Navigating the NICU: The Unknown NICU (Neonatal Intensive Care Unit), I hadn't even known what that meant until my baby was in there. I had a sibling and one friend experience it in my teenage years and I still hadn't known a lot about it, only that their baby could not come home. Looking back on it, I wish I knew the right words to say to them in their time of need, but is there anything you can ever say during that time to make someone feel better?
AJ went straight from my womb into the NICU ward. He remained in neonatal intensive care unit for 4 months. He was born at Edwards Elmhurst Hospital then was transferred to UIC for a surgery, but first had to complete testing at Comer Children's Hospital. After testing he was transferred back to UIC for his surgery and once that was completed, I requested transfer back to Edwards due to the unsterile conditions at UIC.
It was particularly difficult at this time for a few reasons. One being I had 3 other children at home to care for and AJ being away meant I had to divide my time between home and the NICU. It was difficult to find a babysitter and my other kids always felt left out.
Secondly, I felt like I had no control over my child's care. I had to get used to walking into AJ's room and seeing that he was now on or off a monitor, starting a new medication or therapy technique, maybe seeing a new specialist, or being strolled down for a quick CT scan. This made it tremendously difficult to advocate when I barely even knew what was going on. I would literally have to spent 24 hours and 7 days with my child to stay in the loop.
Oh, and the most difficult reason of all, trust. I had to learn to trust someone just because they passed the NCLEX, wore scrubs, and called themselves a professional. I had to trust, they had the best interest of my child. Trust that they would do any procedure on AJ and things would be fine. Trust that they were not neglecting or abusing my child. Trust that there word to me, did in fact mean something.
At each hospital AJ went to I spent hours, days, and nights. To be there with my son, yes, but also to insure he was receiving individualized care based on his needs. I always was friendly to the staff and communicative. Through that transparency it allowed for a better understanding on both parties. These were not people unworthy of trust... they were just people of our community. They had children at home and pets that they loved, moms that they were caring for, wives, husbands, I mean you name it. I realized that the people that work in the NICU are ordinary people. In that moment I understood that I didn't need for them to love what they do, all I needed was for them to have compassion. Just basic human decency.
These nurses helped me during some of the toughest times in the NICU. I was having to deal with life threatening decisions for my son and these people, that I didn't even know, supported me and showed complete empathy. Because AJ's case was so rare, majority of the staff had never come across a child like him. It really felt like AJ was communicating with us, requiring us all to work together to figure out what it was he needed. There were questions we did not know about AJ's condition and I felt apart of the team when it came to finding answers.
The NICU was no longer a place of confinement or fear of the unknown. It was a temporary home for AJ. It was a place of comfort, love, knowledge, support, and awareness. Every time we traveled to a new hospital, it just meant he was that much closer to coming home. In the NICU, they work endlessly to ensure that AJ's diagnosis would not hinder him, but instead improve his chances at advancing past the life expectancy of a child with his condition while at home.
AJ came home from the NICU October 26, 2023. I really admired the love a lot of the staff had for AJ at Edwards Elmhurst and got them a gift with a note attached. I do not remember all it said, but in my diary, I have one of the many sheets I could not finish. It is incomplete, but I will share what I have.
"Thank you all so much for caring for AJ with such compassion, kindness, understanding, and patience. As we've grown to get to know AJ, he is not a easy go, easy come baby (haha). Each one of you have given me a piece of knowledge about his care that I can take with me and will continue to forever use. You have been my voice when I am lost for words. My..."
-Alexis
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