Day 24

Avery successfully underwent her first surgery today at 7:30.  The neurologist, anesthesiologist, and a big team of medical staff brought all of their OR equipment and tools up into the NICU and set up shop in the room next to the one we've spent most our time in.  The actual procedure involved inserting a small reservoir (the size of an M&M) with a catheter on the end of it on her head right beneath the surface of the skin, leaving a small visible bump.  After the procedure, they successfully used the reservoir to extract 15 mL of yellowish fluid - the cerebrospinal fluid with the leftover blood in it.  That's about equivalent to a tablespoon.  They can now use the reservoir to tap out some fluid every few days.  Almost immediately after the surgery, Avery's oxygen needs from the ventilator were dropped significantly from around 40% down to a more stable 30%.  She was put under with general anesthesia, so she spent the rest of the day basically relaxing.  At the end of the day, Dr. O'Riordan talked with a thoracic surgeon and it sounds like Avery may be getting another surgery tomorrow.  This would be a surgery on her heart with a ligation to resolve her heart murmur.  The surgery involves making an incision on the back left side between ribs, moving the lungs out of the way with a tool, and getting a certain angle at the heart to apply a metal clip to closes the duct.  It sounds like recovery from that surgery is more significant than from what she got today, so we hope that it goes well tomorrow.  That will happen around noon.

This was a welcome sight in the afternoon.  The nurses are awesome and insisted on bringing the sisters back together, so they brought them back to the same room for a sleepover tonight.



Wren continues to stay level with her lungs and trying her best to recover from her infection.  We met an infection specialist today, and both him and Dr. O'Riordan do not feel yet that there's necessarily a fungal infection, though they're not yet sure what may cause the discharge on her skin underneath the tape.  It's possible that her skin is just reacting a small amount to the tape or the adhesive on the tape. I held her today and watched as her levels continue to rhythmically drop every few minutes and then come back.  I hope that her lungs can begin to heal, but it will take time.  For now, we just continue to hope that she does not have another crash.  She may end up needing to spend a lot of time on her right side for several weeks to keep the lung pressed down.  This could potentially cause some issues with her organs and things always moving that way, but she does get moved around every time they do "cares".  Her oxygen remains around 60% which is fairly high.

Both girls are taking a bit more food each day as they continue to stand it.  They still don't take much -- they both take around 7 - 10 mL per feeding, where according to their current weight they could handle more like 18 mL.  Weight-wise they are doing pretty well - they both weight about 2 lb 4 oz (hurray for two pounders!)