happypanda
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I hope you ladies don't mind me posting here as I've just lost my son and could really use some feedback from other mothers. Loss is mentioned here, so if that upsets you, please don't read on.
My waters broke at 21 weeks and 6 days, I gave birth at 25 weeks and 6 days, my boy weighed 1lb 15oz, and seemed healthy enough. He had a grade 3 IVH, and still seemed OK, he came off vent in 2 days, on CPAP for 30 hours before he was back on vent. Then he started to deteriorate pretty fast. He self extubated a couple of times but struggled on CPAP for more than a couple of hours. He ended up, at 17 days old, (the day he died) on 100% oxygen on vent, the highest breath setting and highest pressures allowed, and his o2 sats were still only high 70's and dropping slowly. He was needing bagging frequently, and had needed full resuscitation once.
Initial lung cultures showed pseudomonas, and pseudomonas on his long line too. He was very swollen, his eyes were swollen shut. They did a blood culture and put him on antibiotics. Another baby on the unit was on "barrier nursing" but no one would tell us what for. He started getting little sores on his hands because the blood wasn't flowing properly. I assumed sepsis, his CRP was 88!!! On the day he died, he was also having seizures, he was already on 2 types of sedation, and they put him on a third one for the new seizures. His IVH was trying to resolve apparently, and causing swelling on the brain, but they refused to tap him. They told us, with his sats at 78, and full vent setting, there was no hope and to stop active treatment. I disagreed and spent a few hours watching him, and he was still having full body seizures, even on 3 types of sedation and morphine. He also felt cold to the touch. So i told them to remove his vent, so I cold hold him as he died, rather than have him die in the incubator, he lasted only 15 minutes!
Later his blood cultures apparently came back negative...for anything? Despite his CRP, and everything else, I had assumed he had sepsis. Now I'm not sure what to think, could he have recovered, anyone else's preemie have full vent with 100% o2 and come out OK? Or am I just second guessing because of the grief? I want honest feedback, as I know the risk of having another membrane rupture next pregnancy, and needing to go through all this again and knowing what to do differently.
Thanks and sorry if this is not the right place for my questions.
My waters broke at 21 weeks and 6 days, I gave birth at 25 weeks and 6 days, my boy weighed 1lb 15oz, and seemed healthy enough. He had a grade 3 IVH, and still seemed OK, he came off vent in 2 days, on CPAP for 30 hours before he was back on vent. Then he started to deteriorate pretty fast. He self extubated a couple of times but struggled on CPAP for more than a couple of hours. He ended up, at 17 days old, (the day he died) on 100% oxygen on vent, the highest breath setting and highest pressures allowed, and his o2 sats were still only high 70's and dropping slowly. He was needing bagging frequently, and had needed full resuscitation once.
Initial lung cultures showed pseudomonas, and pseudomonas on his long line too. He was very swollen, his eyes were swollen shut. They did a blood culture and put him on antibiotics. Another baby on the unit was on "barrier nursing" but no one would tell us what for. He started getting little sores on his hands because the blood wasn't flowing properly. I assumed sepsis, his CRP was 88!!! On the day he died, he was also having seizures, he was already on 2 types of sedation, and they put him on a third one for the new seizures. His IVH was trying to resolve apparently, and causing swelling on the brain, but they refused to tap him. They told us, with his sats at 78, and full vent setting, there was no hope and to stop active treatment. I disagreed and spent a few hours watching him, and he was still having full body seizures, even on 3 types of sedation and morphine. He also felt cold to the touch. So i told them to remove his vent, so I cold hold him as he died, rather than have him die in the incubator, he lasted only 15 minutes!
Later his blood cultures apparently came back negative...for anything? Despite his CRP, and everything else, I had assumed he had sepsis. Now I'm not sure what to think, could he have recovered, anyone else's preemie have full vent with 100% o2 and come out OK? Or am I just second guessing because of the grief? I want honest feedback, as I know the risk of having another membrane rupture next pregnancy, and needing to go through all this again and knowing what to do differently.
Thanks and sorry if this is not the right place for my questions.
Sorry for your loss hunni and sorry i cant offer any advice to you.
