I've popped on here just a couple of times before. My son, Josiah, has Trisomy 13. He has been in the NICU for a month since he was born, but we're going through the discharge process this week and getting ready to take him home, which is really exciting and really terrifying all at the same time! I've been learning how to insert his g-tube and manage his feeding, how to suction him, how to handle his oxygen, and things like that. The tube was definitely the worst, mainly because he hates having it put in so much, but I think I've got the hang of it. I'm making my mom learn how to do it too, because my DH can't handle it, and I don't want to be the only one who knows how!
We are really lucky to have a wonderful pediatric hospice place in the area, and I'm meeting with someone from there tomorrow.
Overall right now, Josiah has been doing pretty well, although yesterday and today he has had a little more trouble maintaining his oxygen saturation and has had a few episodes of bradycardia, all of which makes me even more nervous about being "left on my own" with him. I will room in at the hospital with him for at least one night before he comes home, so that will help. We'll be in our own little room, but the nurses in the NICU will still be around the corner looking at his monitors.
So once we get home, I may end up with some questions for some of you who have dealt with similar equipment at home! I'm hoping that I can remember how to use it all properly!
The bottom line is that we're really thankful that he is coming home. My other three kids are unbelievably excited. It's been very hard on them not getting to see him every day and, of course, having me running off to the hospital all of the time. It's kind of a miracle that we are even at this point, because when he was three days old and not doing well we were told that he only had a few days left at best! The time we've spent with him since then has been amazing, but I know the time at home will be the most special.
Gayle, mom to Reagan and Ryan, 09/15/03, Cade, 12/08/05 and sweet Josiah, 05/23/10-07/16/10