Day 115 - Limit the Variables

Saturday, April 24th, 2021

James lost 10 grams last night, but overall is up for the week average.

We are not making any changes today to limit the variables. Right now we are pretty sure James' BPD spells typically start with a dirty diaper. The sooner that diaper can get clean the sooner it is over. Currently James is on bolus feeds via a farrell bag, which allows him to vent. He has pretty bad gas so Mom is going to do her best with being dairy-free, just to see if that could help. She was a vegan once so it shouldn't be too hard. Lol

Our primary nurse was back today and she is excellent at having James try new things! This morning James started off at 7:15am with a pretty bad BPD spell to welcome all to shift change. Mom then held for 2 hours. Afterwards James had some tummy time on the boppy and we turned his crib so he was facing the big window to get some natural light. He has really been into his pacifier (a soothie) and now begs for it. The picture collage below is showing all of the faces he makes to ask for the pacifier. Adorable! Mom held a pacifier to his mouth for a few hours in the wee morning so during the day we are trying to eliminate the want for soothing himself back to sleep with it. He did pretty good with being awake during some parts of the day.

In the late afternoon Mom assisted by an RT handled the trach tie change. Dad came to relieve Mom for the Saturday night switcheroo. He is getting some quality time with James and was able to hold him as well. Photos below.

5p:  Brady during holding time. 

6:30p: Brady ... BPD spell

7:40p : Brady ...  BPD spell 
8:15p: Bath time!  James did well.  He weighed in an lost another 65grams.  He’s now snuggled up in his personalized blanket and Boppy.  Time for his feed and a nap. 

9:45pm: Brady ... BPD spell

12:30a: Brady ... BPD spell

2:45a: Brady ... BPD spell

5:30a: Brady ... BPD spell

6:45a: Brady ... BPD spell

It was a tough night for Baby James. 😔