I took the day off from work so I could hang out with the Bun.
Her stats look good. When she is asleep, her heart rate is around 150, saturations pegged at 100, and breaths per minute around 60. When she is awake, her heart rate is around 175, saturations pegged at 100 and breaths per minute at 70-80. And of course, who can miss those big blue eyes?
This is the fourth day in a row that I spent with her, and the only thing I have noted is that she is a sleepy Bun. It just seems like she is sleeping a lot these past several days.
The good news is that it does not seem like her breathing is overly labored. Don’t get me wrong – – she is working very hard! But, my theory is that her body is working just hard enough with each breath, that it wears her out quickly. Over time, I think she will get stronger and build endurance. But for now, she will be awake for a bit and then has to take a nap or go to sleep for the night. Last night, she went to bed at 8pm and woke up at 6am and yet, she still took solid naps today when I was with her. Tonight, she went to sleep at 7pm. I guess all the visiting is wearing her out too!
Her feeding schedule changed slightly. As of this morning, they are venting for 10 minutes, feeding over 30 minutes (decreased from 1 hour) and venting for 30 minutes afterwards. Again, the goal is to work up to a bolus feed schedule where she would eat over 5-10 minutes and vent for 5-10 minutes since this is what we would do at home (they are still feeding her 64ccs of Portagen every 3 hours).
As of the end of last week, they weaned the Diamox medicine that she has been taking. The Diamox requires the central line; it cannot be given orally or via the feeding tube. So, they are hoping to wean that over the next couple of weeks, so that her central line can be removed. This is a potential source for infection, so we hope that she can avoid that scenario. Plus, we would love to be able to give her regular baths again! If you remember, she loves them!
Another NICU family that lives in Gainesville gave us comp tickets to a theater production called “Tuna Christmas” (the Mom works locally at the Hippodome Theater). It was really funny and a great escape this evening from the normal routine of the hospital. It was so nice for them to think of us during this holiday season.
Walking around downtown Gainesville in the crisp air after the show was a clear reminder of the holiday season (yes, it can get cold here – – it was 45 degrees tonight). The smell of fireplaces in the air and the holiday lights on all the buildings gave the distinct Christmas feel.
We never thought we would still be here for the holidays; we never would have imagined this journey. But we are so thankful for Ella…she means so much and is such a wonderful gift from above.
Proverbs 19:21
Many are the plans in a man’s heart,
but it is the LORD’s purpose that prevails.
