Updated: Aug 1, 2020
This morning, Redmond is playing on his play mat, alternating between the toys, the soft arches that stick up from the mat and dangle toys above him, and his toes. He gabbers to himself, giggling, stopping to look at his beautiful hands for a moment. He is happy, active, verbal, and content. As of November 13, there are NO tubes on his face. He no longer attracts attention from strangers simply because they wonder what the bright yellow tube taped to his face is. When his face was finally free from tubes, he was 8 ½ months old.
The surgeon who placed his g-tube (a feeding tube that goes directly into his stomach) gave us instructions for feeding him that have shocked our daily routine into a new version of normal.
In September and October, we desperately tried to get Redmond to eat enough baby food and milk by mouth that he wouldn’t need a feeding tube at all. We hoped and prayed that we’d be able to wean him off the ng-tube (a long, bright yellow tube that we threaded up his nose, down his throat, and into his stomach), and we did everything we knew to do within the parameters of his health concerns, to no avail.
Our Daily Routine
Beginning in September, we started by waking him up at 9am (he’s a super-sleeper), and then feeding him breakfast. He hadn’t had anything to eat in over 8 hours, but he never acted hungry or interested in breakfast. Still, we began with “oral stimulation” to wake up his muscles (this is what we’ve been working on in speech and feeding therapy). We took various toy-like instruments and rubbed them inside his cheeks, on his tongue, etc. Then for 30 minutes we offered him baby oatmeal mixed with high-calorie milk, puréed fruits and vegetables, and a sippy cup with more milk. He typically drank between 5-20 cc’s of milk, and whatever was left of the 100 cc’s we wanted him to drink we gave him via his feeding tube.
We had a bag with a long tube which we attached to his feeding tube and we slowly dripped the milk into his stomach. That process took another 30 minutes. Because the ng-tube propped open the sphincter (a flap between the stomach and esophagus that stays shut when we’re not eating to keep the food in the stomach), he often spit up after he ate. It could be anything from a tablespoon to projectile vomiting his entire feeding. There was no pattern we could establish. We tried reflux medicine but it made it worse! We did the best we could, holding him upright for another 20-30 minutes after the feeding, distracting him if he coughed or gagged on the tube, hoping he could keep it down. So feeding him breakfast took 90 minutes.
We had to supervise him closely when we fed him via the ng-tube because he was very bothered by it and the tape to keep it in place. (First I put down a thin layer of “skin prep” ointment, then stuck a gel-pad across his cheek, then I laid the ng-tube across it and covered it with a thin piece of clear medical tape called Tegederm, and finally I put a piece of tough, white medical tape as close to his nostril as possible to prevent any gaps that he could pull on.) He made it his job to get that white tape loose, so I ended up changing it several times a day. In spite of all the tape and supervision we provided, he often managed to get it loose and pull out the tube.
If he pulled it all the way out during a feeding, all we had to deal with was a mess. But if he pulled it part-way out, it was possible for the milk to go into his lungs. Fluid like that in his lungs could make it impossible to breathe, a crisis situation, especially for someone with the early lung problems that he experienced. Less critical, but very difficult, was putting the tube back in his nose after he pulled it out. He screamed like we were skinning him alive, often forcing the tube to come out of his mouth instead of go down his throat, so we’d have to start all over again. One day he pulled it out three times!
If the tube was inserted at a hospital, he was given a chest x-ray to be sure it was in the right place. At home, we measured Redmond, then looked at the numbers printed on the side of tube to insert it far enough to be in his stomach (not his esophagus or intestine). Then we used a stethoscope to listen for a “whoosh” as we forced air into his stomach via the feeding tube. I was often concerned that the tube wasn’t placed correctly, so we watched him like a hawk. Rarely ever did we put him down and walk away during a tube feed.
After 90 minutes of feeding, he often projectile-vomited the entire meal. It was very discouraging. It also meant we went through a lot of wardrobe changes and laundry.
For lunch, we repeated the whole process from breakfast – another 90 minutes. We waited 3 hours from the start of one meal to the start of the next, so we had about 90 minutes in between feedings.
Three hours after lunch, we attempted to give him 160 cc’s of milk via a bottle or sippy cup. We tried all kinds of cups and bottles/nipples. Rarely ever did he take more than 30 cc’s (1 ounce) orally, but we gave him up to 30 minutes to try. We tube-fed the rest. It took about 45 minutes to do that tube feed, then 20-30 minutes of holding him upright to help prevent reflux.
At supper time, we repeated the breakfast and lunch process. This meal was typically his favorite and the one he responded to the best. It was a lift to my spirits when he gladly opened his mouth and ate the food, drank from his cup, and was happy about it.
At around 9pm and again at midnight, we repeated the mid-afternoon meal. Three meals a day of baby food plus 100 cc’s of milk, and three meals a day of 160 cc’s of milk only. He typically fell asleep during the 9pm feeding and slept straight through the midnight feeding until I woke him up the next morning.
That’s approximately 9 hours a day of feeding.
Some days I just couldn’t handle it and I didn’t do all three baby-food meals. I just tubed 160 cc’s instead, not offering any of it orally. When possible, I turned the job over to our babysitter. She’s amazing, sweet, and competent. (She is a GIFT in more ways than one.) My gracious mother-in-law also overcame her fear and learned how to feed him so she could babysit. I don’t want to imagine life without them.
When you feed a six-month old baby food, you have to teach them to eat. They don’t know what to do with thick or textured foods. They often spit it back out or need a lot of encouragement to swallow. So while I fed him, I alternately massaged his feet and neck to induce his swallow reflex, I sang songs and made crazy faces to get him to open his mouth, and I taught him sign language (all done, more, and good job!). The amount of energy it took to do that over and over was difficult at times.
How It Affected Me
The “side effects” of spending 9 hours a day feeding the baby became a problem. First of all, that makes for an extremely sedentary lifestyle. I’m not a super-energetic person, but there are times when I’ve felt like I’m going to lose my mind if I can’t get out of the house for a few hours and just walk around a store. Forget strenuous exercise or healthy food preparation. There’s not much time for things like showers, laundry, grocery shopping, and attending to the 3 and 4 year olds we already had – much less chopping vegetables, preparing meals, or going to the gym. And when the 3 and 4 year olds know that you are stuck in a chair, literally attached by a tube, there’s little incentive for them to obey. What are you going to do?
As I’ve watched in despair as my waist line expands, my precocious children have repeatedly asked me if I have another baby in my belly. According to them, I sure look like I do. It takes a lot of self-control to handle those comments when you already want to scream every time you look in the mirror or try to find clothes in your closet that fit…
When I said I rarely put Redmond down during a tube feed, I meant it. I actually never put him down during a tube feed until a couple months ago. I was the only adult at home and Charlie was out of control. No amount of verbal encouragement, commands, or warnings would rein him in. And he knew I was powerless to stop him. That was the day I decided I wasn’t powerless. I could risk putting Redmond down for a few minutes to deal with my other two children, who deserve my time and attention too. The look of shock on Charlie’s face when I put the baby down, got out of the recliner, and dealt with his deliberate disobedience and taunting was a wakeup call. Thank God that Redmond was okay for those few moments and I realized that I was going to have to take some risks if I didn’t want my older children to become unruly beasts.
Once we were able to accept that Redmond was not going to wean off the ng-tube like we’d hoped, we decided it was time to do the g-tube surgery. We weren’t excited about it, but we were done with the struggle. People kept telling us that our life would change for the better once we got rid of the ng-tube, and we were hopeful, but we couldn’t really understand how.
After the g-tube surgery, about 6 different people came to Redmond’s hospital room to ask me how I’d been feeding him. They could not understand. I didn’t think it was that complicated, but finally someone wrote it down and figured it out. A nutritionist visited us and we worked out a plan for his daily calories. Then the surgeon sent word through the nutritionist that we were to change our feeding plan.
The New Plan
From 9am-9pm, give Redmond ONLY the food and milk he will take by mouth. Nothing in his tube. Keep track of how many calories he takes by mouth and subtract it from the total amount he needs a day. At a very slow rate, tube the rest of the milk from 9pm-9am, while he sleeps.
No more daytime tube feeds?
Because Redmond’s feeding tube now goes directly into his stomach and he no longer faces the risk of aspiration or reflux, he can receive tube feeds without constant supervision. He can receive tube feeds lying down. We don’t have to hold him upright after each meal.
My schedule changed dramatically. He now receives 4 small meals a day of food and milk in a cup. And I can feed him 3 meals at the table during family meal times. The tube feeding happens while he (and I) sleep.
I’ll admit that in the first few nights we were home from the hospital, I didn’t sleep well. I got up every few hours to check on him. Has he thrown up? Is he tangled in the feeding tube? Has the feeding tube come loose, spilling milk onto the bed?
The morning I wrote the first draft of this blog entry was the first time I’d been able to write anything in quite a while. Eliana was at preschool and our babysitter took the boys out for an adventure. The house was quiet and I ignored the other thoughts that competed with writing time – it’s a great time to go exercise, cook a healthy meal, take a long bath or even an unrushed shower, finish the farm bookkeeping, etc. My soul is fed from writing, so I reminded myself that I should have time to do those other things later. I’m finally no longer tied to a feeding tube.
Since the feeding tube was taken off his face, Redmond’s development has shot ahead. He was giving so much energy to the effort to get it out that he didn’t do other things. Feeding him is now a 10-15 minute time where he joyfully opens his mouth, swallows the food, and asks for more. He happily drinks milk from a straw. We are amazed. Our therapists are now talking about weaning him off the tube entirely, which is shocking to us. We’re just getting used to this new normal.
While we can’t predict the future, our feeding therapists encouraged us that it is perfectly reasonable to expect that Redmond will only need his feeding tube for 4-6 more months. Once he turns a year old, he no longer needs primary nutrition to come from milk. As long as he can eat enough calories to sustain him, we will no longer need the tube. We are hopeful and excited for that day to come.
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In my next blog posting, I’m planning to write about what this entire experience has been like for me emotionally.