Three Little Birds

Story of 3 little birds and one who soared above us all.

Lydia update

Yesterday we had another care conference with the cardiologists, general surgeons, neonatologists, and nurses  to try to figure out a plan for Miss Lydia who likes to keep everyone on their toes and paying attention to her. We were told Saturday her fistula had reopened since they had suctioned formula from her breathing tube which lead to another bout of aspiation pneumonia and prophylactic IV antibiotics. We were then told she would be getting a GJ tube on Monday which would go in through her stomach and have a separate catheter to feed into the opening of her small intestine to finally allow for some nutrition in her gut and prevent any from refluxing into her lungs. Then we were told it would have to wait 10 days to allow for healing from surgery and then it was decided to go and give her the tube. So after gong back and forth, she got her GJ tube Tuesday and feeds were restarted. Also turns out that her fistula did not reopen since they gave contrast in her stomach tube and it didn’t reflux into her lungs. Each day we hope she’ll get extubated but then they seem to have another reason to hold off and since we really don’t want to see her reintubated imediately afterwards, we’re okay waiting and letting her lungs be fully ready. As for future surgeries, we’ll be waiting likely another 4-6 weeks before doing the esophageal atresia repair and heart surgery at around 4-6 months.  She’s had a good week so far with little need for pain meds and enjoying her mobiles and music when she’s awake. She also finally got to wear clothes today so I’ll anxiously start playing dress up with her too!


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