator and she is on a regular ventilator which uses less pressure. This will hopefully help with the expansion in her lungs. The Emphysema is still present but has not gotten worse (not better but still not worse). For right now I am happy to see that she is not getting worse. There is very little improvement in her condition but any improvement is better than no improvement. She still has 5 more doses of the dexamethasone (steroid to bring down inflammation due to the emphysema in her lungs). All we can do right now is wait and see. Hopefully over time she will continue to improve. Please pray for her health and strength.