5 weeks and 2 kidneys short

Well it’s been a crazy fun filled 5 days away from the blogging machine.  We hope you all had a Merry Christmas.
Firstly, Channing invited his mom and dad over for a sleep over Christmas Eve night.  It was our first full night with our little man, and boy was it nice to be by his side at night while his nurses fed and changed his diaper so his parents could sleep.  Just kidding, we pulled our weight and took in some knowledge from the nurse with the most seniority in the NICU--40 years on the job!
Within the last 5 days, Channing experienced a few changes with his care.  His dialysate went up gently to a 40 mL volume which is up from 35 mL.  Moreover, the concentration of the solution was brought back down to 1.5 dextrose to slow the "pull" of fluid from him as to not dehydrate him.  This was the only change for that day since one change can make drastic changes to his hydration, electrolytes, and blood pressure.  A couple of days have past and a change to his intake (milk) was made today; a change from 44mL to 45.3 mL every three hours.  Vanessa and I were stunned by this peculiar change, 1.3mL!!? We asked the nurses why the super small amount of change to his feeds, both day and afternoon nurses stated they need to take the calculators away from the residents making this change.  We agree, a whole number of 45 or 46 would be perfectly fine.  A -0.3 or +0.7 mL additional feed won’t make or break our growing Superman.  On a more concreate common sense note, along with the change in feeds, Channing has been taking milk from the bottle with a high success rate.  Of the 45.3 mL (1.5 oz), he is drinking between 25 and 30 mL from the bottle and the rest is put on a pump over an hour via his NG tube. His feeds are still and will always be fortified with additional electrolytes as these are the most difficult to manage since he is on peritoneal dialysis/no kidneys. Occupational therapy came by today to evaluate his current feeding skills.  They pointed out different tips and tricks to help him possibly feed more from the bottle and voiced encouraging words to us new parents that he is doing very well with his feeds as it currently stands.
He is still getting labs drawn every 48 hours to check those electrolytes as I mentioned above.  Tweaks are made every time the results come back.  It is amazing how quickly the care team can make a change to Channing’s specific needs.
Another diagnosis followed today was that he now has hypothyroidism. In short, the brain is sending signals to his thyroid at a high level and his thyroid is not responding to the signals signifying his thyroid is underactive.  It is painlessly treatable with a medication called Synthroid.  Treatment is easily adjusted following routine blood draws that test Thyroid Stimulating Hormone (TSH) and T4 levels.  The diagnosis is puzzling as Channing’s heel stick test as a neonate resulted in normal function of the thyroid.  My investigative skills are to ask nephrology or NICU team if this condition commonly occurs in kids experiencing end stage renal disease, like Channing’s case.
Nephrology and NICU teams have stated they are very pleased with Channing’s response to treatments and hope he continues to stay on this track.  Now adding Endocrinology for the thyroid issue, he is becoming a very popular guy.
Vanessa and I still continue to find a balance of work, time with Channing, and normal home life.  We’ll get there as the the support around us grows, it helps in unbelievable ways.
A few great moments of the past few days.

Five week family photo.