Preparing for Christmas

Well, it’s the eve before Christmas Eve and all through the house is us stirring around to depart for Channing’s penthouse. His stocking is hung near his bassinet with care with hopes that Santa would soon be there.  His parents nestled all snug in his room on the couch-bed while visions of more milestones danced in their heads.

As Channing approached his actual due date today, he has experienced a few changes since our last post.  He has had some inconsolable nights, however his nursing staff and care team troubleshooted his needs.  They came to a conclusion that he may be experiencing reflux or discomfort due to a small increase in his dialysis fluid.  A change from 30mL (1 oz) to 35mL was made to hopefully achieve more output "urine," in his current dialysis process. In an attempt to treat this hypothesis, a decrease in his fluid (breast milk) was made.  He was receiving 47mL over a two hour period of time; first starting with bottle feeds then the rest through his NG tube. An hour of no feeds would follow for hopeful hunger pains to take a bottle the next feed.  He now takes 44mL with the same regiment and so far so good.  It is amazing a small change like that can do wonders on a tiny tummy.  Additionally, his feeds are still supplemented with sodium bicarbonate twice a day and sodium chloride every feed and since his feeds "dose" has been changed, Kcals are added to his feeds for additional calories as well... Wheew!  Just like daddy drinking his protien shakes, however his supplements claims are supported by the FDA and his daddy’s is probably just neskwik in a fancy bag promising to look like Arnold Schwarzenegger.
Channing has blood draws every 48 hours to check his electrolytes and blood gases.  Nephrology has stated that treatment with peritoneal dialysis is a moving target, however Vanessa and I believe they have hit the bullseye more often than not.

Channing has had some days with occupational therapy and physical therapy to keep him on track with developing motor movement.  SInce his peritoneal dialysis catheter is healing very will, OT got the approval from nephrology to try "tummy time."  With Vanessa’s eyes glued on Channing, he lifted his head, looked at his mama and turned his head.  This was a HUGE success!
We hope in time, he takes more or all feeds from the bottle and less from tube feeds.  However, this is usually a problem with the treatment for ARPKD and peritoneal dialysis; a continuous full feeling as I said in the previous post as I alluded to Thanksgiving dinner.
On that note, we are preparing for a home cooked with our amazing family for Christmas.  So as Channing’s mom and dad wake up in his NICU room Christmas morning, we hope our wish of growth and strength in the following days comes true.

We hope all of you supporting us and Channing have a Merry Christmas thank you for the support!!

Channing’s Christmas photo shoot with his favorite nurse and some other great moments follow....