Whether you are a new tubie mom or a mom with many moons under your belt, I think we can all attest to the fact that tubie life IS HARD.
It’s hard not only for the many reasons that can lead to our babies having a tube (e.g. countless uncertainties and diagnoses, numerous hospital/doctor visits, food aversions, weekly therapy appointments, etc.), it’s hard because it isn’t what we thought motherhood was going to be.
None of our daily routines look like what we envisioned and it’s frustrating beyond words some days. Gagging, vomiting, severe food aversions, are all a reality for many of us and it’s mentally and physically exhausting.
My little L had her gtube placed while in the NICU and we were nervous but we were so excited to finally have our babygirl home.
To say it was a learning curve is an understatement. Unbeknownst to me, this was going to be one of the hardest journeys second to the NICU.
My husband and I were exhausted from the regimented feeding schedule and all the processes that accompanied tubie life. Clamp, meds, unclamp, flush, clamp, beep beep, clamp… repeat. Sound familiar?
Not to mention I was pumping around the clock and dealing with wretched clogged milk ducts every single day.
And….. our L vomited A LOT. We were told to keep offering her the bottle, and if your babe was anything like ours, it was a struggle each time.
We would not only pour our energy to do all the tricks to get her to eat but we also poured our hearts and hopes, only to be disappointed 95% of the time. She never drank more than 30ml at one feed and this was rare.
But then, she’d puke that up more than half of the time.
I was exhausted and overwhelmed.
I remember crying in disappointment, not in her, but in me. Why can’t my girl eat? What am I doing wrong? Why is she puking all the time?
Then I remember crying in anger. This can’t be a good life for her! Why is this happening to us?? Why is she puking?! Why won’t she just eat??! Why can’t the doctors or therapists help us!?
Then after hours of researching, I would feel encouraged to find a solution. If only I did x, y, z, then that’ll fix everything.
Only to find that it wasn’t… again, my hopes were crushed and I felt discouraged many days.
As you can see, motherhood for me wasn’t the joyous time everyone protested it to be. Don’t get me wrong, I love my girl more than anything but I felt so angry all the time.
Until, I did this.
I was in one of my lows with tubie life. L must have puked 5-6 times that day and I was exhausted from cleaning up vomit and smelling like it. I was tired of being house ridden because we were afraid of the pukery in the car or in public.
After my boo hoo cry, I remember thinking, this isn’t a good life for ANY OF US. I was so stressed out, my marriage was on the rocks, and I knew my girl could feel it.
Then it hit me. I don’t want my L to grow up thinking all she is worth is whether she can eat or not. So I had to stop focusing so much on that. Read that again.
There is so much more to L than her ability to eat. She was cooing, smiling, shaking toys. She had come so far from her little 1lb 10oz self. But if I wanted her to grow up knowing how amazing she was/is, then it had to start with me.
I had to make the shift from “Did she eat? How much? Did she puke? Oh nooo!! Dangit! How was she positioned? What is wrong now?” to
“Oh, she tried some! Cool.”
“As long as her food experience is positive.”
“Look at everything else she is learning.”
“She’s alive, I’m alive.”
“So what if she has a tube all her life? She’ll be quirky as all hell.”
I want L to have a healthy relationship with food. Not a stressful one. So again, this has to start with me.
Once I made this shift in my thinking, it was life changing. It wasn’t an immediate 180 but I felt so much more peace. Feedings weren’t as stressful anymore. There wasn’t this undue pressure 6-7 times a day. I was more able to enjoy motherhood and my marriage again.
And, coincidentally or not, she started to drink more or at least allow things in and around her mouth without gagging and puking.
Even as a licensed therapist I struggled with tubie life… it took me 6+ months to get to this place and I needed this perspective change.
This isn’t to say I gave up trying to find out the source of her vomiting or inability to eat, but there wasn’t this pressure to figure it all out right then and there.
There were still moments of disappointment and frustration but they became less intense and less frequent with time and practice.
This was a new way of thinking and like any other skill, I had to keep practicing to become better at it..for it to become second nature.
Your brain is like a muscle, and the way you think is a skill. Learning something new will take time and practice for you to be good at it.
So allow yourself some grace as you learn a new way of thinking. Allow yourself to feel what you feel but gently nudge yourself to think differently, to believe differently as you’d like a best friend to do for you when you’re upset about something.
I know for damn sure it isn’t easy. But you’re not alone mamas. Whether it is a gtube, CP, trach, mobility issue, speech issue, whatever the struggle is, we all struggle and it’s a process of grieving. So many of us out there struggle with this very thing, though our plates may look different, we still feel the weight.
So, please feel free to comment about your tubie (or special needs) mama journey and your own experience with the ‘shift’. It may just be the one thing another mama needs to hear.
Happy Shifting Mamas!
