It's not always Breast or Bottle; Sometimes it's Feeding Tube
I don’t know motherhood without feeding tubes and trials. They have been a blessing and a source of heartache on this journey. With each new tube and trial I have had to grow and learn in more ways than I could have imagined.
With every new medical device and trial I have felt like the rug got pulled out from under me; and yet some how I figured out how to find my footing again. You know that saying... “waiting for the other shoe to drop?” That’s kinda the state I have been in over the last 14 years of my daughters life. Some days when the shoe dropped it felt like it was a size 14 Nike high top that Shaq would wear; other days it’s felt like the delicate slipper of a ballerina; the ballerina days are what have helped get through the Shaq kinda days.
My name is Tina Beauvais and I am the mama of a medical complex daughter who is diagnosed with Muscular Dystrophy. In honor of Feeding Tube Awareness week I thought I would share how I’ve been learning how to “Two Step” through this Dance of feeding challenges and managing the many tubes along the way.
This post is to share the rawness of the journey through feeding tubes and challenges. If your a mama who been through some of these I hope you can say me too. I hope my words help you to know you’re not alone and that we share a connection like no other. If your a mama who’s never experienced this it’s a great way to understand the journey others have been on. Or if you don’t have children yet I hope you can read this and realize that there’s no one way to feed your baby. That the choice my not only be between breast or bottle but there may also be the choice of a feeding tube.
Noel was taken by flight-for-life the day after she was born to a regional Children’s Hospital. I remember standing in the middle of the NICU; doctors, nurses, people all around; when my milk came in. The pain, happiness and feeling of overwhelm hit me all at once. Thankfully there was a lactation consultant not too far away to bring me this a room to pump.
The moment that I had so eagerly waited for -finally being able to breast-feed my baby- in a moment became a source of so much sadness. It was my first hard reality that the experience I had planned for being a mother was radically different than anything I could’ve thought. Instead of the picture of nursing a newborn baby like I had seen on TV, my picture looked much different. It was me alone in a room with a plastic pump, tears and pain.
The dang sound of the machine almost felt like it was taunting me as my heartache and frustration grew. No one ever told me that this could be your experience of breast-feeding and mothering. It was easy to feel like a failure. Instead of the high of the oxytocin releasing and me feeling connected to my baby; I felt depression sadness and loss.
That exact feeling happened for the next 13 months every time I went to breast-feed. I could go from feeling fine and happy to sitting down to either try nursing Noel or pumping and there that feeling would be. Every single time my milked released I would have 30 seconds of torment. I would feel deep depression, loss and ultimate sadness. It was a constant struggle to choose to battle through those feeling every time I “feed” Noel. knowing that ultimately I was providing her with the best nutrition and care I possibly could.
I left the hospital with Noel, a Nasogastric feeding tube and a big blue box-the breast pump.
When I first left the hospital feeding Noel consumed my life. However, when I stared writing this post I realized that feeding Noel has actually consumed more than 7 years of my life. Her feeding challenges unknowingly become one of the biggest challenges of her life. I can not begin to tell the whole story in one post so stay tuned for the next one as I share the Early stages of her “feeding tube” complications.
If you read this and it really speaks to you and you would like to connect with me, send me a DM on Instagram, I would love to hear your story too. @TinaB_DisabilityInclusionEd