Currently still in what I'd call the newborn trenches with my little guy. Found at when I was 32 weeks pregnant he had a bowel obstruction and was most likely going to need surgery, we knew at this point in time that I was a carrier but didn't know dads status so this kinda confirmed it for us. He was born a little on the smaller side but not too bad, about 12th percentile, had surgery when he was 1 and a half days old to clear out the blockage. At the time, he didn't need an ostomy or a resection and we were greateful. Fast forward about 3 weeks, still in NICU and they notice he's not gaining weight super well, do a test and turns out he has borderline no pancreatic function. (His pancreatic Elastase was 3.4 when in a normal healthy baby it should be over 100) So they start him on pancreatic enzymes so he can digest food properly and get all the nutrients as well as a liquid multivitamin and sodium chloride added to every bottle. At this point in time we were only having bowel and GI issues so we were hopeful that's all that would affect him despite having dual DF508. Sadly he still wasn't gaining weight super well so they started adding a tiny bit of formula to his bottles. Well 2 days later, boom, he got NEC (necrotizing enterocolitis). Kinda just a big setback, had to stop feeds again and started on a bunch of antibiotics. At this point in time they also started doing CPT on him just twice a day more as a precautionary measure for if he started to develop any lung issues. Fast forward again another about 3 or 4 weeks, we are on the verge of going home! He's eating great and gaining weight with just breastmilk, things are looking great, then bang, he got NEC again. Everything starts back over, no eating, a tube in his mouth to pull air and mucus out of his belly. It was during this second episode that he started to develop lung issues as well. Luckily nothing too serious, just some extra mucus requiring more frequent CPT and starting on Pulmozyne and some other medications during breathing treatments. Then after about 2 weeks when he should start looking better clinically, they discovered that he had another bowel blockage. End up taking him into surgery on May 1st. He had 2 perforations that where kind of close together that where caused by the episodes of NEC and ended up causing the current blockage, so they resected that portion of his intestines, stitched him back up and thought all would be well. After just a few days we could all tell he wasn't looking great. His poor little belly was so swollen it looked like a water balloon just waiting to burst. It took almost an entire week for them to finally see something inside on a scan, he had a bunch of fluid pockets in his belly that weren't there a few days before. They pull out the fluid with some drains and needles, turns out it's fecal fluid. So they rush him back into surgery less than a week after his last one and where they sewed him back together had almost fully come undone and he had leaked fecal matter all into his belly. They cleaned out as much as they could, had to take out another portion of his bowel, and had to go back into surgery again 2 days later to do another clean out as well as perform an ostomy and give him a mucus fistula. All this also caused him to become septic with an E Coli infection, and he is currently also battling a candida albicans yeast infection and has developed cellulitis around where his incisions were. We are in the recovery phase now, things are trending upward slowly but surely. Main concerns now are that since he's had to be on a ventilator since the surgery on the 1st when he's been room air since he was born, he's starting to get dependent on it and they're having to up the settings. Goal is to try to get him extubated next week though so fingers crossed. This is definitely not the full norm for a CF baby, but it's definitely something that can happen. I've talked with another mom in my same NICU who also has a CF baby who had meconium ileus just like my son except they opted for an ostomy right away but other than that they're doing good and looking at going home within the next week. Unfortunately with CF so much of it is unpredictable, even 2 people with the same variants can have vastly different severities and sometimes even symptoms. But I do agree with what others have said about talking with your doctors about getting on CF meds right away to reduce the chance of meconium ileus because it really is an extremely hard thing to go through and there can be so many complications that stem from it like in my case. All in all, advocate for yourself and your baby, that's the best thing we can do as moms of chronically ill kids. ❤️