"Shirley will tell us when." We hear that a lot! We are still in the CICU and it almost feels like we'll never leave. We may have moved closer to the exit but it was never a guarantee that we would be exiting soon. Just as I said in the last post, on paper Shirley looks like she is struggling but every time the docs look at here in the flesh they see a happy baby that doesn't appear to be struggling.

Her respiration rate has been consistently high since surgery. She takes anywhere from 80 to 100 breaths per minute (BPM) this is called, tachypnea. It would be best if her RR were between 30 to 60BPM. When you watch her chest rise and fall as she breathes you can see that it looks like hard work. Watch the video at the bottom of this post to see what her labored breathing looks like. I've talked about the high flow nasal cannula (HFNC) before and unfortunately I have to talk about it again. She has been on the HFNC since last Sunday and when she was extubated. It is supposed to help her breath a little easier by forcing air into her lungs... They often explain it by saying imagine sticking you head out the window of a car while driving down the road. Neither of those are great explanations but you get the picture. She started on a high flow of 6LPM last Sunday and was weaned all the way to 3LPM within 5 days. It never really helped her RR and today they almost turned it off entirely. The doctors had one last thing up their sleeves though. Turn the HFNC up to 8LPM and see if the added pressure would help. They didn't expect it to do anything and said they thought it would be turned off by midday. Well it worked... her RR has been in the 50's most of the day. Bad news is that you can't leave the CICU until the HFNC is set to <4LPM for at least 24 hours. Since Shirley just started responding at 8LPM its probably going to be a while before she is weaned to <4LPM. The good news is that this will help her lungs. Lots more to say but it just drags on. 

Her heart rate has come down to about 150BPM and for Shirley that is pretty good! The drug she is on to help with perfusion is allowing blood to flow to the body easier than it was before and in turn hopefully decrease the amount of leakage back into her ventricle. You learn something new here everyday and we recently learned about a hormone called B-type natriuretic peptide (BNP). When the ventricles of the heart undergo volume and pressure changes, in Shirley's case, blood leaking back into the ventricle, it synthesizes BNP. It functions like a natural vasodilator, decreasing vascular resistance. It's not really a great thing though and is often times used as a predicting marker for congestive heart failure. Don't go freaking out! Shirley isn't in heart failure territory but she has elevated levels of BNP and its worth keeping an eye on. Her concentrations are about 20 to 30x higher that the average neonate. Some of this is to be expected but its still rather high. The hope is that it will trend down over the next few weeks and be a marker for her recovery. Just have to wait and see. 

So we'll wait for Shirley to tell us when she is ready to leave the CICU. This may seem like a negative post but its really not. Shirley is doing well! She is only on two drugs right now Lasix and Captopril. That is almost nothing compared to what she was one after surgery. If Shirley were really struggling they would be intervening much more. 

Please keep Shirley in your prayers.

-Joseph