I’m sure there is at least one person out there who is dying to know how I did this. No? Oh, well. I’m going to write this anyway. Because it’s what I do. It’s what I live for. To help poor, unfortunate merfolk, like yourself!
As I outlined in this post, due to a series of unfortunate events, Regina ended up being fully tube fed and retching and throwing up if any sort of nipple came near her mouth. Everyone assured me that this would magically stop after she had her open heart surgery. So, I decided to white knuckle it with her tube feeds until then.
I was bound and determined to breastfeed this child some day. However, I discovered to my chagrin that exclusively pumping is nothing at all like breastfeeding. You feel like a dairy cow. And not like the nice family pet dairy cow. More like the dairy cow in a metal cage next to countless other dairy cows all hooked up to loud machines. Even though nursing my babes in the beginning is tedious and can take them up to 45 minutes to finish a feed, they eventually get more efficient at it and by six months can empty a breast in 10-15 minutes flat, sometimes only 5 if they are really hungry. A pump can do no such thing. You are hooked up to that sucker (pun intended) for 20 minutes a session every time for as long as you are pumping. And for me, a pump is horrible at maintaining my supply. I had to do at least five sessions a day to keep barely enough supply to feed Regina. And her volume needs kept increasing while my supply kept decreasing.
Now, I’d like to take a minute to explain the difference between tube feeding and typical feeding (besides the obvious presence of the tube.) While a six month old baby can drink a 4 oz bottle or empty a breast in about 10 minutes, if you try to pump 4 oz by tube straight into a stomach in 10 minutes, what you get is projectile vomit everywhere. I couldn’t even get 4 oz into Regina in half an hour. An hour was our best time, but it usually took two hours a feed if I really didn’t want too much vomiting. And she got five feeds a day. So. We’re looking at 10 hours of my day spent tube feeding Regina alone. And if you think I could just pump or do whatever during those feeds, think again. I spent all of those hours catching vomit, cleaning vomit, turning the feeding pump off so that she could vomit, starting the feeding pump back up at a slower rate, and making sure she didn’t choke on her vomit. We seriously went through about 20 burp cloths a day. My whole house smelled like vomit.
Right. To recap, 2 and a half hours a day pumping, 10 hours a day feeding Regina. Oh, and I had those four other children to take care of. If you think those numbers don’t really add up into something a mere mortal can accomplish, you are right, they don’t. So, naturally, pumping sessions got the boot, since obviously I couldn’t forego feeding Regina. As my sessions were reduced, my supply pretty much vanished overnight.
Her open heart surgery came and went, but her willingness to eat by mouth remained nil. Regina was vomiting so much she started losing weight, which was alarming her cardiologist. I called the GI in a panic, and his condescending nurse told me just to slow down her feeds. “She’s already taking 10 hours a day to feed,” I told her. Then, the nurse told me that I should just give up and hook her up to a feeding machine 24/7. I wanted to cry because Regina was an ordinary six month old who wanted to be active and roll around, not constantly chained to an IV pole. “What on earth could be causing all of this vomiting?!” I asked the nurse. “She must have a stomach virus,” replied Nurse Condescension. “She does NOT have a stomach virus. I would like to speak with the GI.” “He is out of town for two weeks. He can call you back in a month or so.” Click.
In desperation, I called Regina’s cardiologist, asking him what he thought we should do. We could not keep having her lose weight while she was trying to recover from open heart surgery. He said he could order an upper GI tract X ray to see if there was a problem there. So, we did the upper GI, which found no problems other than a weird looking pancreas. Nurse Condescension called me with the results. She said we could talk to the GI about what to do when he came back in town. In two weeks.
Meanwhile, Regina was projectile vomiting so much the pediatrician prescribed her a stronger reflux medicine just to minimize the damage to her esophagus. I kept calling Regina’s GI office demanding that the on-call GI see us. He refused to see us, but instead told us to go to the children’s hospital to get an ultrasound of her pancreas. I would later confirm what I suspected all along, that this was just a wild goose chase to keep me busy until her GI came back from vacation. You cannot see a baby’s pancreas on an ultrasound.
I desperately called every pediatric GI in town, asking if we could switch practices. All of them said sure, the first available appointment will be in three months time.
I finally decided to join some tube feeding groups to see if any moms out there could give me any advice. I told them about the constant vomiting. “Oh, yes,” the tubie moms said. “That is from the NG tube. ” My jaw hit the floor. Not one doctor or specialist had even mentioned in passing the possibility that all of my daughter’s problems could stem from that damn tube. Instead, they had all been blowing me off and instructing me to take her to get all sorts of unnecessary tests done. I. Was. Furious. And more determined than ever to get my girl off of this tube.
These infinitely more helpful than any medical professional moms then instructed us to look into private tube weaning programs. Growing Independent Eaters was the most highly recommended. All of the other ones can cost tens of thousands of dollars because they know that medical professionals know nothing about weaning unnecessarily tube dependent children, and that the feeding disorder clinics have years-long wait lists, so they have you right where they want you: pay us whatever amount we demand, or your child will be tube dependent for years. GIE isn’t like that. It is run by former tubie moms, along with doctors, dietitians, and speech therapists, charging a reasonable amount and providing you with whatever support you need. And, by the way, they did not compensate me in any way for this plug, I sincerely think they are that wonderful.
I joined the GIE Facebook group to try and glean some information and advice there. Meanwhile, Horrible GI finally sauntered back into town from his two week long vacation and called me back. He recommended a sedated MRI and then an extremely invasive surgery in order to mess around with her pancreas. I told him no thank you and that he was fired. My dear friend who has gotten me out of just about every jam imaginable in my life had found us a new GI who saw us immediately and told us that surgery was completely unnecessary and would probably cause more harm than good. However, when it came to weaning her off the tube, his response was the same as all the other doctors: “it will just happen.”
Well, it didn’t just happen and it was nowhere close to happening. I told Regina’s feeding therapist how I wanted to wean her using the GIE model, and she agreed. So, we began the quest to get my poor vomiting girl off of this tube for good.
Here is the problem with babies and children who have been exclusively tube fed all of their lives: the sensation of hunger means nothing to them. All of their lives, the sensation of hunger has come and gone without them having to actively do anything, so they have learned that hunger means nothing more than wait it out and eventually it will go away. That is why I could wait freaking five hours between feeds and Regina still wouldn’t eat. And then, of course, I’d tube feed her. Quitting cold turkey doesn’t work either because they would be too hungry and miserable to eat, and wouldn’t make the connection that eating will make them feel any better anyway. Kind of like when a baby gets too tired to sleep. Although, a sleepy baby will eventually pass out. Nothing can compel a starving baby who has never eaten to eat. Therefore, the GIE model is to gradually introduce small amounts of consistent hunger to let them make that connection at their own pace.
I decided not to hire GIE at first to see if I could manage the wean on my own. I knew my girl best, after all. The lawyer in me has to preface this with: this is not medical advice at all, I am merely telling our story. Take it how you will.
Day 1: I reduced all of her tube feeds by 30%. You guys. Her vomiting immediately vanished. SHE HAS NOT PROJECTILE VOMITED SINCE THIS DAY. However, her hunger had not kicked in yet and she did not take much by mouth at all.
Day 2: Her oral intake doubled.
Week 2: I reduced all of her tube feeds by 50%. Her oral eating took off.
Day 11: She ripped out her tube by herself and started drinking all of her bottles. We never looked back.
And that, my friends, was that.
I learned that I needed to improvise a little because my child hadn’t used her mouth muscles in eight months and they had atrophied to such an extent that taking all 5 oz by bottle was too much work for her. But she could devour a whole bowl full of puree easily, so I would hide the rest of her formula in there. Her poor tongue would tremble after drinking a bottle like your muscles do when straining themselves.
She lost almost a pound during those eleven days while she was learning to eat, which is normal for a GIE tube wean. She has gained it all back and then some since then.
I never did get to breastfeed my little girl. There were only a few drops left by the time she was drinking her bottles, and she still acted like I was trying to poison her whenever I tried to put her on the breast. Robert Burns said it best: “The best laid schemes of mice an men gang aft agley.” She is tube free and so much happier. I really can’t complain.
Here is the chart I made during her wean, in case you’re interested. It does not include all of the food/purees she ate, because it made my brain hurt trying to measure them out and include them. I know, I’m pathetic. The first four days is from when we hadn’t started the wean yet and we were using the whole, “just keep offering her the bottle and it will magically happen” approach.
Photos courtesy of https://www.alexbaigasphotography.com .
“Let us, then, be up and doing with a heart for any fate; still achieving, still pursuing, learn to labor and to wait.”
-A Psalm of Life, by Henry Wadsworth Longfellow