The morning after our marathon appointment, I received a call from Nurse S.

"I just want to talk with you about yesterday."

She wasn't calling to schedule appointments, answer questions, or give more information. She was calling to check in and see how we were feeling after having some time to process the marathon.

Have I mentioned how wonderful she is? Because she's SUPER wonderful.

I explained that while we already knew a lot of the information we were being told, there was also quite a bit that we didn't. Learning about the additional concerns on top of everything else was really overwhelming.

Nurse S. told me that the sonographer had said to her after our appointment, "I can't imagine finding something new every time you come in for an ultrasound."

Ok, so even the medical team knew that yesterday sucked.

The fact that Nurse S. is on the medical team and is 100% aware of Norah's current laundry list of concerns, and still has so much empathy for us was unbelievably relieving.

Nurse S. brought up how it can be really hard to have multiple doctors – each one learning your case as they go. They do try to make sure everyone is up to speed, but sometimes not everything gets communicated – resulting in rehashing issues we thought were already decided, being retold the same scary hypothetical outcomes when we're already fully aware of the severity of the situation, and having to reiterate our stance on her care time and time again.

We also discussed how the medical team is navigating a delicate balance of making sure we're fully informed of the situation, while at the same time trying to avoid overloading us with ultimately unhelpful information.

Nurse S. is truly fighting for us to be able to enjoy the remainder of the pregnancy. She knows we are fully aware of the severity of the situation and want to make decisions based on fact, not hypotheticals - which means we'll have to wait until Norah's here and shows her cards. She doesn't want us getting unnecessarily stressed (both for the impact it has on us, but also on the pregnancy) by testing or information that may or may not be helpful or accurate once Norah is born.

Having a true advocate on our medical team, someone seriously going to bat for us, is incredible. There aren't words to describe how vital her support is to our ability to handle this.

Nurse S. decided to make some adjustments to what was supposed to be our second marathon – she removed the surgical consults. We had received a pretty comprehensive overview from the neonatologist about what to expect from surgery, and Nurse S. felt that it would just be unnecessary time and information at this point. This would also shorten our visit by a few hours.

My response? A massive sigh of relief and a thank you which didn't even skim the surface of my appreciation.

Our conversation lasted for over half an hour.
Nurses truly are angels.

Continue the story > #12 // Emails and Grey Hair