What day is it? Wednesday, July 24th

When we got to the hospital this morning, Annelise had been sleeping peacefully, and continued to do so all morning.  We tried a holding time, but she wasn’t resting comfortably, so it was cut short, and we’ll try again later.
Tomorrow there’s a bath scheduled, a retaping of her breathing tube will happen as well, and that’s where her history of unplanned extubation started... during a tape change event... so I generally don’t like them at all.  There’s always a risk when moving a breathing tube.
Since she didn’t do well extubated last time... we won’t try to extubate again.  I don’t want to go back to the place where she has to be on her stomach with her face smooshed into a pillow in order to get enough oxygen in her body!  We decided we’re definitely going with the tracheostomy.  The next step will be to get the surgery on the calendar.  We’ll most likely do a g-tube surgery at the same time, since feeding would be the other big issue to tackle after the breathing issue.
I’m not really excited about getting a trach for Annelise, but I am excited about her being able to catch her breath with a secure airway.
 We know from others’ experiences with tracheostomy’s that the care of the trach will eventually become second nature.  We also know that whatever happens, whether she needs a ventilator attached to her trach sometimes or all the time... God has been with us through more than we ever thought we could handle already... and we know He promised to never leave us... so we can be certain He’ll continue to provide peace, wisdom, mercies, and blessings like He has been already, as we adjust to being a family with a trach!
Lung issues have surfaced for Annelise in the past couple days.  She has that fluid around the  outside of her left lung still, called pleural effusion.  They are watching it with x-rays, and won’t intervene to drain the fluid until it is clinically necessary, which they explained looks like her needing more oxygen and not holding the oxygen saturations easily.  So far she is on a low amount of oxygen, but she doesn’t sound the best in her lungs when the doctors listen to her.  Praying that the fluid gets absorbed by her body, and that the cloudiness that always bothered her lungs the last time she was intubated will go away again.
She gained a tiny bit of weight again!  We joined the 5 lb. club today!!  And she has graduated to newborn size diapers!! So long preemie diapers, this big kid is moving on up!🥳😊🥰❤️
Kevin and I are ready as we can be for the next steps.  We miss home, and getting the trach will be a giant step toward getting Annelise ready to go back home.  There’s a chance she’ll be flown back on a medical flight in order to be transferred to Miller Children’s Hospital in Long Beach.  We don’t know exactly how getting home will look at this point.  But I’ll keep you all posted!  And you’ll be praying with us through the process I am sure!  That’s one of tomorrow’s burdens that I don’t need to borrow for today!
The fun note that I’ll leave this update on, is to show you a picture of the little “ears” that the neurosurgeon took the time to add to Annelise’s little hat that covers her shunt wound dressing!  The nurse’s came up with adding a bow, so now we have our own sweet Minnie Mouse to go along with our Mickey lovey that was gifted to Annelise by some of our best friends😍. Picture perfect.