As we suspected/planned for/trained to handle, there is a lot to manage at home for Miss Cora! At first, I wasn't able to nap much, but now, I can sleep on command. Primarily, our days and nights revolve around feedings. Cora and I are still slowly working on breast feeding, but as she is still developing PO eating skills, we are still focused on the bottle (with breast milk). Since fresh is best, this means that I'm still pumping alongside her feeding schedule.
Cora eats every 3 hours: 2, 5, 8, 11 AM/PM. First, we offer the bottle (this week, a full feed is 60ml, which is 2 oz). Whatever amount she eats in 30min by mouth is our primary focus right now. She is definitely increasing her intake, right now she is averaging over 50% of each feeding, which the overall volume increases each Monday, so her total volume intake by mouth is really growing! Sometimes Cora is alert and queuing and takes the majority of the bottle in 30min or less. Other times, she is sleepy and we try to rouse her. Infrequently, she is half awake, but queuing for bottle, but tongues it out and gets frustrated.
Whatever amount that is leftover in the bottle, we then set up to run over her feeding tube by pump, which runs over a half hour period after bottle feeding, or 1 hour, if we let her sleep through it. This is when we have to keep a close eye on her, because she could pull out her tube, which would be dangerous, while running, because it could aspirate her lungs, if she pulls out the tube. We have learned to deal with her monitor, which we set up at night to allow us to go back to sleep while her feed runs.
Then, I have to pump. I offer her the breast 2 times per day. She is getting better, but it is definitely a slow process. I measure out the milk for the next feeding and add the 3/4 teaspoon of formula, clean the pump parts and store the excess milk.
Now, we need to administer her meds. She currently takes 8 medications over a daily schedule: diuretics (2 - for her lungs), electrolytes (KCL - to replace what the diuretics remove), Prilosec (for acid reflux), multivitamin (which we hate), antibiotic (for preventing kidney infection from her bladder reflux). At least with her NG tube, we can push these through her feeding tube rather than her having to swallow them down, yuck! Finally, she takes 2 meds through a nebulizer for her lungs, which we do twice a day.
We try to administer the meds slowly and hope that she doesn't throw them up. We try to soothe her by keeping her upright as much as possible, to let gravity help with her acid reflux and also if she is straining to poop. Still, she often will vomit and we, Matt in particular, are learning to deal with it.
We also spend a good deal of time parenting Stella, eating food or cleaning up afterwards, doing laundry, trying to nap, and going to Cora's follow up appointments:
Pediatrician (weight check on Tuesday revealed she has gained a good deal, now she is 6lbs 12oz)
SICC (Duke clinic) - another appointment today
Eye Clinic - yesterday's follow shows additional regression of ROP, but still need 1 more follow up.
Cora eats every 3 hours: 2, 5, 8, 11 AM/PM. First, we offer the bottle (this week, a full feed is 60ml, which is 2 oz). Whatever amount she eats in 30min by mouth is our primary focus right now. She is definitely increasing her intake, right now she is averaging over 50% of each feeding, which the overall volume increases each Monday, so her total volume intake by mouth is really growing! Sometimes Cora is alert and queuing and takes the majority of the bottle in 30min or less. Other times, she is sleepy and we try to rouse her. Infrequently, she is half awake, but queuing for bottle, but tongues it out and gets frustrated.
Whatever amount that is leftover in the bottle, we then set up to run over her feeding tube by pump, which runs over a half hour period after bottle feeding, or 1 hour, if we let her sleep through it. This is when we have to keep a close eye on her, because she could pull out her tube, which would be dangerous, while running, because it could aspirate her lungs, if she pulls out the tube. We have learned to deal with her monitor, which we set up at night to allow us to go back to sleep while her feed runs.
Then, I have to pump. I offer her the breast 2 times per day. She is getting better, but it is definitely a slow process. I measure out the milk for the next feeding and add the 3/4 teaspoon of formula, clean the pump parts and store the excess milk.
Now, we need to administer her meds. She currently takes 8 medications over a daily schedule: diuretics (2 - for her lungs), electrolytes (KCL - to replace what the diuretics remove), Prilosec (for acid reflux), multivitamin (which we hate), antibiotic (for preventing kidney infection from her bladder reflux). At least with her NG tube, we can push these through her feeding tube rather than her having to swallow them down, yuck! Finally, she takes 2 meds through a nebulizer for her lungs, which we do twice a day.
We try to administer the meds slowly and hope that she doesn't throw them up. We try to soothe her by keeping her upright as much as possible, to let gravity help with her acid reflux and also if she is straining to poop. Still, she often will vomit and we, Matt in particular, are learning to deal with it.
We also spend a good deal of time parenting Stella, eating food or cleaning up afterwards, doing laundry, trying to nap, and going to Cora's follow up appointments:
Pediatrician (weight check on Tuesday revealed she has gained a good deal, now she is 6lbs 12oz)
SICC (Duke clinic) - another appointment today
Eye Clinic - yesterday's follow shows additional regression of ROP, but still need 1 more follow up.
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