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Preemies
New preemie/NICU mom and I am totally lost
Hi Ladies- Another preemie mom recommended this board and I am looking forward to "talking" to you all and learning from others experiences. I had my son at 30 weeks due to umbilical cord flow issues- I can never get it right- absent distolic flow- something like that. Less than 24 hours after he was born, he needed major gi surgery due to the fact that his colon had perforations and he was filling with air in his scrotum. They successfully removed a section of his colon and he has a stoma and ostomy bag which he will have til about 4/5 months. He recovered beautifully from his surgery and is doing great- breathing on his own, great bp and blood gases. He started on breastmilk this week and we have had a problem with that. He did well the first 36 hours, but since has been spitting it back. They call it bilious pooling which I understand is the breastmilk and bile just sit in his stomach then spill back up. The drs say he has slow peristolsis and they will just be persistant but I am so worried it is more and he is headed for another surgery. I am having a very hard time with his early birth and NICU stay. I feel like I don't know what I am supposed to do. I have a 22 month old at home that needs me also. I go tot he hospital to visit with him but I still need to be home and spend time with my LO. I feel guilty for her when I am there and guilty for him when I am home. How do I go about my life with him being in the hospital and not home? I am really having a hard time with this and it scares me that I still have weeks ahead of me. I am stressed to the limit. How do you get to a "comfortable" place in a situation like this? And has anyone had this problem with the early feeding and where did it lead?
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Re: New preemie/NICU mom and I am totally lost
I'm so sorry you've wound up on the NICU rollercoaster
Glad someone pointed you here, though. I don't know what I would have done without this board over the last year - the first few months (even after leaving NICU) were particularly difficult. I wish I could tell you that it will get easier or that NICU becomes less stressful, but...no matter how smoothly things are going it's hard in there. Some of the longest days are when you're told it's coming to an end. One of the nurses told me we were "on the launching pad to come home" but then it wound up being a month longer. There are a lot of moms on here who have had to go through several surgeries with their LO's and I'm sure they'll be good to lean on. DS main issue was brady/choke/feed stuff. We eventually came home on an apnea monitor for an additional four months. Time drags when you're in the thick of it so vent all you need - it will keep you sane - esp because we can all relate on some level.
Some of us put together a blog about NICU/preemie experiences. Maybe you'll find it comforting. There is a link to it in my siggy as well as a link you should forward to family/friends so that they can have a better idea on how to help you/your family. It must be hard on LO1.
I'm sorry you're having a hard time with all this. It's not easy. I'm sure it makes it worse since you have another LO at home. My best advice is to do the best you can. And take breaks if you need to.
My son Ryan had the same issue with feeding. It took him a month to be able to accept breastmilk continuously. Before that they would try and after a few feeding he would get the bilious pooling you mentioned. Eventually they gave him meds for gut motility. It seemed to work. I guess his digestive system just wasn't ready.
I'm so sorry you're going through this. I don't have any experience with the feeding issues, but I will say that the NICU stuff eventually become routine. Eventually, you just figure out a way to make it work. It isn't easy, but you find a way to do it because you have to. It's stressful and hard, but you'll manage through. I promise.
As for the guilt, I think it's always there. My son was our first, and, even after spending all day at the NICU, I'd still feel guilty when I left. I think it's almost unavoidable. Not that you SHOULD feel guilt, but you do.
Hang in there. Hang around here and ask as many questions as you need to. We've all been there in some capacity. HUGE HUGS to you.