Author: andy@freedomsplash.com

We received some bad news on Thursday which completely caught us off guard… I’m sending out this special update asking for prayer for Julie.  She failed her swallow test Thursday which has prompted us to agree to a 4th surgery for a g-tube and a nissen fundoplication.  The g-tube is simply a hole in the… Continue reading Day 88 Update #43

Our feeding sessions with Julie really took off… Julie has made tremendous progress this week.  The doctors tried to remove the cannula for an hour, but Julie’s oxygen levels dropped just a little too much, but at least they gave her a try. Despite that failure, Julie is down to .2 liters/minute of oxygen (from .3).… Continue reading Twelve Week Update #42

We continue to have frustration with the OT and feeding therapy… Julie continues to make mostly slow, steady improvements in her breathing and feeding.  The steady is good, the slow is driving Sarah and I silly which is mostly frustrating. Julie is still on the low-flow nasal cannula.  Her Co2 levels have been high, but… Continue reading Eleven Week Update #41

We a word from the NICU doctors and nurses we had not heard since Julie’s birthday… home!   Julie was promoted to the low-flow nasal cannula this past week.  She went from 6 liters/minute of air to 4, 2, 1.5, and 1.  She is now on 0.3 liters/minute and 100% oxygen.  This is a “go… Continue reading Ten Week Update #40

The wait appears to be working… Just a quick note for Julie’s 9th week in the NICU… She is still on the high flow nasal cannula.  Started at 6 liters/minute and dropped to 4 by last update. She was reduced to 3 liters/minute Sunday and 2 liters/minute on Monday.  Her Co2 level was 43 on… Continue reading Nine Week Update #39

  I finally finished with school for the semester so I had one less distraction for a while. The week finished with more good news…   It’s been two months since Julie was born.  This was the day she was originally projected to be born.  So, it’s happy birthday, sort of. This has been a… Continue reading Two Month Update #38

We crossed into a new month with diminished optimism. Despite Julie’s progress, we seem no closer to going home that when we began in March. We never thought Julie would take so long to recover. Of course, she made good progress, but the doctors still couldn’t give us a date when we could leave. Julie… Continue reading Eight Week Update #37

Julie didn’t bounce back quite as fast as we hoped… Whew, I’m a couple days behind on updates… Julie has been stable since her third surgery – one week ago today.  She is still on the ventilator but should be moving to the CPAP machine soon.  The staff has been gradually reducing the settings on… Continue reading Seven Week Update #36

After returning home from the surgery and post-game show I posted this update… Julie’s 3rd surgery went as planned with the expected result.  Before surgery, her right diaphragm was down to her 5th or 6th rib whereas the left diaphragm was down to the 8th rib.  After surgery, her right diaphragm was down to the… Continue reading 3rd Surgery Update #35

The solution I desired came the next day… I talked to Julie’s pediatrician and he told me that she is scheduled for surgery…again.  This time the surgeon is going to lower Julie’s right diaphragm.  It is riding about 1/3 too high preventing the right lung from fully expanding when she inhales.  So, she has only… Continue reading Day 43 Update #34