the very next day, we schlepp ourselves into the pulmonologists office where we are always ushered into the exam room right away. 

this particular day was no different. 


except this time around, C and i are fairly more subdued and worrisome. 


in every room, there are fun little things to occupy the children, or parents. 

on the wall is some sort of heat activated board, it’s pretty cool, you can draw with your finger or press your hand and it turns red, blue, yellow etc. and it stays that way for a little bit. 

it can be quite mesmerizing. 

each time we are there, my husband likes to press random body parts onto this heat plaque…hands, knees, elbows, half his face etc…


hey, its the little things.


but this day, we just sat there. 

in silence.

holding hands.


an eternity 5 minutes go by and we are greeted by our favorite nurse, J, Dr. M and this is also where we meet the dietician. 

baby girl gets weighed and she’s gained weight since the last visit! 

yay! 

…or so I thought.  

once the dietician  starts calculating baby’s weight, she figures out how much is gained per day. the math shows baby girl actually went from gaining 25 grams per day to 16 grams a day. 

took me a minute to realize, that’s a decline. 

so all of these rolls and folds and chunkiness — are not true depictions of how she’s growing. 


my milk isn’t enough for her with this disease.

her pancreas is not breaking down the food as it should, so her body isn’t absorbing the nutrients, making her nutrient deficient. 


my milk is not enough.


immediately we are shown capsules of enzymes. we have a choice of two different brands.

one brand has fewer, but larger, beads, or enzymes.

the other has many, yet much smaller, beads.

 

we must break open the capsule and pour out these tiny little beads

ha! why did i think this would be fairly easy and that the enzymes would be in a liquid form for an infant? 

 

there are a few options for administering then to her:

1. pump breast milk, pour them into a bottle with the milk and serve.

yeah. probably not. 

2. put them directly on the boob for baby to help herself.  

um, no. that wasn’t working ’cause, physics, man. 

3. mix them with a little bit of applesauce and spoon feed them to her. 


okay. now that’s doable. so i need to make a HUGE batch of applesauce but this is easy enough! 


no biggie. 


the dietician then informs us that we must make sure that not even one (tiny) enzyme stays on her skin or in her mouth for too long or it will “create a painful sore or lesion” (awesome) and a “finger sweep of her gums is necessary.” 



“how many times a day does she need these,” i ask. “once? twice?”


“before every meal. snacks, too. 

anything and every time she eats, you will need to administer enzymes to her,” the dietician informs me. 


“what about night feedings?” 


“enzymes before those, too. every meal.”

obviously i wasn’t fully understanding. 

“oh, okay. how long will we need to do this? a month, 6 months? a year?”

“for the rest of her life.”



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