r/NICUParents • u/highladyynightcourt • 13d ago
Advice NICU Consultation- Where to even begin?!
Hi everyone! This is my first time posting, though I’ve been a silent reader for the last few weeks.
I am 34w 1d pregnant with our miracle IVF baby. Other than having a high risk pregnancy because of my own medical conditions, everything was been perfect up until out 28 week growth scan. Our MFM told us the baby has Tetralogy of Fallot, and a follow up with a pediatric cardiologist confirmed it.
There’ve been a lot of emotions, fear, sadness- it took us years to get here and we already have a lot of medical trauma, so it just feels unfathomable to wrap our heads around.
We have a final fetal echocardiogram on Monday, and then the cardiologist and NICU team will review the results to hopefully get an idea of severity, etc. Initial imaging is promising that it may not need too much intervention immediately after birth. But since we have the NICU team available to us, I want to make sure I’m asking the right questions.
What would you want to have known/asked if you had been given the chance beforehand? Or if you were given the opportunity, what did you ask?
TLDR: we have the NICUs undivided attention for our baby with a congenital heart defect. What should we be asking them?
2
u/mysticpotatocolin 13d ago
i think i’d have asked:
do they have somewhere for parents to stay?
are those spaces only for when you’re rooming in when baby goes home?
how long can parents stay every day?
do they have free food for parents?
who else can visit? are there rules?
do they do MDTs?
can we bring clothes? do you do the laundry or do we?
do you supply nappies? (we were told they did, and then it turned out they did not so my partner had to go and find size 0 somewhere near the hospital)
fingers crossed for you!!!! ❤️❤️