I’ve been thinking about writing this for awhile. This is a peek into our lives and how we feed our twins which looks different than the average family. Jaxon has a G-tube and Axel has an NG tube (as of this writing, though we are currently waiting for a G-tube surgery date for him as well).
Some people may think it looks easy. Your baby has a plugin in his belly! Just plug in a tube, press start and he’s being fed automatically. Wow, how wonderful, how convenient! …Some people may think that. Nothing could be further from the truth.
The Actual Feeding Process
Now, every tube parent’s situation is different so this is just what our situation is like. And it will change over time as the boys get older and (hopefully) do well with solids in a few months. If they are able to eat those. There is no guarantee what they will or will not be able to do.
But for now, here’s what a feeding session looks like:
This is for ONE TWIN! We each tackle one at a time since they require one-on-one feeding right now, even just to hold them as they flail around. My hope is in the future one of us can feed them at the same time! (Hopefully before Chris goes back to work!)
- 7am: make bottles (breastmilk with formula powder added in for extra calories as per our doc, so it’s like 2 meals in one and very tough on their tummies!)
- 7:15am: change diapers, start with trying to give Jaxon or Axel a bottle
- 7:15am – 7:30/7:45am: attempt to bottle feed. If it is going well and they’re not upset, we continue trying for up to 30 minutes. Sometimes 40 if we know they’re going to finish it happily. If there is a huge meltdown, signs of aversion or fear or sleepiness, we stop and turn it into a tube feed instead.
The biggest struggle is getting them to latch onto the bottle, as they can be really hungry and want to eat, but unable to coordinate their mouth to latch onto the bottle and/or to actually suck on it to get the milk.
- 7:30am: set down the now-crying baby to go get the feeding tube pump pieces ready. It’s horrible listening to them cry in hunger while I get it ready. Even worse in Jaxon’s case, I need to connect a plastic tube (known as an “extension tube”) to his G-tube “button” (in his stomach) and tape it to the side, something that takes a fair degree of precision with a baby screaming and flailing around and arching his body.
- 7:45am-8:30am: get all the parts ready and connected. For Axel, that means checking the PH of his stomach contents via syringe to ensure proper placement of his NG tube. For Jaxon, it means connecting the extension tube to his stomach, flushing it with sterile water, then connecting the actual feeding tube from the pump. The feed runs over 30-40 minutes. We must hold the baby upright during the feed to prevent vomiting from acid reflux.
- 8:30am-9am: We continue holding them up for an additional 20-30 minutes after the feed has ended, again to prevent vomiting from reflux. They each still vomit 1-4x per day no matter what we do, but holding them up drastically reduces the amount of throw ups. They need to gain weight well, so we gotta keep the most calories we can in them!
- 9am: wash all feeding tube parts, disconnect them from baby (more screaming).
- 9:15am-9:45am: I pump milk (I try for every 3 hours but at home this realistically does not happen. I pump 5-7x a day still to produce what we need for twins!)
- 10am-11am: playtime/nap/etc time. At night, this is often our only hour to sleep.
- 11am: Time to feed again! We have to wake the boys up and feed them every 4 hours (from previous start time). Often they wake up at this timeframe anyway, but even if they don’t, we have to. Sleeping in 1-2 hour chunks is really, really, really hard. Chris is so kind to me and often will let me sleep longer and tackle both boys feeding by himself. How he does it, I don’t even know, because I can’t!
This 4 hour cycle repeats all day, every day, 24/7…
And let’s not forget there are days where things don’t even go according to this fucked up plan. Such as today, where the boys have vomited after every feed everywhere.
It’s been about 3 weeks now of being at home and it is exhausting for my husband and I to do this. I don’t know how much longer we can continue. I am hoping in a few more months we can stop waking them every 4 hours at night.
How to Know How Much to Feed
This is a tricky thing. For many “normal” babies, being fed on demand means not having to worry about millilitres taken, obsessing about weight gain or having to set multiple alarms to be sure that no more than 4 hours passes from the start of the last feed.
Our twins also display hunger cues pretty much all the time, even when they aren’t hungry. Some of this is just confusion. Sometimes it is real hunger, outside of our 4 hour schedule, because like regular babies, they also go through growth spurts and want extra food sometimes. It is so hard to know whether to feed them or not. When we are wrong, it ends in overfilling them, vomiting and crying, unhappy babies.
We try to stick to a 4 hour schedule like the NICU had. Which means we feed them their “4 hour volumes” every 4 hours, unless it really seems like they’re hungry earlier.
For this, we calculate their TFI (Total Fluid Intake) based on their current weights and divide that by 6 (for 6 feeds per 24 hours) to determine how much to feed them every 4 hours. Right now that’s sitting at about 108-115ml, although the jump to this amount seems not to agree with them and be too much to take in. We are experimenting with feeding every 3 hours instead with smaller volumes, but it’s really an experiment at this point.
The Emotional Toll of Tube Feeding Your Child
This section is really important and often overlooked. Do you want to know what it feels like to tube feed your child? Horrible.
Here it is: the most simple act of caring for a baby. Feeding them. And it feels like you can’t even do that.
For me, I was so set on breastfeeding even before I became pregnant. I just knew I would do it because I thought it would be the best thing to do. Even with my very sick premature twins in the NICU, I was set on breastfeeding. Even when they told me they had brain damage and likely would not be able to breastfeed consistently, I tried.
I tried breastfeeding for 5 long, very painful and discouraging weeks. It eventually sunk in that my twins were not going to get it, and definitely not to a level adequate enough for them to gain weight or get out of the NICU.
They then told me the hospital would be “amazed” if both boys came home eating by mouth at all due to the severity of their brain bleeds. Most kids like them would require G-tubes. Before then, the thought of coming home with a feeding tube never crossed my mind as an option.
So I switched to bottles (of my milk). I just assumed those would work. I didn’t think twice about it. You hear of breastfeeding not working out all the time, but not being able to take a bottle either? No way.
Weeks dragged on. My twins went past term, then way past term at 7 weeks corrected… still nothing.
Giving in and accepting that they require feeding tubes to SURVIVE was hard. It was hard to believe that my previous all-natural wishes led us here, to a path so very unnatural and clinical.
I am typing this right now as my twins “eat” beside me, hooked up to their tubes in the middle of the night at 2am. I tried to bottle both but neither would wake up, even with diaper changes, etc. So here we are. I watch the pump run as I type and make sure Axel doesn’t pull out his NG or aspirate into his lungs.
I watch a machine do what I could not do for them. FEED THEM. That most basic piece of care that most parents take for granted.
On one hand, I love the tubes. I love that my twins can receive all the nutrition they need and grow big and strong, even if they refuse to eat. I love that putting on good weight will help their development, already a touchy subject due to their brain complications. I love knowing the feeding tube could be helping with that, helping their brains develop and heal.
But I also hate it. I hate that I cannot feed my children. It’s a horrible thought to have as a mother.
It’s also incredibly hard hearing them scream and cry for up to 30 minutes before the feeling of fullness kicks in. They cry, they cue that they’re hungry, but since they won’t eat by mouth anymore (after we try with the bottle), we have to wait for the tube feed to deliver enough to make them feel full which can take a long time. We hold them and try to soothe them, but nothing really works because it’s one of their most basic needs: crying when hungry.
I also hate the thought of going out in public. It’s one thing to want to normalize babies with higher needs like mine and share them with you through this website, but it’s another thing entirely to have the courage to connect the extension cable to Jaxon, check the PH of Axel’s NG, whip out a plastic feed bag and electric pumps and tube feed my children in public. No way, Jose, I am NOT ready for that anytime soon. So far we have managed to avoid that when going to appointments, being able to bottle small portions into them when out and then topping that off with a full feeding after rushing back home.
What Does the Future Look Like?
I ask myself this every single day. Honestly, no one knows.
We are seeing an Eating Skills team (along with OT, physio) through the hospital to hopefully, eventually, teach them to eat. This may not be soon enough for them to ever take a bottle and it may instead focus on getting them to safely and adequately eat solids well enough to ditch the feeding tubes by their 1st birthdays or soon after that (really 15 months old as it goes by corrected age).
The thought of having these feeding tubes for another 9-12 months is quite honestly heartbreaking. But, we will do what we need to for these boys. I just hope their quality of life improves as they get older, instead of worsening.
The hardest part of all of this is knowing the first prediction the doctors made came true. That they would never eat on their own. And now, here we are, with that as our reality.
Their other predictions like being unable to walk, or intellectual challenges, are still unknown. But will they come true too? Only time will tell and that is THE single most difficult thing I have ever had to go through in my life. To wait for disability to show itself, to reveal itself in the months and years to come.
Most of the time, we try to stay positive but sometimes that is impossible to do. Publicly, I share funny photos. Privately, I spend a lot of time crying, worrying, stressing and being exhausted, emotionally worn out and feeling like a piece of crap.
All the nurses, doctors and social workers tell us that nothing happens all at once. That each step into the world of disability is slow and gradual, and that we will adjust to it as we go. The slowness is a blessing, they say, so that we can accept our journey along the way. That’s proven true with what we’ve already encountered, but it doesn’t make it any less isolating, emotionally difficult or traumatic.
Somehow, life goes on. Time passes. I can only hope it gets easier as we continue on this journey.