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Preemies
Neurologic issues...trouble coping
Bobby has been upset and inconsolable a lot of the time over the past few days to the point where he's really not sleeping. The docs are considering that he may be in pain because of his inguinal hernias but are nervous to do the surgery earlier than a week before he's ready to go home because he will likely have issues at this point getting back off of the vent and he's just gotten to high flow. They're trying to see if the hernias are the issue by giving tylenol and, if needed, morphine. But that's not what's really bothering me today...
During rounds, one of the residents mentioned the possibility that Bobby's inconsolable nature could be neurological. It seems they're thinking that it's possible that Bobby's long ventilation and high powered, high frequency settings and low O2Sats could have caused him severe brain issues resulting in lack of control of emotions, function, etc. We've known in our minds that this was a possibiility...that Bobby would be mentally handicapped...but I guess my heart always told me it wasn't possible...that as much as I loved him and really and truly wanted him that this just wasn't possible. That my love could somehow heal him if there was damage that had been done during his respiratory failure.
I'm sitting in a quiet hallway in the hospital bawling and my heart is breaking.
I want a normal child...if that's not possible, I want a child who isn't constantly distressed and experiencing neuropathic pain.
We won't know any of these answers until later...a brain scan wouldn't really show anything at this point. But if Bobby's going to be in pain for the rest of his life and in distress, as horrible as it sounds, I'd almost rather he had passed peacefully on that horrid night 3 months ago.
Maybe this makes me a horrible Mom...I know I'm jumping the gun, but I've just been particularly emotional today.
I don't know why I'm even writing this...maybe to cast a line and see if anyone was told anything similar at any point and has tips on how to cope or has a ray of hope they could cast my way.
I feel so deflated and broken.
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Re: Neurologic issues...trouble coping
This was one of my main fears while DD was in the NICU. I was constantly worried that she would be mentally handicapped or have neurological problems. Like Bobby, she was on a vent for a very long time (6 weeks) and then on the canula until 2 weeks before she came home. She had constant desats and for several weeks she was on O2 set between 70% and 100%. I had all the same feelings that you are having. One saving grace was the fact that I was seeing a therapist every 2 weeks while she was in the hospital. The therapist really helped me cope with all the overwhelming feelings that I was having. You are NOT a horrible mom!!!!!! You love your son and don't want to see him suffer. That is totally understandable. I was afraid to love my DD too much because I was so afraid to loose her..
I can let you know that after everything we went through in the NICU, my DD is doing great. She is pulling herself up and trying to walk and is a mean crawler. She also had no residual breathing problems from being on the vent so long. I know that she may have som delays later down the road, but I would never change my experience with her for anything. She is such a joy to have and makes my life and my whole familys life sooooo much better! Good luck and know that you are in my thoughts and prayers!
I'm so sorry you're having such a rough day!
I'm going to share something I'm not proud of and it's deeply personal in the hopes it helps. AFTER Evan came home things were hard, for a long time. On a particularly bad night for me I was feeling SO low. I had some thoughts I'm not proud of. One was that it might have been better if he hadn't made it. The other was that maybe I didn't want to do this any more, and maybe he'd be better with someone else. Maybe we should give him up for adoption. I went through a couple of days where if he cried, it didn't bother me. I knew that was wrong, but it was what it was. Thankfully my husband is around too, and if one of is isn't doing so great, the other steps it up. You're just going through something so incredibly hard right now, it affects a person deeply. I wish I could pull you up out of it so badly.
About the comment about a neurological problem....maybe it's a possibility, but like you said, it's WAY to soon to tell. Evan had several doctors telling us things like "you have to expect some problems with a 24 weeker". NO I do NOT, have to expect problems! I will take what comes as it may, but I do NOT have to expect problems, and they have been wrong about him on many occasions. My brother has Cerebral Palsy, my mother was told he would never eat,walk, talk, crawl etc etc. He's 26 now has a girl friend, his own place, and is a financial worker for the county. He was tube fed for 2.5 yrs, didn't walk till he was 4, had several surgeries on his legs growing up, and more, but he made it. So, even IF Bobby has issues to over come from all of this, he can still have a normal and productive life, with you and your husband there fighting and advocating for him.
It's a horrible thing to lose hope. You really do need it.
Have you tried Kangaroo time with him recently?