Need to post...but really it's just more of the same

Elsie is doing well. She nursed (intermittently) for 19 minutes this morning. Her nurse and I deduced that her congestion must have been making her feel bad, and thus her refusal to nurse the day before. As my Mama said "you can't make a baby eat." True. Even more so for one with a congested nose that has multiple tubes up said nose. Bless her heart.

So feeding tube has been moved back to her mouth to relieve the swollen nasal passages. Her cannula has been bumped back up to 2 liters to make sure the air can blow past the congestion in her nose. She can nurse with the feeding tube in her mouth, but according to the occupational therapist, this can be deceiving. It may look like she is tolerating nursing well, but doing so with the feeding tube down her throat can cause issues later (who would have ever thought?). To avoid this we may lay off on nursing for a few days until the nasal passages are not as swollen, and the feeding tube can go down her nose. Something about the swallowing, with the tube in their throat can lead to developmental issues down the road.

So we are kind of in a cycle. Every few days Elsie gets really congested. She doesn't feel well, so then she doesn't want to nurse. To help her breathe they bump up the cannula. What does this do? Dry her nasal passages out even more...which does what? Causes congestion. The doctor says that this should be alleviated when her nasal passages grow a little larger.

A sentence I never in a million years expected to type: Please pray that my daughter's nasal passages grow as she gains weight, so she won't be so stuffy and we can break this cycle.

Love Y'all,
Ellen