Day 32

Wren's air bubbles in her lungs are still not any worse today.  We talked to Dr. Merchant, and it's pretty clear that we need to decide on a course of action and what to do next pretty soon.  She is not really sustainable as she is and eventually we have to try to change something.  Our choices are 1) do nothing and wait a week or so to see if anything changes, 2) try and re-insert the tube back in the left lung and give the right lung another shot at taking care of the blebs (at risk of damaging the lung or putting her in an endless cycle of support) or 3) try and extubate her and put her on a CPAP.  That last one is unlikely to work, though it could.  If it didn't work, it could either result in a sudden passing, or a slightly slower passing.  The doctor's concern is that it would be easier to try aggressive treatments if the only thing she was facing was this lung problem, but she's also still facing an untreated PDA (heart murmur), some PVL brain damage, and what looks now like a slight hydrocephalus (not nearly as bad as Avery's).  It is in the realm of possibility that she would need fairly long-term intensive treatment, like needing oxygen from a ventilator for the first few years of life, meaning she wouldn't be able to come home.  Granted, that is only one scenario and there are some that are much better.  Regardless, I wish it was easier to know how to do what's best for her.  I told the doctor we would try to decide the next step by Sunday.  For now, it was nice that Shannon just got to hold her today.

Avery had another successful day off of the tubes.  They switched her SiPAP out for a more traditional CPAP, since it is easier for these to provide a little stronger pressure, which it looked like she needed with her right lung kind of flattening a bit too much.  She has been tolerating her feeds much more lately and is working up to I think 12 mLs now.  Her reservoir for her hydrocephalus is still being tapped with around 13-15 mLs of CSF fluid every other day or so.  It sounds like maybe a week or two until she is completely breathing on her own, if all continues to go well.