Grey skies and "sonny” days

We apologize for the lull of updates/posts the past few days, Santa’s visit took a lot out of us, including Channing.
Though numerous days have been cold and grey, inside Channing’s room has been active with bright positive milestones that exhilarate our heartfelt days.
He has tolerated the increase amount of feeds as of late.  Though his OG tube has been moved and now enters his nose and ends in his stomach (nasogastric tube "NG" tube), he now has a better ability to suck.  This has come in handy since he is more interested in his pacifier and a bottle, yes a bottle.  With the increase feeds, the care team has changed how he is fed as well.  Instead of continuous feeds through his NG tube, the care team adjusted him to bonus feeds.  He is fed 14.7 mL/hour for two ours then is off feeds for an hour.  This process is supposed to test his body’s ability to tell him that he is hungry.  On the contrary, with peritoneal dialysis many neonates do not feel hungry, especially at Channing’s age, because of the constant full feeling from the dialysis fluid in his abdomen.  Contrary to the contrary..... Channing has proven he is one upping his disease, he took his first bottle on this past Friday!  It was a slow adjustment for him, but did very well for his first time.  While we have been away from the hospital at night and some mornings, a few nurses have had much success and others have not.  He feeds better with mom and dad.  However, it is a new task for him, but will hopefully improve with time.  This past weekend a different nephrologist as on-call and was new to Channing’s strength, the nephrologist was surprised the he was taking a bottle at his age.  Mic Drop.....
His Dialysis fluid "Dialysate" has been at 2.0% dextrose for the past three days and has been working well. Each 45 minute dwell of the dialysate, he achieves 8-15 mL of output.  This is a great thing to see that shows PD is working well.  He is tolerating 24 hour ‘round the clock fills and dwells.  Additionally, his dialysate is just that, no more antibiotics to treat his issues with peritonitis--the infectionhas resolved!
Channing is off fentanyl for pain management, however he has PRN (as needed) Tylenol to take off the edge of discomfort, but is rarely needed. This has made him more alert the past few days as he has had wide eyes to view the amazing world around him.
WIth all of these amazing milestones and signs of strength from our little Superman, Vanessa and I are still having a hard time with feeling overwhelmed and anxious.  Though as any new parents it is expected, our current circumstance makes it much more difficult.  We know we aren’t the only ones since the NICU is primarily full with little babies in need of care.  Managing home and personal lives when all we want to do is be with our boy is difficult.  Making sure we have enough time in the day to drive to the hospital, stay to witness milestones, and create a "normal,"  life has been a relentless struggle.  At times with joy, yet many in dreadful sorrow we have broken down and cried many days and nights.  Having the endless support of family and friends has buffered this continuous hardship we face and are always thankful.
Here are a few monumental moments of the past few days.