Going through it pretty bad right now. Could use your prayers and well wishes. TW complications, surgeries, etc.

Hi All; will mark as NSFW as it may trigger some of you. Father of a 27wk 2 day son, born at 400g (severe IUGR caused by CHI syndrome). Our boy has had a really rough go. He has had a “big” belly since day 9 of life, and that is still true today on day 143 of our NICU stay. We just haven’t figured out his belly. He has some kind of response where his CRP will skyrocket to 200-300 without infection and his belly gets very veiny and large. We had an ex-lap done in February, we all thought it was NEC, turned out to be an encarcerated hernia. We corrected that but it came back only 9 days later. Fast forward to a week ago today, our LO was extubated but tachypneic, we knew something was going on. We re-intubated him when we couldn’t catch him with a higher peep, ran some labs and a sepsis eval. He came back positive for staff across the board from trach, urine, and blood. During treatment, he just started spiraling. Overnight we watched helplessly as he escalated up to a pediatric oscillator as his belly was getting larger and larger. We didn’t know why. We were closing in on maximum settings on the oscillator, and surgery finally decided to open him back up to check for perforations. They opened him up, perforating his bowel in the process because he was so pressurized, when our surgeon was opening him she couldn’t pull away fast enough, but then after repairing that we didn’t find any bad bowel, but 500ml of whiteish fluid inside of his abdomen. We cleared that out, placed him in a silo and let him rest. The next day he had filled his silo with fluid, and we had to do a washout to get that taken care of, the next day we learned that the fluid was actually lipids and TPN. We learned that his PICC line had somehow displaced and was dumping our meds into his abdomen and not his vessels. So we had to go back in to remove that and make sure he wasn’t bleeding internally. We have had two more washouts since for other reasons. Just feels like the worst luck in the world, on top of having the worst luck in the world for having CHI as our diagnosis and losing our first son in 2021 due to being even smaller than our second. We are far from being out of the woods. Still not closed. I just feel like I needed to share this so that we could get some additional prayers and well wishes as we continue to watch our LO fight for his life. We are hopeful we can close him tomorrow, but we won’t know until then. We just want this to end. We want our LO to continue to trend in the correct ways, but know that only time will tell. via /r/NICUParents https://ift.tt/3actU5r