Shyloh has been diagnosed with NEC

barneyo

New member
Hello y’all, Shy has been intubated. She has some inflammation in her intestines😞 They think we caught it early enough tho. They started her on 3 different antibiotics that seem to be working so far. These next 2 days are going to be long and stressful, and I’m already a mess😭😭 She has a tube to drain the gas and air trapped in her belly. They stopped her feeds for the next 2 weeks, but she is receiving other nutrients. Shes now 29&1(6 days old)🙏🏽
 
Thanks y’all. She’s getting ready to go in for surgery, we don’t know the extent of the NEC…We will know once she is opened up!💔😭
 
@barneyo Hi there! Fingers crossed for Shy's surgery. The waiting can be the worst. My son did not have NEC but does have hirshprungs and needed bowl surgery at 5 days old resulting in an ostomy. We also had a bout of enterocolitis after he was reconnected (he lost his entire large and a bit of his small intestine). If the end result today is an ileostomy or colostomy I highly recommend finding a pediatric surgeon who specializes for the reconnect. Please update us on your tiny warrior when you can!!
 
@barneyo Sending prayers for Shy and you. Can I have dinner sent to y’all one night? Or have snacks or drinks delivered? My heart goes out to you.💗
 
@barneyo I think I sent you a message? I can Instacart or Walmart+ things you might want or need, or I can Venmo you. Just let me know what works best for you. Prayers for a quick and successful surgery!
 
@barneyo Is there any bowel perforation? Hoping the best for your LO. Our baby had medical NEC. He’s sleeping soundly next to me in his crib at home as I type this
 
@barneyo Our guy had a lot trouble with digestion and bloating for a while after he was extubated, the cpap doesn’t preferentially push air into the lungs like the ventilator tube did and so he was sucking a lot of gas into his stomach and guts during feedings that was inflating the poor guy like a balloon.

It took a few weeks of greatly reduced feedings, IV nutrition, and drawing the air out of his stomach with another tube to basically wait it out so he could get better at keeping the food in and the air out.

He did continue to gain weight on the IV nutrition, so with luck you’ll keep making progress. Hang in there!
 
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