u/WattleBud

I think that’s such a great way of putting it - that NICU sucks even when it’s perfect. Nobody wants to be in there, rightfully so! I knew it would be hard going into it, but I didn’t expect that it would be additionally difficult due to interactions and decisions that really did not need to happen. They weren’t evidence based or necessary for my child’s wellbeing.

Yeah exactly, it’s just too much work when you are there to bond with your child and care for them the best you can. Also if people are making hurtful comments, I wasn’t convinced that complaining would change anything.

Also gosh, that’s not good about your tourniquet story…

It was really hard and honestly, therapy wise I have done great work on the issues around my daughter’s start in life being in NICU (which was obviously really hard)… but the sticking point that remains is all the issues I’ve noted above

I am also a non-complainer.. Especially during these times it’s like it was all too hard anyway that adding the additional labour of that just felt too difficult. But wow, what I experienced has really rocked me. I can’t describe how painful it was.

Honestly that’s the right term for it. There was so much shame involved. It constantly felt like a head spin too.

Every day I was told conflicting information on how I could or couldn’t care for her - all from how to feed, how to pump, when I could hold her, when I couldn’t, how to do care routines… the list goes on. I can’t remember how many times I was reprimanded for doing something that the nurse had told me I had to do only the previous day. It was extremely distressing as I only wanted to care for my child. I changed strategy and made sure to have a conversation with the nurse every morning about what their expectations were and what the day would look like. But even still, the same nurse would in the morning say something was ok and then in the afternoon would have changed their mind and said I couldn’t do it.

There were often long stretches where we had no nurse at all. They instead allowed a teenage volunteer to stay bedside of my child while she was at the hospital’s highest tier of NICU who questioned me about how many children I had or was going to have. I had multiple babies pass away before I had a child who made it to NICU. The teen also blocked my ability to change her nappy (I was given permission on this day to do her care routines at this particular time). There was no nurse supervising the interactions either.

It was just constantly hard, I could keep going.

Oh good lord. Why on Earth laugh to the parent about negligent practice? Sometimes I felt like because their patients are babies, their rights aren’t respected in the same way adult patients are.

I’m so sorry about going into labour after being told to go for a walk too! That sounds incredibly stressful.

Thank you for your kind comment x to be honest, it’s a good thing if our experience was out of the ordinary!

Yes! So similar! It was disturbing, especially since we are not sleep training people (not that I come with any judgment of people who are!) - it was just ideally not going to be a philosophy that we applied.

I was worried she was weak or unwell but after multiple conversations with our doctor and weight checks we just roll with it and what her needs are at the time.

Hi there! My baby was the same way and born at a similar age!

If it helps they did start to show an interest in high contrast cards so I would put them up around the nappy change table.

Sometimes I would get so desperate for interactions that I would hold up the high contrast card right next to my face!

It just took time but now they are a total chatterbox.

Thanks so much for your comment - it was miserable! It was compounded unfortunately by getting paired next to a really unkind parent who either tried to drag me into drama or let off unwanted commentary about how I was choosing to parent. It was pretty unbearable.

Ah yes, bath trauma. Can relate to that too. Our nurse had never done one, did not know how to do it!

I’m so sorry about the phone incident that sounds terrifying. I remember the fear when my baby had a bad desat too… NICU is a unique trauma!

Thank you! I know, it’s a really weird double whammy grief at times! I hear stories where people talk about how awful NICU is (which it is - nobody wants to be there), but at least that they had tender moments with the staff that worked there etc. Unfortunately, I can say that our positive interactions were sadly not the majority.

It’s disappointing because we genuinely did have some incredibly smart and caring professionals care for our baby but they feel overshadowed by how horrendous some of our interactions were.

Australia unfortunately.