Very high risk my story

Where to begin... Okay so about a month ago we found out the most life altering news. Our baby has GASTROSCHISIS for whos who have no effing idea what that is (i had no idea until 4 weeks ago) it's a birth defect of the abdomen wall nex to the belly button. My sons intestines are growing outside of his body and he will neeed a surgery IMMEDIATELY after he is born to fix this problem. now people are probably wondering how this happend? What caused it? Ive been to 5 doctors within this month now and to sum it up they have no idea it just happens i did not cause it at all and its honestly pretty rare BUT 99% treatable there are downsides though as in the NICU stay and not being able to hold my son and driving an hour away everyday to see him and being scared shitless because i cant be with him every second to see how he is doing.... This js very scary to me im so nervous and stressed out... I have the best husband by myside thank god. But every day its hard to be excited about buying baby things....seeing as in he can be in the hospital for up to 4 months (praying its only up to 1 month) its just like honestly im to stressed to be happy i love to feel him kick and talk to him and plan stuff but im so stressed. ADVICE TO FTM: Get the bloodwork done for neruo tube defect and downs sydnrome because this is how i found out first my blood work came back positive for neruo tube defect so i made a gentics appt for a special 2d ultrasound wich is how i found out what he had so thank god for findind out when i did. I guess just talking to other first time moms to calm me nerves would help or high risk mummies i have to see 5 different doctors so thats just very stressful. Thanks for reading my story.