So about 6:30am I woke up with an anxious feeling that I needed to call the hospital right away. When I called I was told that the nurse was busy…..hmmmm that seemed weird. (usually at that time the nurses are wrapping up for the day and settling out) I called back 15 minutes later and was told Jane had just had another episode of bradycardia and de-satting. About the same time that Jane was having her episode the dr walked by her room. Wow- talk about perfect timing!!

The Dr and nurses were all impressed and amazed at my timing. I don’t know what to say about that except… Wow, that was really neat!

Today Jane is 6 weeks old…my gosh how time flies!

Jane appeared to be recovering well from Saturday and then decided to get us back on our toes this morning by dropping her heart rate and oxygen saturation. The Dr told us that small babies can do these things because of immature brain function, but they don’t know for sure if it is that or a mechanical issue with her breathing tube. Her airway is so small that a couple of millimeters can cause the tube to be too far in her airway or extubate her by being too far out- its such a fine line. Even a shift of her head can re-position the tube. I’ve really come to hate breathing tubes.

Overall, with a few set backs here and there, she is still making micro steps forward. Her liver numbers have dropped again as of two days ago and her kidney dysfunction remains stable. Her heart still looks great and her lungs are starting to look a tiny bit more compliant. Her clot has not grown in size but there is still a lot of concern because they think there is a connection that formed between the aorta and IVC (inferior vena cava, the great vein that sends blood back to the heart) Again, it is a simple procedure to fix that, but not a simple procedure for Jane given her critical condition. So, they will keep their eyes on it.  Besides her early morning event, she is looking pretty good today. She is on IV pre-digested nutrition and they are also going to start her back on a very small dose of formula to get her gut working again. In the meantime, they will continue to wean her ventilator settings as long as Jane tolerates it and continue to discuss transferring her back to CHOC.

Pray that these days be shortened so that we can all go home together. Pray that her lungs heal and get strong and that her heart can keep up with the demands of her lungs so that we can get that breathing tube out of her.