A Step Backwards

We finished Evie’s antibiotic for her trach infection on Saturday, but Evie is still not even close to being back to her baseline. She’s maintaining her oxygen levels and doesn’t have a fever, thank goodness, but her trach secretions are still very thick, she’s not tolerating her feeds yet, and she’s pretty lethargic.

We’ve put Evie on continuous feeds (a constant slow flow controlled by a pump. Here’s a video another family did about using a feeding pump) and hopefully she’ll tolerate it this time around.

We used the feeding pump when she first came home from the NICU, but her feedings would take 1.5 hrs to do and she usually threw up a lot of it. Switching to gravity feeds (allowing the milk to flow in from a syringe rather than being pushed in by the pump. Here’s a video demonstrating how this is done) made all the difference for her.

This feels like a major step backwards. She’s so used to being unattached to anything during the day, I just don’t know how she’ll tolerate being connected to a feeding pump all day. Not to mention that the beeping alarms of the pump are giving Ty and I some major flashbacks to those very dark and difficult days when she first came home.  I’m surprised the pump still works after the way we berated and cursed it in those first few months!

We did continuous yesterday afternoon and it went fine until a few hours after she fell asleep when she threw up everything in her stomach and took an hour to calm down again. We then stopped the feeding for the night.  Even with feeding her literally all day, she still won’t get the calories she needs unless we can go back to adding her blenderized foods to her feedings. For whatever unknown reason, Evie requires a much larger amount of calories than those the same age as her and when she doesn’t get that full amount, she loses weight very rapidly rather than just maintaining or losing slowly.

We’re pretty discouraged and confused. We’ve put her back on the antibiotic until we can get into her pediatrician on Wednesday and do another trach culture. Why does Evie always throw a curve ball on holiday weekends?????

Please be praying we can figure out what’s going on and get her gaining weight again. She’s supposed to have a scope done June 3rd in Cincinnati and we are praying hard that we can still go.  Thank you for all the prayers and support. We definitely feel it.

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