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What It Means To Be a NICU Parent 

I turned 30 this year. With that, it seems that everyone I know is pregnant, just had a child or is trying to conceive.   About two weeks ago, a friend of mine gave birth to her second child.  They knew immediately that something was wrong. After multiple tests and sleepless nights, they discovered their little boy had cystic fibrosis. It was devastating news to find out that their child would need daily treatments for the rest of his life.  She lives in Texas and has been chronicling her journey in her own blog for her friends across the country.

Every day I read her blog to get a little insight to what it means to have a 2-year-old at home and a 12-day-old in a hospital, 30 minutes away.  She and her husband have been so generous to allow us a peek into their world.  They recently wrote about what it means to be a NICU parent.  I thought it was so insightful both for parents who have had to be a NICU parent and for those of us who have never had a child. Below is an excerpt from her blog with names changed...

We have become NICU parents... Nobody gave us a crash course. We have just learned on the job. And it began right after our son was born and immediately rushed into intensive care.

Here are some of the things we have learned about what it means to be a NICU parent:

We don't need identification to come to the NICU. Everybody just seems to know who we are.
Since Day 1, we walked through the security doors no questions asked. Everyone seems just to know us in the NICU (and somehow knew us before we knew them) so we don't have to ask for permission to get through the security doors. When they see us, they make sure we have access to go through.

Visiting hours are 24/7.
This is one of the most wonderful things about the NICU. We can visit our little one at any time of the day or night. If we wake up in the middle of the night and want to see our man, we can go to the hospital to visit with him.

We can call the doctors or nurses at any time to discuss our baby’s care.
The doctors typically call or come find us in the hospital every other day, if not daily to discuss our baby’s care. They are patient as we ask questions and they are more than willing to explain anything to us. If we are ever concerned about his care (such as the other night when we thought he might be in pain and need more pain medication), we can simply call them up to discuss. We've never felt so powerful! :) The doctors truly make us feel part of the team working to get him better.

We have to scrub up every time we see our boy.
The NICU is a sterile enviroment - and for good reason. Each time we come in to the NICU, we have to take off our jewelry (which is why we have stopped wearing any), scrub up to our elbows with soap, and put on a hopsital gown. Since most people, including the doctors, are walking in and out of the NICU all day, few people ever tie the back to their hospital gown. So, it's common to see people walking around in hospital gowns but notice their clothes peeking out of the back.

We thought hubby was getting his PhD in Religion but it looks like we're both getting a degree in Medical Terminology.
Ileostomy, malrotation, infra-red spectrometer, and meconium peritonitis are all new words we did not know a week ago. We still don't know how to pronounce cannula. But we have become very familiar with these words and learned what they mean for our boy. Believe us, we now know waaay more about the intestines than we ever thought we wanted to know!

Holding times are 8 o'clock, 12 o'clock, and 4 o'clock.
This has been pretty disappointing - to think we have regulated times we can hold our baby. This is when we can feel our baby doesn't belong to us. But, it's for his best care. The reason his physicians/nurses have set this up is because they want to make sure he has time to sleep throughout the day. The reality is that between the nurses having to take vitals, the surgeon residents needing to mess with his ileostomy, the respiratory therapist having to give him treatments, the doctors wanting to examine him and mom and dad wanting to hold him, he could potentially go all day getting no rest at all.

The nurses know our son better than we do.
This is very hard for us, especially me. Because we don't understand all the tubes and because we aren't with our son all day, we don't always know why he's unhappy or how to best comfort him. We appreciate the nurses who love and care for him throughout the day. But it is terribly disappointing to see a stranger be able to calm your son in a way we feel incapable of doing. This is the process of getting to know our son - something that we will continue to do. But it's still one of the hardest things about having a baby in the NICU.

 

Other Neonatal Intensive Care Unit (NICU) Stories
 
carson and kellen, nicu and fci graduates from ssm cardinal glennon in st. louis

Carson and Kellen: From NICU to all things "boy"

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