It was 2am. I stood in the corner of my living room beside the changing table, my phone nestled between my chin and shoulder, my hands tightly clinging to my 11 week old baby boy, my eyes glued to the nasal-gastric feeding tube now protruding from his little nose. It was our first night home after 4 nights at Boston’s Children’s Hospital where they had placed the tube and trained me on how to feed my baby. This was new to me. He was my third son, but my first needing to be fed by anything different than my own body. And he had just finished a huge bout of projectile vomiting mid-feed, pushing the tube partially out--one of the things I was most nervous about upon leaving the hospital.
My husband was upstairs asleep with our two older boys (2 and 5 at the time) and I hadn’t wanted to wake them, as our oldest was dealing with some significant medical issues of his own. In a blur I had managed to turn the pump off to stop the feed, disconnect the ng-tube from the pump, scoop-up my crying, scared baby, and find my way to the folder in the kitchen that contained all of the information from the Home-Care company, including the number for a 24/7 on-call nurse. My hands were shaking as I hugged my vomit-soaked baby and dialed the number while whispering “You’re okay, Mama’s here. You’re okay, I have you. We’re going to be okay”. Perhaps attempting to reassure myself as much as my son.
The operator answered. She took the basics from me before paging the on-call nurse. What was probably seconds, felt like hours before a sleepy woman’s voice groggily answered, “Hi Mom, what’s going on?” With a trembling voice I somehow managed to get out the summary of what had just happened. How I was holding my little man in my arms, who was still covered in vomit, and how I didn’t know if the tube was out far enough to jeopardize it being dislocated and potentially risk being in his lungs. I will never ever forget the first words that came out of her mouth; “You’re doing a good job, Mom.”
Cue gigantic lump in my throat and tears silently streaming down my face.
Those six words were EVERYTHING I needed to hear, because I didn’t feel like I was doing a good job. I was exhausted and scared. When I found out my littlest man was silently aspirating every time he swallowed and would need to stop breast-feeding immediately and be fed using a nasal gastric feeding tube and pump, a bit of self doubt had started to creep into my otherwise confident self. I started to worry if I was going to be able to handle it all the way my little guy needed me to. In a vacuum, I probably wouldn’t have had a problem (or maybe I would have--there was after all a huge tube going up my baby’s nose and down into his belly, and fancy pumps and equipment needed to feed him). However, we weren’t living in a vacuum. And in the several months leading up to my baby’s birth our world had been flipped upside down as we learned our oldest son had both hypogammaglobulinemia (a primary immunodeficiency disease) and PANDAS (Pediatric Autoimmune Nueropsychiatric Disorder Associated with Strep), and our almost-2 year-old had Childhood Apraxia of Speech and Food Protein Induced Enterocolitis Syndrome (and would later be diagnosed with hypogammaglobulinemia as well). It was a lot for our family to process and I wasn’t sure how many more health-related challenges with my kiddos I could handle. We also didn’t know what was causing our son to aspirate, and with appointments scheduled with Boston Children’s Hospital’s Neurology, Nutrition, Eating and Feeding, Gastroenterology, ENT, and Genetics departments, there was plenty to worry about. And I was all worried-out over PANDAS, chronic illnesses, and Speech Apraxia.
“Are you there, Mom?” said the voice that I will be able to hear in my head for my lifetime. The lump in my throat had literally prevented me from answering. I couldn’t speak. A few seconds went by before I was able to let her know that I was still there. I don’t remember anything else that the nurse said. I know she walked me through how to check the acidity of the contents of the tube to confirm that the tube was in-fact still in place in my son’s belly, and warned me of some signs that could indicate a problem during the next feed. I remember I thanked her, and then hung up.
As I got my little man changed into a new, dry set of pj's, and plopped into our rocking chair, I took a deep breath. I knew we were in for a long-ride. I replayed the nurses voice over and over in my head and eventually the self-doubt crept back out as quickly as it had crept in. As I looked down at my perfect little baby cuddled in my arms, I knew that she was right. I was doing a good job. All of us Mamas' (Dads' too), regardless of how confident we are, need this occasional reminder. My family is blessed with an incredible village that helps us care for my three boys (extra special shout-out to Maama and Gumpy). But that on-call nurse, a woman who I have never, and likely will never meet, played a critical role in helping me care for my youngest little guy (and his mom) that night, and I will be forever grateful.
To all of you Moms and Dads out there, particularly those of you who play multiple roles of parent and medical-caregiver...take a deep breath, you're doing a good job!