May 6 – 12, 2018 was National Nurses Week. As I read through posts on Facebook and articles online, I recalled our time in the NICU where the nurses played such a major part in Solly’s recovery. There was one NICU nurse in particular who I credit with getting Solly home quickly and setting him up for success – namely, teaching us how to fight for him. This is our story with Judy.
“He’s going to be there for weeks or even months, not days,” Mike told me as I shook my head in disbelief, tears streaming down my face. It was two days after Solly was born via emergency c-section and he’d been admitted to the NICU due to seizures. We’d just received the result from his MRI: massive, multiple bi-lateral strokes that occurred some time around birth. The prognosis from the fellow on duty that evening was horrible. She didn’t sugarcoat it at all: our son would never walk or talk, he’d likely be unable to hear or see, and he’d probably never live an independent life.
We were numb. We felt extremely lucky that he’d survived a stroke that could have easily killed him, but we struggled to come to terms with an uncertain future, something that was hard to grasp after a healthy and uneventful pregnancy.
Instead of all the typical newborn memories and routines – bonding with our newborn in the hospital, snapping photos of the day we brought him home, midnight feedings – I fell into a different kind of routine: pumping every 3 hours so the nurses could give our sweet newborn breastmilk via a nasal feed tube and timing our visits to the NICU to coincide with the doctors’ rounds so we could hear every single update about our son even though many updates went over our head.
In the beginning, the neonatalogist gave us three goals for Sol to come home: his seizures needed to be under control, he had to breathe independently, and he needed to eat on his own. After two weeks, doctors were able to find the right cocktail of seizure medications to stop his seizures and as he got stronger, we were able to wean him off of his oxygen support.
However, the damage from his strokes severely affected his ability to master the suck swallow mechanism needed to eat. Once he was stabilized, a speech therapist began working with him once a day to slowly introduce him to eating orally. She was young, by-the-book, and overly cautious – rightly so, given the amount of brain damage he sustained with his strokes. She started by introducing a pacifier to our son, dipping it into milk so he could learn how to drink infinitely small amounts by mouth. Days past, and then a week, and while the speech therapist would try giving him a milliliter or two by bottle, she’d immediately stop if he coughed or gave any indication of possible aspiration. When she stopped, that was it for the day for speech therapy. It seemed as though we were never going to leave the NICU and I questioned – internally – the likelihood of him ever learning to eat orally if he only got to practice once a day.
Thankfully, the NICU nurses took notice, too, and one morning when we arrived, we found that one of our favorite nurses – Judy – was assigned to our son for the day. We were thrilled every time Judy was assigned to Solly. She had worked in that particular NICU for 40 years, was a mother, a grandmother, and someone who not only clearly knew babies, but was well respected by her fellow nurses and doctors. While she gave us the warm and fuzzy feeling that you typically get from a caring grandmother, she also knew when to speak up when it came to the best interest of the babies she attended.
As we made our way to his crib, Judy grabbed me and said, “ok, it’s time for him to learn to eat.” She explained that she’d given him 5ml by mouth earlier that morning and that he’d done great. She’d spoken with the neonatologist on duty and was cleared to give him some of his feeding by mouth at each feeding. She sat down with me and Sol, showed me how to position him for optimal feeding, and encouraged me to give it a try. To my amazement, he began eating….. and eating, and eating. Over the next couple of days, he quickly started to take the majority of his feeds by mouth and by the end of the week, we were able to remove his NG tube altogether. He was home by the 10th day, one month after we’d been admitted to the NICU.
Had it not been for our wonderful team of NICU nurses and Judy, in particular, our son may have been in the NICU much longer, he may have come home with an NG or G-tube, and he may not be making the strides that he’s making today.
You see, the biggest thing that Judy taught us was not how to feed Solly, but to fight for him. Because of her, we know to listen to our doctors’ advice and gather opinions from his medical team, but ultimately, to make decisions for him based on what is best for him. This has led us to seek out alternative treatments and therapies and today, our son who was supposed to live in a vegetative state is a thriving, happy 3 year-old. Sure, he is behind in all aspects of development, but he is walking with the assistance of a gait trainer, starting to talk, and doing so much more than we could have dreamed. We can’t wait to see what all he will do and accomplish in his great life.