Channing is three weeks today!

Each day is a blessing as tomorrow is never garunteed.  That statement was described to Vanessa and I during our meeting with the NICU team almost two months ago.  It was a statement that stuck with me and I think about it more each day I am able to be with Channing.  The attempt to prepare us for deep struggle with many ominous statistics against Channing, was not going to be accepted.  We knew what we were up against and were going to do what ever it took to get over the hurdle of each day and plan for the next.  So far, Channing has proven he is a relentless red headed "ginger " and will continue to conquer this disease today and all following days.  

Channing has been able to tolerate feeds through his orogastric (OG) tube that past few days, a good sign that the treatment for his infection is under control.  Saturday will be the last day of treating him for the peritonitis his care team suspected he had.  The nephrology team has kept up with the same mix of the dialysis solution, mixing equal parts of 1.5 and 2.5 dextrose for a final concentration of 2.0%.  As we have seen, this will flutuate depending on his intake of fluids.  With that being said, at the surprise of his care team, Channing is up to his goal for daily fluid intake for his age and weight!  This is a huge obstacle when treating babies with autosomal recessive polycystic kidney disease--his strength is proven each and every day.   Moreover, his pain management is finally planned and will soon be cycled off of fentanyl in the near future.  Lastly, he is off any breathing/oxygen support for his breathing and is great.  As I have said before, this can change, but we’ll ride this wave as long as we can!

Going back to work Tuesday was a very challenging task, however with the strength of Channing on my mind, I completed my first day on a very happy note.  I was able ride the elevator to his floor, walk to his room and  hold my baby boy for over an hour before going home for the night.  This is something that Vanessa and I have been able to do more of the past few days.  A great feeling for us new parents as he is more alert and awake to discover who loves him the most.  Though it has been challenging, going back to work has been a positive experience as I have realized how many people (staff) are touched by our story and support us any way possible--such an inspiring feeling.

Hard to believe it has only been three weeks since we were blessed with Mr. Channing "Superman." He has changed everyone around him in many positive ways.