Hello. My daughter has PRS. We had to have surgury at 8 days, she couldn't breath or eat without tubes. We had the internal distraction osteogenesis procedue done. So no having a trach or a G-tube. You can't tell she has had any surgury apperance wise.
Other people will be scared to hold her, but mostly because they think they will hurt her in some way. My mother who has had 4 of her own and 7 grand kids was scared to hold my daughter at first. But you just have to assure them that if you hold her straight up, she'll be just just fine.
The hard part was not being there with her at the hospital all the time. My wife would get a ride to the hospital in the morning and stay all day, and when I would get off of work I would go up there and stay till about 2am. We would then leave and do it over and over. We each got about 4 hours of sleep a day for the first month she was in the NICU at Wolfsons Childrens Hospital. Finally the Head of the NICU came over to talk to us, and promised if we wento home early one night the baby was in good hands, she said "Your baby's going to be okay tonight, go home and take care of you." We hadn't thought about it, but neither one of us could remember when we ate, the couple hours we were at home was only restless sleep and rushing out the door. This is our first baby, we were scared. It was rough.
After we brought her home she had parts of the extraction device (metal rods) sticking out behind her ears, and of course some little scars (now bearly noticable at 6 months.) Alot of people have never heard of PRS, and they had no idea what to think of her. We had to keep her on a monitor pretty much 24/7, unless we we holding her and she was awake. People would always ask what it waa for, I would tell them its a battery charger, and the wind up thingy in her back was broke, they would just look at me funny. I would laugh and tell them we have to have it because she'll just stop breathing. Then they would give her the poor baby look, one of sympathy not of disgust. The hard part of having the monitor was when they take her off of it. Yeah, that was tough for me. When she first came home the monitor went off all the time, of course you run to her to make sure shes breathing, and it gives you a pretty big scare. You eventually get to a point where you wait for it to beep a couple time and she will start breathing again, but if it beeps more than three time you run to check on her. Towards the end of us having the monitor, when she was sleeping in her crib, you could just look at her, and if she seemed really still you could just look at the monitor and know she's breathing. Now when its gone, you will probably check her alot when she is sleeping, that's normal. I still do.
My wife was afriad she did something to cause our baby to have PRS. We don't drink, smoke, use drugs, really anything, we're kind of boring people. She followed all of the advice from doctors, just a really perfect pregnant mommy. It just happens sometimes for no reason at all.
Something I had to tell my wife, which is very, very important. "It is not your fault. You have done nothing wrong. This just happens. You are Perfect. This baby is perfect."
Poor baby. I hope it doesn't affect how they interpret the results.
