Day 125

Wren is doing MUCH better today. She's still intubated but on a conventional ventilator and was down to 27% oxygen when I went to see her today. She's been receiving lasix daily for the past week which is a drug that helps her pee off all the extra fluid she has been retaining. It seems to be doing it's job so she is back to her normal, acceptable weight now and not so swollen. She is still on a lot of medication and a morphine drip to keep her comfortable so she tends to be very sleepy but she really is getting to a better place.

The nurses have had a hard time keeping her entertained when she is awake for those small amounts of time during the day. She really can't move around with the ET tube in her mouth so she can get restless quickly. We have the best nurses though, for real. They put together a make-shift mobile so she would have something to look at. We just love them! And they love little Wren.

The talk of a tracheostomy is becoming very real. I'm having the hardest time getting on board with this one. I know that it wouldn't be forever and I'm sure we would adjust to it quickly but it just seems like such a huge deal. And it requires a lot of care. If she does get a trach her ventilator tubes can be hooked up to the opening in her neck and she will be able to slowly transition from a ventilator to a CPAP to just oxygen and then, hopefully, to nothing. The advantage to the trach is she can come home regardless of the type of support she's getting and she wouldn't have to be intubated anymore. The docs think this process will take a few years for her. They also recommend that we get an on duty nurse to help care for her. Having a nurse in my house taking care of my baby for 40+ hours a week for the foreseeable future doesn't sound fun to me at all. Will I ever get to just take care of my own baby?! She would also have to get a gastrostomy tube in her stomach in order to eat since children with a trach can easily aspirate when eating by mouth.
Also, a sad thing that would come with the trach is she would go straight from surgery up to the PICU. We would have to leave behind all of the nurses, doctors, nurse practitioners, respiratory therapist, social workers,  etc. that we have come to know and love.

I'm hoping so much for a miracle but also trying to deal with the fact that this may well be the future that's meant for her. Mostly, I'm just so ready for her to be home and healthy. After four months of this I'm dying for our family to be able to all be together.


As for Avery, she is doing fantastic! She is such a content baby. And, guys, HER CHEEKS. They're the best.