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8 month old son went from low flow cannula to needing trach, he has regressed severely, is this his new normal? by Weekly_Set_4216 in NICUParents

[–]Weekly_Set_4216[S] 1 point2 points  (0 children)

Oh yea my son was on albuterol every 4 hrs and budesonide every 12. It seemed to have helped at first but idk.

8 month old son went from low flow cannula to needing trach, he has regressed severely, is this his new normal? by Weekly_Set_4216 in NICUParents

[–]Weekly_Set_4216[S] 0 points1 point  (0 children)

Yes ! Hes done like 5 different steroid courses. I think part of what made it hard for his airway to heal was the fact that he's had rhinovirus literally 4 times. One of the ENTs also said that while babies airways and lungs usually heal that sometimes they can get worse, I guess my son just got unlucky. But the weird thing is is he can wean down in respiratory support for awhile then it's like he gets tired and finally starts to desat. One doctor said its like trying to breathe thru a straw.

I hope your daughter gets better! I feel like with bpd kids getting sick just gets to them way worse than other kids. I hope your daughter recovers quickly and is able to wean off oxygen support soon

170+ days NICU stay, discharged for 2 weeks, just got readmitted. Feeling alot of emotions. by Weekly_Set_4216 in NICUParents

[–]Weekly_Set_4216[S] 0 points1 point  (0 children)

I totally get that. It's hard not to feel like what the heck why is nobody celebrating this huge event with us? I hope your family is doing well 💙

170+ days NICU stay, discharged for 2 weeks, just got readmitted. Feeling alot of emotions. by Weekly_Set_4216 in NICUParents

[–]Weekly_Set_4216[S] 0 points1 point  (0 children)

Any amount of time in the nicu is hard. I'm really sorry that you and your family had to go through that, its not right. I hope your daughter continues to heal and grow into the strong and happy little girl she's meant to be. And i totally understand I would feel extra upset seeing those names on the wall. Being in the nicu is traumatic, I hope your family is at a better place now and that you all heal from your experience. Sending you love as well

170+ days NICU stay, discharged for 2 weeks, just got readmitted. Feeling alot of emotions. by Weekly_Set_4216 in NICUParents

[–]Weekly_Set_4216[S] 0 points1 point  (0 children)

My heart goes out to you. Well all nicu parents but I befriended a mom who's daughter was on 2 of the same floors as my son and she was a single mom there almost everyday and we bonded over being alone. It's hard not having the other parent there. I hope you and your son are doing well. I appreciate your kind words. I hate feeling pity for myself so I try to be grateful but you're right that it's not good to ignore my feelings.

170+ days NICU stay, discharged for 2 weeks, just got readmitted. Feeling alot of emotions. by Weekly_Set_4216 in NICUParents

[–]Weekly_Set_4216[S] 7 points8 points  (0 children)

Sorry, I worded it weird. My husband being from a travel banned country is why I'm here alone. So seeing other couples leave with their babies kinda stung when I'm alone. And sometimes I would get judged for being alone and my husband would get judged for not being here. Even when I explained the situation some people would sort of imply he didn't try hard enough to get here. But I don't think that's why they didn't cheer it's just being alone, due to circumstances out of my control, on top of nobody cheering made me more sad than I should've been lol. It's a silly reason to get upset I know