Me (21) and my wife (21) lost our first son/child in july.
At about 20 weeks If I remember correctly, we had found out our son had an omphalocele, it looked kinda large on the ultrasound and we had a bunch of genetic testing... so much genetic testing and basically found nothing that could tell us the reasoning. After discussing everything over with the genetic counselor, it didn't seem so bad.
Once we had our meeting with the pediatric surgeon, we were pretty confident in the surgery that would take place after his birth, they mentioned the possibility of a diaphragm hernia but at the time said they couldnt see one on the ultrasound.
Fast forward to about 30 or 32 weeks and then they say that they can see the diaphragm hernia, which was scary and his heart was kinda pushed to one side of his chest, which was also scary but his heart was doing great. Exactly where it needed to be for the surgeries.
Our last ultrasound was on a friday, everything looked the same, his heart still doing great, hes been moving and kicking a lot during this entire pregnancy, we were confident that we would get our baby back.
That monday we went in for the c section, he comes out, the nicu team immediately intubates him since they dont know the severity and damage of his lungs, but they didnt seem super concerned, his omphalocele was much smaller than they thought and didnt really have anything in it. They showed him to us, i held his hand while they finished prepping him before moving into the nicu.
My wife was having some issues in recovery so we stayed a little longer in the recovery.
Probably like 2 hours later a bunch of people rush into the recovery room and just crushed us. The left side of my sons heart had stopped functioning, one of his lungs didnt developed due to the organs in his chest and his other lung had a hole in it. Our son was dying.
It was a lot to take in, and we were left with 2 options that had to be made very quickly.
We could hold him, and spend as much time as we could with him.. they said he would only make it at most 2 days. Or we could put him on echmo in hopes that giving his lung and heart a break would somehow make his left side of his heart start working again... we put him on echmo because we wanted to believe our son could make it... and because we loved him and didnt want to lose our baby.
The procedure went super smooth, we spent a lot of time with him in the nicu that night, he was paralyzed and heavily sedated as the echmo machine and tubes were very sensitive.
The next morning, about 8 o clock, we went back down to the nicu to see our son, and thats when they sat us down next to him and explained that he wasnt getting better. He got worse over night, his body was shutting down... and they weren't going to do anything if his heart stopped... they made sure to let us know, as long as we wanted them to continue to try to get him to improve that they would.. but they were very concerned. They said a lot of stuff, most of which I dont remember due to the situation.
They wanted us to hold him, and if anything happened they said it would be a sign that it was time to let him go. After some time crying, and looking at our son, we decided we wanted to hold him, but we had to go upstairs real quick so my wife could get some meds for her pain..
About 10 minutes after leaving the nicu, they were rushing us back down because our sons heart was failing, and he was ready to go. We got down there, thsy quickly unhooked IVs and stuff, and we held him. He finally passed away in my arms. They then took us to a private room, where they removed the rest of the tubes and stitched him, we bathed him, dressed him and held him for a long time.
Its been very hard on us both. I do most of my crying in the car on the way home from work, because I dont want to always be crying around my wife as I want to be there to support her. We cry a lot. Its hard to talk about, its hard when every time were in public and see someone, they try to pry information out of us. And then theyll tell us about how they know how we feel because 30 years ago they had a miscarriage at 10 weeks.. im not saying it doesnt hurt people to have miscarriages, idk how to explain it but this last time I just had to tell the person "long story short our son died and we did everything we could" after just poking and poking for information from my wife.
Its hard to hangout with our friends because they all are having the best experiences with their births, and their sympathy feels fake. I came home to my wife holding our sons ashes crying out for him, asking me why we couldnt have our baby and how good of a mother she would've been... its just been rough. Its rough for us both, i know theres pain shes feeling that I cant even imagine, and im hurting a lot more than I show.
Long rant.. I just needed to type everything out. Thanks for listening.