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Kamille's Story

#MyStory #FeedingTube #Pumping #Breastfeeding

I have memories of attending breastfeeding classes with my mother, a lactation consultant for the county health department.


As a I drive down certain streets in my hometown, I can still remember my mother and sister discussing whether or not my sister should start using formula for her daughter. When it came time for me to have my own child there were too many things to think about. I prepared for it all and told myself I would do the best I could.


I pumped for the first time, by myself, without her or him by my side. I was with my mother when she took her last breath two years before and I had only held my son for a minute before he was carried away from me to be put on IVs and monitors. A nurse helped me collect the first few drops of gold in the middle of the night. My baby boy slept upstairs under the careful watch of beeps and experienced eyes while we all awaited transport to the local children’s hospital.


After open heart surgery at 4 days old, the body can be exhausted even from digestion so how he received his nutrition was not in my control. Nor did I wish it to be then. Breastfeeding at some later date would be a miracle, not a choice and I quickly accepted that. If my boy had a chance at life, he would get whatever I could give while I juggled the rest of it.


His first breast milk was delivered to him via syringe pump over a day after his surgery. His first taste of breast milk was given to him by his father, via the tip of a pacifier, with a trained therapist close by. After a month of holding my son and his accessories, speaking with a team of doctors daily, scary moments, and slow progress, our son was discharged from the Cardiac Intensive Care Unit.


I carried our boy through the hospital to the step down unit, the longest I had ever been able to carry him. The promised feeding support came but our son had signs of aspiration due to a paralyzed vocal cord, an unintended result of his heart surgery. Fifty-six days after our arrival, we loaded our beautiful child into the car with only one last accessory- a nasal feeding tube attached to his perfect cheek.


For months we worked on bottle feeding with a pacifier attached to a syringe. Nobody told me that decreasing his feeds via the pump might help motivate him. Nobody said that I had that control. After weeks of being told what had to be done for him, to save his life, to make him thrive, nobody told me that my intuition was the rule now. Looking back, I have regrets about that time but I know too well that hindsight is not accompanied with the physical and mental exhaustion that was a part of my life then. When I keep that thought close, I know that we did everything we could have.


Thankfully, humans hold the power to adapt and my intuition began to rule again. My mother’s lessons on nutrition and babies overwhelmed my memories and I leaned on her love and guidance.

I pumped and worked until I couldn’t. Eventually, the thought of plugging myself to a machine, made me boil with rage or weep inside. A tally of the hours I had spent with the machine instead of holding my son or enjoying the company of my friends and family began to fill my head. My life was already filled. A child with a feeding tube, reflux, and an aspiration risk requires constant watching with something to catch vomit in hand. Our days were filled with washing clothes, bedding, bottles, syringes, priming bags, and attempting to affix the tube to precious baby skin with medical tape. With appointments for over 10 different specialists, therapy for feeding and PT, and both of us working, the most natural thing I had left was the thing causing me the most grief. Besides being a child with CHD, my son also was born with a weakened immune system. I was taught that breast milk was not just good nutrition but also a miracle elixir. In order to stop pumping, I had to let go of that immune boosting promise.


As I struggled to let go, I began looking for mothers willing to donate their gold to babies that weren’t their own. I was skeptical. Out of desperation, I posted in a local group and waited to see what would come of it. A woman who was weaning her daughter offered some of the extra. The woman and I were from the same state and our hometowns were just hours from each other. She and her adorable family lived just minutes from me now and our mutual friends showed that her life had taken her on a similar career path as mine. As I accepted her offer, she told me her daughters name- which happened to be my own. With that, I accepted the end of my journey and my mother passed along her blessing.


As we transitioned from breast milk fortified with formula to fully formula feeds, I took pride in finding a powder that worked for my baby. I proudly mixed his formula to just the right calorie content and I made spreadsheets to calculate the recipes so that my family could help prepare the mixes.


Our journey to feed our son orally has not ended. We still struggle to feed him. The balance of a positive relationship with food and healthy growth is a tightrope that I walk every day. Some day, our journey will change and we may have a meal without tubes and syringes. I don’t dwell on it though. I will prepare for it all and I will do my best, there is too much good to think about.

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