They called us in for the conversation we very NICU parent dreads

[hugan]

@szilvia I’m so sorry you’re going through this. I agree with everyone else here though, trust your gut.
My friend, halfway through their NICU stay, was told that her 29 weeker was likely not going to make it after multiple complications happened… but guess whose a thriving 7 month old!
She pushed, asked questions and advocated for her baby. She had two great core nurses who supported her throughout their journey too. The medical team has the medical knowledge, but you know your baby best.

 

[szilvia]

@hugan I love these stories! Thank you!

 

[dahager3049]

@szilvia What is the prognosis if you don’t mind sharing, I’m going through something similar with my 9 day old with significant brain bleeding causing damage to her left hemisphere, the drs state poor quality of life and she will have long term effects if she survives. I’m keeping hope up and not going to end her care. Prayers to you and your family! I’m here to support you if you need someone to talk to

 

[szilvia]

@dahager3049 No one has really said! I think it’s still too early to say, so we’re just trying to give her every possible chance at a good life.

Everyone says both here and in our NICU that baby brains can do amazing things. I hope you and your baby have better days ahead.

 

[dahager3049]

@szilvia Same I don’t have an actual diagnosis but brain stem is injured. We’re also trying to keep with the treatment for as long as possible.

 

[szilvia]

@dahager3049 We’ll have to stay in touch then. It’s hard to find info on brain stem injury. What gestation was your baby born at?

 

[dahager3049]

@szilvia Full term 39 weeks

 

[whit1979]

@szilvia Currently in a very similar situation.I got told such bad news and outcomes regarding my babies hie diagnosis but when I see my baby he’s responding and recovering so it makes me feel like I’m delusional because they say otherwise based off his mri. It feels like gaslighting

 

[szilvia]

@whit1979 I wish I had something more encouraging to say, but I think at this point in my daughter’s journey we just so desperately wanted to see her responding and improving. Eventually it became clear to us that she wasn’t ever going to “catch up.” I’ve made some other posts about her, feel free to read more about her. We made the decision to switch to comfort care and we know that it was the right thing. I miss her so much.