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.


Channing meets Santa

Santa graciously visited the NICU today.  Channing was all suited up for the occasion!  I made it in the "Nick" of time for the photo op.  I haven’t been this excited for Santa in 25 years! 

Also.. Channing had to pose with his dad.. we have the same exact stink eye look.. like father like son.

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.

Change is good...

Change came in as a tidal wave for us nearly three weeks ago when Channing was born.  It was a change we were able to slightly prepare for, but still had difficulties understanding how our lives would actually change or how we would react. Then boom, November 21st blessed us with our next chanllenge that would change us forever. I have to say I am proud of how we have handled this emotionally charged circumstance we have been blessed with.  We have learned that patience is actually a virtue, Channing has done a wonderful job at showing us (me) that every letter forming that statement is true.  We have learned that beyond his care team and our wonderful family that love and support is found in many places.  We were greeted by Delta Airline pilots as they represented the "Pilots for Kids" foundation.  This foundation founded in 1983 by crew members who wanted to help with the needs of hospitalized children. It is an international nonprofit organization that just so happened to have respresentatives stop by the NICU the other day, two pilots paid a tribute to Channing.  It was one happy moment for us as we discussed Channing’s struggles and gratefully received a few handmade items for him.
Though, coupled with his daily treatments we live moment to moment with Channing.  However, with the the past week, we have since been a bit more relaxed and have taken small doses of time for ourselves.  We have successfully completed normal tasks that after three weeks of having a baby, at home parents would be dying to do. We have gone to a movie, gone our to dinner with family, and took some time to be with each other outside of the house... all without finding and hiring a babysitter. We have taken the time to have good ole’ flippant conversations to ease our moods and of course dance in the kitchen.
Channing’s care team constantly changes the concentration of his dialysate solution.  Change is a constant with this type of dialysis. Today a change to a mix equal parts of 1.5% and 2.5 dextrose to quantify a 2% solution was made.  This pulls off "filters" less than the 4.25 % i mentioned that they were using a few days ago.   Additionally, he is given more fluids during the day and.. and... is getting fed!  His care team has agreed to give him more nutrition in the form of breast milk.  He is handling this change very will and has not gotten sick, we think his peritonitis and questionable infection in his gut is mostly resolved.  They, however, are treating him still (9 of 14 days) with antibiotics in his dialysis fluid, but are feeling good that he is feeling good.  He is getting less fentanyl, every 8 hours now, with hopes to ween him off possibly by the end of this week. He is still receiving Tylenol as needed.  Wheew.. Hmmm.. anything else.....?  Oh yeah, I go back to work tomorrow... I will do my best to keep it together, however, if I can’t, the girls I work with will get me through.  I am thankful for them and all other coworkers for helping me before Channing and continue to be there for me now that Channing is here. They are an amazing group to work with...
We continue to be thankful for all that have reached out to support us, we are so grateful!
We were excited to see our little man outside his hospatil grade bassinet today... the swing looked so good on him :)

Some days...

As Vanessa and I are taken on this journey with Channing leading the way, we continue to be very thankful for family coming to the rescue to cope with us through some of our worst days--there have been many.  Also, the out reach and support of neighbors, family and friends near and far has been beyond belief and we again just want to thank you for your continuous kindness.

Today was one of those "worst days," as seeing Channing upon our arrival became inconsolable.  It is not that we feel like we are getting weak or giving up.  It is the fact that we cannot pick him up, hold him, or rock him close in some quick way to ease his discomfort; we want to with the most dire need.  It is a juggling act to get him out and hold him.  However, while hooked up to IV feeds, breathing support, and most importantly his peritoneal dialysis catheter, we do what we can to "rock and hold" him in his bassinet for "quick" mother and fatherly consolment.  Eventhough Channing is our boy, a champion of battling his illness of ARPKD, he at time feels out of reach.

A few changes to his pain management were made today, still receiving fentenyl, but a longer period between doses.  He does however, have a PRN (as needed/when necessary) order if he cannot make it between a 6 hour period during the day/night. We hope that a slow ween from this medication will occur soon as well.  He receives rectal Tylenol at certain periods of the day as well.  A change to his dialysis fluid was made today as well.  Nephrology figured that he was getting to "dry" with the 4.25 dialysis solution, so a change to a 2.5% dextrose was made prior to us leaving for the day.  He is still on restricted fluid intake through IV; he gets what he needs and that is it.  We are hoping that the treatment of infection has ran its course, as for tomorrow we hear rumors that he may be able to be back on tube feeds with breast milk.  He hasn’t had anything by mouth since last Saturday when the "infection" was discovered--poor little dude.  Changes happen daily with figuring out Channing’s needs, after some time they will be known, but in the mean time we are reminded how difficult treating this disease really is.

I have decided to go back to work this next Tuesday.  Though I am only 5 floors down in radiology, this will be a tough transition to what I (we) have gotten used to; spending 4-5 hours with him daily.  I will definitely be checking on him, maybe "get lost" to stay a few extra minutes with our amazing boy.

With this constant daily struggle we create many happy moments.  This weekend his uncle Vic was able to fly from Connecticut to Michigan to pay a visit to his nephew Mr. Channing.  Let me tell ya, uncle Vic has the touch!  Channing was as calm as a cucumber in his uncle’s hands.

2 steps forward 1 step back

To start.. I know a few lovely comments have been sent to us in previous posts.  I would like to thank you for the comments, as google, the owner of blogspot, has had issues with letting us reply to the comments.  I would like to take this time to thank you for leaving a little note for us, we believe the positive thoughts and prayers have assisted us in coping with this new world we live in with Channing. Though he hasn’t spoken a word and for such a small person, he has made a huge impact on many.  It is amazing the out reach and support Channing has created. Every thought, prayer, and mode of support we (he) receives we get stronger, so thank you all for keeping up-to-date.
Today started off with a little pampering, a haircut for the both of us; these are the small moments we get to decompress.  After my 5 minutes of fame, Vaness’a hair stylists moved to her, it was a much needed time to relax.  I headed off for the official paperwork from the county clerk in Ann Arbor, Channing’s birth certificate.  Once I received the copies I walked across the street to a coffee shop.  I paid for an hour of parking so I definitely took advantage of that hour.  I sat down dead center of the sitting area with my hot freshly brewed coffee in hand with all other patrons around me.  Wondering if I was accepted in this space I sat down confidently anyway.  I was not there to write a paper, research, or catch up with an old friend.  I was there to take a moment to reflect on my current blessed world I (we) currently live in.  Being the nucleus of the coffee shop, considering our circumstances, I had a quick thought of whether I was the most important patron within the small world of coffee drinkers.  I believe I was.  Since Channing was born I (we) have had the most focus and positively charged way of life, he has changed how we view each and every day, down to the minute.
Today comprised of a few "setbacks." I put setbacks in quotes since clinically Channing is doing very well since his birth, however, the care team is continuously challenged by his needs.  One day he needs breathing asssistance and one day he doesn’t. Well today he needed it and a litte more.  He started out early in the morning with a nasal cannula on 25 percent oxygen, room air is 21 percent.  He was getting a little bit of help.  He ended the day on a high flow nasal cannula with assistance for expiratory pressure; this was all because Vanessa, me, and family pointed out to the nurse that his breathing became increasingly labored throughout the day.  The change to the high flow nasal cannula was coupled with dialysis fluid changed to a 4.25% dextrose concentration, the highest there is.  We are thinking both NICU doctors and nephrologist are trying their best to better his breathing ability with increase oxygen and increase output (urine).  We will see when we call to get an update in the morning.  We are still not used to calling to get an update on our baby boy, we probably never will be.  One day we will be able to check on him upstairs in his room, his nursery.  However, until that day occurs, this is what we have to do.
Ok ok, enough with the sappy sapp and getting to the positively charge nucleus we live in (trying our hardest). We had another great moment today. Grandma "Gigi" Lawrence was able to hold her grandson for the first time. Again, we were elated for this moment.  Little by little we enjoy positive moments as they are granted.

Channing is 2 weeks today

It’s been a few great days in Channing’s world.  He has since cut the leash of a nasal cannula that he once needed for breathing assistance.  Though he is still treated as a premature baby and works a little bit more to breathe, he is doing just fine without the help; another milestone for our little Superman.  He may necessitate breathing assistance in the future however, we will ride this wave as long as we (he) can so he can show off his cute little face.

A change in the dialysis concentration was made today.  A change from mixing 1.5 and 2.5 percent of dextrose to equal a 2 percent dextrose dialysis solution to just using the 1.5 percent.  The 1.5 percent dextrose solution is the lowest amount the care team started with to create the slow dialyzing interaction that continuously occurs in his peritoneum.  He is essentially at his dry birth weight as much of the fluid that was retained post nephrectomies and pre-dialysis is gone; dialysis is working wonderfully!

Other than Channing celebrating two weeks today...the first grandmother was able to hold her grandson for the first time.  An amazing moment!   Channing enjoyed every minute of it!
The only time he cried was when he was in dads hands and needed a diaper change. Though still only  a smidge of meconium due to lack of feeds for treatment of peritonitis, he requested mom change his diaper.  Perfect dad move right?  However, I know I will be passed the poopy torch to change next--I have changed 3 so far. :)

Below are the amazing moments of today!