Day 68

It's been another two-steps-forward, one-step-back kind of week.  While Avery did well breathing on the cannula for a while, the doctors noticed she was steadily having to work harder and being just a bit shorter on breath.  While they might have normally let her work through that, they really want her to be in a good state for her surgery on Monday, so she ended up going back to CPAP a day or two ago.  On the plus side, though, she is now officially big enough (past 1800 grams or about 4 lbs) to wear premie clothes!  Behold:

Her surgery on Monday will be similar to last time.  There will be a neurosurgeon, a nurse practitioner, our neonatologist, regular nurses, and anesthesia.  She will go under general anesthesia and be placed on a breathing tube with a ventilator, the surgeon will make an incision at the same place where the reservoir in her head is at and will pull that out.  He'll place a new device in pretty much the same spot.  It looks like this thing:

The stem on the left goes on the ventricle and has pores to pull in the brain fluid.  It goes to a little reservoir on the end of it and then a small valve that controls the flow of fluid, which is really the critical component.  The tubing will then run from the top of her head, behind her left ear, down the back of the neck, over the shoulder and down to the stomach, where a second incision will be made to place the remaining tubing coiled up in the abdominal cavity around the stomach. This will allow for brain fluid to be slowly drained in that cavity and then reabsorbed by the body.  It sounds like the tubing will visibly protrude from the skin at first, but she will grow into it and it will eventually be invisible.   Though it's hard to tell in the picture, there is quite a lot of tubing there that will be long enough for her to grow as tall as six feet or without needing a replacement.  So, basically, in our vertically-challenged family, she would probably never outgrow it.  

I'd like to take a quick break and give a shout-out to Kersten for making it through the details of the surgery.

It sounds like the surgery itself isn't particularly difficult and is fairly quick.  She starts at 7:30 and should be done within a few hours.  The biggest immediate risk of the surgery is the risk of introducing an infection, the same as any other surgery.  The other big risk is that the device itself can fail early on, impeding the flow of fluid and again causing CSF to build up in her brain.  Dr. Cherny said that the statistics are roughly showing that around 30-40% of these devices fail in one way or another during the first year, and more like 50% fail by the end of the second year.  On the same token, there are some kids who go through their whole life and never have the equipment fails.  If it does fail, it would require another surgery to pull out the existing equipment and replace it with new stuff.  The trick is, since she won't be continuously monitored when she's at home, we're supposed to learn how to recognize when she is showing symptoms that the pressure is building in her brain.

For Wren, her oxygen needs remain high, but she still shows no signs of regressing to the point of needing to get back onto a ventilator.  Her blebs have continued to remain down, and she has slowly continued growing.  Within a week or so, she should be big enough to graduate out of the enclosed isolette into a crib.