My daughter was born at 26 weeks gestation and was in the NICU for 148 days. She left the NICU with oxygen support and a feeding tube. Feeding was her biggest hurdle and it came to a point where that was her last “check box” before being discharged from the NICU, so we decided to get the gastrostomy tube (G-tube) and bring her home. That was 15 months ago.

Our Tubie journey has been one heck of a ride and I would be lying if I said I was happy about it the whole entire time. Here is a list of things I wish I didn’t have to say:

1. Some children have difficulty with walking. Some children have difficulty with talking. Some children have difficulty with eating–that is my child.
2. It is probably one of the most unnatural ways to eat, but this is the only way my daughter could eat. This was a very difficult notion to grasp…I fought real hard against this. The thought of “my child could not survive without this” killed me.
3. People will stare. Some make remarks. Others ignore. None feel good.
4. I count calories, I calculate macros, I measure water intake, I measure EVERYTHING…because I am trained to. The doctors in the NICU and countless GI experts and nutritionists drill into my exhausted mom-brain to properly nourish my child. To do otherwise is insinuated as neglectful. Sadly, eating has become a medical procedure.
5. I am exhausted. I have tried literally everything under the sun to get my child to eat…
6. My brain is fried. I have researched hours upon hours on why she won’t eat, and I have spent countless hours exhausting all measures with appointments and tests.
7. I don’t know when the tube will come out. Nor do our doctors and therapists. It used to eat me up inside wondering why can’t my child just do the most simple thing as eat?!
8. I have to schedule my days around her feeding schedule, which many would consider fairly typical of any oral eating child. But what you don’t know is that I am also scheduling around all of the little nuances too (e.g. splitting up a 3oz meal into two with a 30 minute break, not giving too much water too fast and waiting 15 minutes before starting the feed, allowing an hour of rest after, etc.). Not to mention needing to keep her fairly confined so I can connect her to the extension and feed her.
9. I have dealt with a pukery of a life for months. And no, IT ISN’T SPIT UP. She vomits.
10. I can’t just have anyone watch her. Using a g-tube requires training and A LOT of trust. Things can go awry quick.
11. Leaving home without a g-tube backup is not an option.
12. At any point in time, my bag may look like I am a druggie with all the syringes and medications.
13. I have probably (I say probably because I don’t know your story) done more laundry than the average new mom. Courtesy of the vomit and bed feeding incidents.
14. I grieve over the idea of simply orally feeding my child. I may have even unknowingly stared at another mom feeding their child and cried inside.
15. I can convert metrics to ounces VERY WELL.

BUT I ALSO….

1. Love my child to pieces and am blessed to have her.
2. Know the tube doesn’t define my daughter, she is MORE than just how she eats. I don’t want her to define herself by this so I won’t, and you shouldn’t either.
3. Have accepted this is our norm and she is who she is…A wonderfully stubborn and bright little girl.
4. Am grateful for medical advances to allow us to keep her alive, but I also feel deep down she would somehow kick life’s butt regardless.
5. Would prefer if people would just ask me about her feeding tube rather than stare, blatantly ignore, or make ignorant remarks.
6. Have stopped measuring every little thing. Trying to de-medicalize feeding IS NOT easy but yet so liberating at the same time. I still make sure she is properly nourished but I am thankful she is healthy enough for me to “treat” her as a typical oral eating toddler, sort of. She eats an awesome diet of nutritious foods now, just blended and tubed.
7. Have stopped searching incessantly for medical reasons because, well, I have already done it all. But also because it wasn’t healthy to put myself under such stress.
8. Continue to go to doctor and feeding therapy appointments frequently and even travel 3 hours for specialists, because it’s still important to me to provide the best care possible.
9. No longer cry and scream every time she vomits, partly because it has slowed down a lot, but mostly because I am overcome by compassion when it happens.
10. Still have trained professionals watch after my daughter because this too is important to me. It is also very expensive.
11. Am a pro at inserting a g-tube if needed but still prefer to not have to!
12. Have made a super cute feeding backpack for my daughter that houses all of her stuff. Because we cute like that.
13. Enjoy laundry now because I have got the KonMari Method bug, and I LIKE IT.
14. I have also reached the stage of acceptance with my grief. It was NOT an easy journey and I’d be lying if there weren’t fleeting moments of fear and sadness when I think about her tubie future. But I no longer am filled with angst and jealousy. Just pure love and compassion. She did that to me.

P. S. If I am snappy about you asking “when the tube will come out?”, it isn’t because I am mad at you. It isn’t because I am offended. It is because I am tired. Tired because I ask myself that question countless times a day. Because our doctors and therapists don’t even know. Even though I have accepted it, I still like to have some normalcy in conversations. So feel free to ask me about her, what she’s doing, how she’s doing, and let me bring that up. It just isn’t the one thing I want to talk about with everyone all day, that’s all. I still love ya though.

😉

Here is a pic of my Happy Tubie. Don’t mind the hair, she just woke up from a nap while mommy was folding laundry.

This is the smile she gives when I ask her where her button is.