Three Weeks

Monday, August 22, 2016

Avery last night had her first confirmed seizure last night during the night rounds.  Several staff members observed and confirmed that's what they were seeing.  It lasted about ten minutes, and they then medicated her with phenobarbital to help provide relief.  Since then she has been relaxed and had a pretty good day.  This is most likely just the beginning manifestation of the effects of hydrocephalus on her.  Our neonatologist would like us to make a decision by tomorrow or so on how to manage this.  Her best chance is to likely put in a shunt, but as was in Wren's case, it's difficult to predict in an infant so small whether the procedure can be successful.  While I held her today, she was doing really well with a nice relaxed heart rate, low CO2 levels, and good saturation levels.  She also still has a PDA that needs to be dealt with, and the Tylenol has not yet made a noticeable difference, but it also hasn't been harmful and they'll continue to order it for a few more days.  Side note, in the above picture, Avery has little cloth over her face.  They call these cuddle cloths - small cloths that you can take home and wear under your shirt or sleep with on your pillow that carry your smell.  You later bring these in and they'll put them with the babies who have even at this point a strong sense of smell. They can be comforted some just by having our smell near, especially their mom's.

Wren's condition with her lungs has stayed roughly the same since yesterday.  While she is not getting any better, she's also not as quickly approaching a decline as she was two days ago when we first spoke with the pulmonologist.  She also has her own PDA to deal with.  In addition, both of these girls are now on three weeks of being supported by ventilators, which is not great.  Typically, they want babies to be able to wean off the ventilators as soon as possible, but as late as two weeks.  The longer they stay on the support, the more it could potentially mean for them in the long run.  As a side note, there is a small leak in Wren's air tube, which is pretty normal, but the effect of it is a causes a tiny little burst of air to pass through her vocal cords and then makes a tiny squeak-like sound in her voice.  I've got some good video recordings of it.  It may be indirect, but it is a blessing to get to hear our daughter's voice.

It does seem like the cards are stacked against our girls, but I choose to hold on to faith and come what may.