32+5 weeks now 43+2.. seeking advice
I had a slightly abnormal pregnancy, 2 Vessel cord, possible thrombus in the umbilical vein, and then a reversal of the ductus venosus that resulted in an urgent c-section at 32+5. Fast forward 2.5 months, we recieved genetic results back that revealed he has a rare chromosomal anomaly; one copy of chromosome 10, a small piece from the beginning of the chromosome is missing (called a 10p15.3 microdeletion), and a piece from the end of the chromosome is duplicated (called a 10q26 duplication, or distal 10q duplication).
He has a plethora of abnormalities that are mostly minor. Hypospadius, incomplete foreskin, wide nipples, pectus excavatum, syndactyly toes on both feet, micrognathia, high palate, bifid uvula (just to name a few).
He just had surgery to correct his micrognathia (small jaw) because he’s been on respiratory support since he was born. He had a mandibular displacement osteogenesis, and was moved forward 12mm to move his tongue forward and open his airway.
We’ve been in the waiting limbo for so long. We’ve been dealing with pretty severe diaper rash, weaning off morphine, gaining weight too fast, having edema episodes. I guess I’m in search of anyone else with any similar NICU stories, or any helpful words of advice. We’re 74 days and counting in this journey. We did move to 3L on the vapotherm and will have a swallow study this week; and hopefully learning how to feed. Please tell me things that have helped your sanity 😭