Are we there yet?

During our near 8 week stay in the NICU, we have seen neighboring babies and their family’s move in and move out quickly.  Some neighboring babies have stayed for a few days and others have been evicted after a week or two. However, shortly after surgery, we were able to find a new residence with a view, we still remain.  This may sound discouraging to some of you but, we understand that Channing has his own plan for us.  Nonetheless, we would love to be home with him creating memories and watching him grow.  In due time he will be home and this current life we are living will be a thing of the past.  Vanessa and I talk about our future home life with him.  It makes us cry tears of joy of what our new life in his permanent residence will be.  Though an expected date for him to come home has not been discussed by his care team howbeit, we are more than half way to getting the eviction notice of our 2nd home, the NICU.

Channing’s care team at his bedside 24/7, the NICU nurses, have been slowly figuring out his increased needs this past week.  A juggling act of feeding and filling him for the next dialysis run has been tried, and it seems to be working.  Though some of the MD’s/residence have a hard time getting their heads out of a book and only seeing black and white, a few nurses provided a patient centered plan for Channing. The nurses know him best. Currently He receives 52 mL, close to 2 ounces of fortified breast milk every three hours.  The plan put forth this past Wednesday was to split up that 52 mL into two separate feeds within a 3 hour block.  Currently, he feeds every three hours at 9-12-3-6 and so on, drains his dialysis fluid at 45 after the hour for ten minutes, and fills for five minutes or when the prescribed fill amount is in.  Split feeding is started an hour or so before his actual feed time and before a drain of dialysis fluid and it has done wonders the past few days.  He is more consolable where before he was so hungry and upset he didn’t want to feed from the bottle.  Good job on the nurses that cued on his specific needs.  Aside from his feeds, the fill of his dialysis fluid has increased twice this week, 60 mL on Wednesday and a change today, Sunday was made for an increase to 65 mL.  As I am writing this he is dwelling with the first pass of the 65 mL and is tolerating it well while feeding.  This kid impresses us on a daily basis.

Additionally, the nurses have been showing us how to perform dressing changes on his peritoneal dialysis catheter as well as his broviac line.  We think this is a great learning experience for the both of us, it also helps build a solid relationship with his nursing staff as well.  With that being said, when the day comes and our eviction notice is presented we will both probably cry tears of happiness and of sadness.  As we will be elated for Channing to move out of the NICU to a step down unit then finally home.  We will however, be saddened to leave our amazing nurses that we have gained the most trust in as well as formed strongest of friendships. We are not there yet as we have some time left in the NICU, however we know that big day will come.  In the meantime, we will keep building our relationships with his care team into possible life long friendships.

Fill me up buttercup... we are at the half way mark.

It has been nearly 7 weeks here in the NICU, we have to say it is amazing how some of the nursing staff have become part of the family.  They are truely a unique gift to us and Channing, they are so much appreciated and treasured.  They have made our ride with Channing much smoother and less taxing as they help to treat Channing as well as us here during our daily visits in the NICU.  Currently, we have the pleasure of plant-sitting for a nurse that is on vacation.  Vanessa kindly took in the nurses plants to return the favor for taking such good care of Channing.  Though the task of taking care of plants is less cumbersome than Channing’s needs, we are still tweaking the right amount of sunlight and water requirements for the plants.  Upon our nurses arrival from vacation, we hope for a safe discharge from our home back to hers.  A detailed report to follow.

We apologize for the delay of usual posts, however we have been graciously taking time with extended family visits while watching Channing grow and experience his daily life in the NICU.  Channing has experienced a few changes since our last post. For one, he has grown a bit and is over 7 pounds.  This has made the care team increase his feeds concurrently; he is now on a 52 mL feed every three hours.  Of the 52 mL he takes 25-35 mL of it from the bottle and is now getting the rest by gravity feed through his NG tube.  The amount he is taking from the bottle is very good considering his fills went up as well.  The last post I mentioned he was not tolerating the increase to 50 mL dialysis fill, the nephrologist backed the fill to 45 mL on 31st to ease Channing’s comfort.  This last Thursday, the 3rd of January, the fills went back up to 50 mL and he is tolerating it much better than the last attempt at the same increase. Dwell time of the 50 mL is still 45 minutes as he pulls anywhere from 4-15 mL each pass.  When the change to the 50 mL fill was made the the dialysate sugar concentration was a mix of 1.5 and 2.5 percent dextrose.  This was all and well for a few days, then Channing lost 30 grams over night and also looked dry.  A change to a 1.5 percent dextrose concentration was ordered yesterday, Channing is doing well with alteration of this fluid.  Going forward, even at home, this will be the norm.

The hernias mentioned in my previous post are continually evaluated and will be treated accordingly when and if they progress.  

His iron and epogen dosages have gone up due to his growth and anemia.  

His electrolytes are managed every 48 hours and are adjusted accordingly.  His feeds are always fortified with the kcal and various sodium concentrates.  

Days are still long for Vanessa and I however, every day Channing teaches his parents something new which helps us get through one day and look forward to the next.

We are at the half way mark, 50 mL, to the 100 mL fill volume the auto dialysis cycler works on; which we will go home with in the near future.  We are also slowly learning how to bathe him and change his dressings around his broviac and dialysis catheter....always remembering this is a marathon not a sprint.  Take care all!