I just noticed this forum for the first time tonight, even though I've been posting on the site for a long time. I'm glad I did, because I've been needing a place to vent a little and hope that it will be okay to do it here. My son, Josiah, has Trisomy 13. He's been in the NICU now for six weeks. He has actually done so much better than the doctors expected him to do at the beginning, and we came very, very close to bringing him home, but he developed an infection that has made many of the problems that he already had much worse. I won't go into all the details here, but his lungs are starting to fail. He is requiring more and more oxygen and has had several episodes of apnea. Just a few days ago, he stopped breathing for a full ten minutes. His nurse was finally able to bring him back, and we are so thankful for that because we have had more time to spend with him. Every minute is really an amazing gift. But I know that he dying, whether it happens quickly in another similar episode or slowly as his lungs stop taking in the oxygen.
Because he is still with us, I don't feel like I can join up on any of the message boards that I have found for families who have already lost their children, but I am kind of already in the grieving process because I know what is coming. We are being face with many decisions right now too that are very difficult. My husband and I don't really feel like we can talk to anyone about these decisions (other than the doctors and God!) We have already agreed that Josiah won't be put back on the ventilator as it would really only prolong the dying process. We were asked if we would want to put a time limit on attempts at resuscitation, but we decided to leave it up to the discretion of the doctors and nurses because we trust their judgement. Our biggest decision now is whether or not we want to bring him home. Our first thought was that it was what we really wanted, but we aren't so sure now. We are afraid that putting him onto a low-flow oxygen (which is all we would be able to have at home) would make him more uncomfortable. We are afraid that he might stop breathing in the car on the way home and die on the side of the road somewhere. We are afraid that having him die at home might be traumatic for our other children if they happen to witness it. We are afraid that we will forever look at our home forever more as "the place where our son died" instead of a happy place full of good memories of our other kids. I'm already having a hard enough time even looking at the closed door to the nursery that he's never been in. I worked so hard on that room, painting, decorating, sewing bedding and curtains. All of the wool diaper covers I crocheted are sitting on the changing table, and it's all just awful to look at. I only go in there if I absolutely have to get a blanket or outfit for him, but it's almost physically painful. I have no idea what I will do with the things and the room or how I will deal with it when he's gone.
I'm sorry I've gone on and on here, but I just needed to unload a little. I have a caring bridge site where I share all of the information about Josiah and how he's doing, but I'm just not comfortable sharing anything much about my own grief. I'm fairly emotionally guarded by nature, but I guess when this much emotion builds up, even I need to let some of it out somewhere. Thank you so much for letting me do it here (and for reading, if you made it all the way through : )
Hugs and prayers to all of the other hurting women on here.
Gayle, mom to Reagan and Ryan, 09/15/03, Cade, 12/08/05 and sweet Josiah, 05/23/10-07/16/10