Avelyn has been progressing with her feedings over the last few days, but she has also been getting increasingly more fussy. Sean and I have tried to stay on top of her pain management, so we don't think it's mainly due to post-surgical pain. The worst of fussy spells seemed to correlate most with gas, bowels or possibly reflux. When she cries she is at risk for desaturation plus all of her straining puts more stress on her little post-op body which likely makes her pain worse. To make matters worse Sean found blood in her stool this morning. While this could amount to nothing serious, as a cardiac baby she is at a high risk for Necrotizing enterocolitis or NEC-which is essentially necrotic intestines due to poor perfusion.
Since the blood was found in her diaper this morning, all feeds have been held, X-rays were taken and labs were drawn. We won't know for sure if she has NEC until morning. We're really hoping and thinking she doesn't. If she does she'll have to restart IV antibiotics and TPN, which means we'll likely have to go back to the ICU.
Over the last couple hours she has rested and rocked comfortably in her Grandma Shelley's arms. In the mean time Sean and I are bracing for a long night of uncertainty with our hangry little baby (and yes, it's been confirmed-she has my temper 😳). Please keep her in your thoughts. She's been though too much to have to deal with intestinal issues on top of everything else.
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