Today was a long day! We woke up at 8 am to feed Austin and get all of his treatments done before we left for San Jose State so Tyler could register for a test he needs to take this weekend.
From San Jose State, we drove to Austin’s first CF appointment at Stanford at 1pm. I definitely liked the area of this clinic much more than the city for the clinic at UCSF.
This appointment lasted over 2 hours and we met his new team, two nurses, a social worker, and a dietician. his new respiratory therapist was not in today. Everyone seems pretty nice and Austin kept smiling at everyone, even right after the nurse gagged him with a throat swab.
Austin weighed in at 11 lb 11 oz, which is pretty good, but still not quite the gain we were hoping for. We now have to give him 3 bottles a day, fortified with formula. I am really annoyed because Austin breastfeeding is so much more efficient at getting milk out than pumping is! I told the nurse that I don’t think I can pump enough to keep up with the amount he will need for 3 bottles and she suggested possibly adding more formula/water combination to breast milk or even try feeding him one formula only bottle. I hope that we can figure something out or that I am suddenly magically able to pump more haha.
One thing I am actually excited about is the timeline for Austin’s transition from manual percussion to the vest at 6-9 months old!!! That was much younger than I originally anticipated, since we thought he would be 1-2 years old. This vest (About the Vest) will make his treatment times go a bit faster since he will be able to do his nebulizer medications while wearing the vest for 30 minutes.
Anywho, that is pretty much all I can think of! I hope this extra formula will FINALLY make him gain some more weight and climb back up that growth chart.