My Preemie Purple Heart...

I met Grayson and his mom, Julie, the first day that I came back from my maternity leave in 2012. It was a weekend, I was just getting acquainted with all of my patients during NICU rounds, and most of the morning I wished I could still be home with my own new baby, Claire.

Our unit clerk alerted me that Grayson and his mom were sitting in a room on the pediatrics unit and needed my help right away.  But I had no idea who Grayson was!!!

One of the NICU nurses who I was working with that day filled me in on the basics: Grayson had been born at 27 weeks gestation (the same week in March I gave birth to Claire) and had just been discharged home from our NICU a few days earlier. She mentioned that he had been sent home in room air, but with a nasal cannula and home oxygen "just in case" he needed it at home. He had a history of BPD, which is a lung problem that affects preemies, and, in some cases, requires being on oxygen after NICU discharge.

As I walked into their room I saw a beautiful woman, who looked too young to even be a mom, holding a baby and uncontrollably sobbing.  I introduced myself, examined Grayson and checked his pulse ox, and learned that he had not been feeding well at home and had periods when he seemed to be breathing too quickly. His mom was unsure whether or not she was supposed to put him on oxygen at home so had brought him in to be checked out. After a chest x-ray was done I made the decision to put him back in oxygen, on a low flow cannula. Julie continued to cry as I explained why we needed to resume oxygen and my heart broke open for her. I called Grayson's pediatrician to give her an update and to make sure he could be seen by her the next morning, and I sat with Julie and Grayson until we were all convinced that he was stable enough on oxygen to go home (and not need to be readmitted to our NICU).

Several months later Grayson, Julie, and his dad came to see me for his 4 month corrected age NICU follow-up visit. All seemed well--he was off of oxygen and thriving. His mom was so happy by his progress that she was glowing during the visit. I ran into Grayson's dad multiple times the next year or so and every time I saw him around town he would share photos and tell me about how well Grayson and Julie were doing.  

The next time I saw Grayson in follow up he was 14 months corrected age. His parents assured me that he was doing very well, crawling and scooting around, outside of having developed "tightness" in his right ankle a few months earlier. On exam his right lower extremity was indeed tight, so much so that I was pretty sure that he was going to eventually receive a diagnosis of cerebral palsy (CP). I broke the news to his parents and Julie started to weep, much like she had the first time I met her.  

We went through all of the normal questions that parents ask in situations like this: "Will he be able to walk?" and "Will he be able to play sports?" and "Will this cause him pain? and "Will he have a normal life?"  After they left I started to cry too...

There was then a pretty long period of time when I did not see Grayson or his family but I thought of them often. The neurologist I referred him to gave Grayson a formal diagnosis of CP later that year and kept me updated on his neurology visits and plan of care.

Our next door neighbors moved to Chicago in the fall of 2014 but assured us that we were going to love the young family who was moving into their home. We learned that they had two children, a daughter who was the same age as one of our older children, and a son who was the same age as Claire.

Since I am writing this story about Grayson and his family, you can probably figure out who our new neighbors were!

At first I was very anxious to be their neighbor, as I felt like I was the doctor who always gave them bad news, and I worried that they would associate me with the trauma of their NICU experience. And this did happen at first...but within a few months Julie and I got to know each other much better and became dear friends.

It was from conversations with Julie that I truly learned about what it can feel like to be a NICU mom, especially in the first few weeks after delivery:

-the continued questioning and racking your brain to try to figure out why you went into labor prematurely

-the fear that every time the phone rings when you're not in the NICU that it's someone calling to give you bad news.  

-the agony of not being able to hold and cuddle your own baby in those first days/weeks of life until he or she is stable enough for kangaroo care to start

-what it feels like to want to throw your breast pump against the wall and smash it into a million pieces

-how helpless and scared you feel when you watch alarms go off because your baby stops breathing

I learned that NICU moms are the bravest and most dedicated and caring human beings on the planet. Julie shared that there were days that she dreaded having to enter the NICU, but went in and smiled and talked to everyone anyways because she wanted to help make other NICU moms' experiences better. She felt it was her responsibility to be upbeat and make others happy. It wasn't until the day I first met her, when Grayson almost had to be re-admitted, that she could no longer keep up the cheerful facade.

Before we moved away in 2015 we bought each other matching Preemie Purple Heart pendants. Julie wears hers on a chain around her neck and I wear mine on my ID badge. This way I always have a reminder of Grayson, Julie, and all of the other NICU babies and parents I have connected with through the years and keep in my heart.

P.S. In case you are wondering, Grayson is doing great. He just finished kindergarten, and his favorite things to do are tell jokes, play outside with his friends, and annoy his older sister!


Dr. Jessica Madden