Monday, December 1, 2014

G-Tube Positivity

The G-tube

No parent wants their kid to come home with a G-tube (or any assistive device), but rarely do we have a choice. Wesley has a G-tube, which he received in the NICU, so we're going on 2+ years now. Unfortunately, like most babies who get a G-tube, Wes had really bad reflux and aspirated when we tried to feed him. It sucked, but after 100+ days in the hospital we would do anything to get him home. The doctors will try to tell you they’ll only have the tube for a few months, at most a year. I'm sorry, that's a lie. Once you eliminate the culture and function of eating from a baby’s life, the process of teaching that to them is HUGE. Not only do the muscles in their mouth weaken tremendously, but the flavors and textures associated with food that we take for granted become major sensory issues.

For anyone who doesn't know, a G-tube is a tube surgically inserted into the stomach. All food goes directly through the tube instead of through the mouth. Initially they get a long tube with a port at the end where a small machine (similar to an IV pump) pumps milk into the stomach. There's a pump and a pole that follow them around whenever they're eating. You can also get a little backpack that holds the pump so they can be mobile while eating. After a few weeks you can swap out the long tube for what's called a Mic-Key button, or a smaller port, that's much easier to maintain. Is all of this ideal? NO... we hate worrying about it pulling out all the time (first CON) and Wes having this little white tube popping out of his stomach (second CON). BUT, at the end of the day it's not as bad or intimidating as a lot of people think. In all honesty, it has been a blessing.... 









G-tube Feeding Progression

Wesley's G-tube feedings have gone through a major progression. When we first came home he was on 24 hour feeds.... NOT fun. We couldn't go anywhere without the pump. It’s hard to work on anything developmental (another CON), especially tummy time, when you're connected at the belly and going out is that much more complicated. Slowly, we were able to wean him to three hours on, one off. Then two hours on, two off. Then finally one hour on, three off. This took months of transition and he ate all breast-milk (highly, highly recommend! I pumped for seven months, until I was completely dried up, and froze it all for later). Finally at about a year old we were able to bring him down to 30 minute feeds every three hours. We also started introducing rice cereal into his milk to see if we could bring more solids into his diet. Warning.... do not put rice cereal through the pump! The pump ends up miscalculating the volume/time and they don't get the full meal. That realization led to the biggest transition for Wesley's G-tube feedings.... the 10cc syringe. 

Completely by accident I forgot Wesley's pump and bolus venting tube while out one day and needed to feed him a bottle. I rummaged through the diaper bag and found the 6cc syringe you get with the Mic-Key button set, the one that fits directly into the G-tube. I used that to suck up the milk and feed him….. it worked beautifully! It then dawned on me that I should start feeding him every meal this way, especially since the rice cereal wasn't working in the pump. So, I found a 10cc version of the same syringe and started direct feeds that way and we've never gone back. Now, instead of connecting the pump to feed him his meals, we've transitioned completely to syringes only. Here's where the G-tube PROS begin....

Healthy Benefits of a G-tube

We didn't want Wesley to be on milk forever (my breast-milk ran out around a year) and the Complete and Pediasure milk they typically recommend for G-tube kiddos was way too rich for his sensitive stomach, so what to do? We asked ourselves, what is the first thing you introduce to a baby by mouth (besides rice cereal)? Baby food right? Sweet potatoes maybe.... or applesauce.... something bland with little texture. Well if a typical one year old could eat sweet potato baby food, why not Wes? So, one day we tried it. We bought a jar of sweet potato baby food, sucked it up in the syringe, and went for it. Worked like a charm. I asked my friend who also had a one year old how much food she feeds him for each meal. We made a chart for each meal and started cooking (we make ALL of Wesley's food.... will post separately about that!) and blending. Currently Wesley gets two four ounce bottles of almond milk (morning and night) and ten ounces each of blended fruits, veggies, grains, and proteins for breakfast, lunch, snack, and dinner per day with lots of water sprinkled in throughout the day... all via 10cc syringe fed directly into the G-tube (usually while Wes is in the high chair). PRO number one! As an added bonus, meals this way are virtually spotless. No messy faces, messy hands, messy high chairs, messy floors! Just saying…
Understandably, this feeding method may not work for everyone, but we cannot stress how much this process has positively affected Wesley’s growth and development and what a blessing it has been. He eats nothing but healthy and nutritious food! One of the most memorable things our surgeon told us before we left the hospital was that in order for Wesley to develop and function with his brain bleed, he needed to GROW! Wesley's brain needs constant nutrition and nourishment to allow the healthy parts of his brain to take over for the damaged parts. We took that completely to heart! We bought a scale and weighed him almost every day (NICU habit), kept a chart, and NEVER missed a meal (well almost).

Some Pros and Cons

One major PRO of a G-tube is complete control over the amount of food Wes eats. We know exactly how much food and calories he is eating every single day. This is extremely important for a number of reasons.... weight gain being number one. We've never had to fight with Wes to eat a meal, panicked if he didn't like it or wouldn't eat something, or worried whether he ate enough on any given day. This can also work against you, however (insert CON here)… having complete control means your child has no self-regulation or control of their own. It’s hard to always know how hungry they are, if and when they’re thirsty, or if they need more or less food. This can be a major source of stress, to me at least!

On the flip side, when Wesley’s sick this can again come in very handy (back to a PRO). We asked the pediatrician the first time Wes got sick if we should still feed him regular meals since kids typically don’t like eating when they’re sick. YES! As much as seemed reasonable and that he could tolerate, especially the fluids. She explained that he needs those calories to help him fight the illness and to keep up his energy. Makes sense… and very true, Wes somehow seems to have an abundance of energy even when he’s sick (maybe not such a good thing). In a related sense, the G-tube is also handy with medicine (Wes is on a seizure med that tastes horrible), which can go directly through the tube so he never has to choke or gag on them (another major PRO).  

Meals while sleeping are also an amazing PRO. We are able to feed Wes even when he's sleeping, throughout the night or during naps. This is extremely convenient and important for those of us with weight gain problems because you never have to stress about them sleeping too long and missing a meal (particularly when they’re really little), they can still get the calories in! It’s also nice because a baby with a full belly sleeps really well. When Wes first came home he would get his first meal of the day around 6am... we could plug his pump in without him even knowing and he would sleep right through the whole meal until 8 or 9am. I'm not saying we weren't still exhausted getting up every 2-3 hours to reset the pump throughout the night (putting this on the CON list).... warming the milk, setting up the pump, flushing it, priming it, venting him (letting out any air), plugging it in, etc. PURE EXHAUSTION! All parents go through this with new babies of course. The difference with G-tube babies is this phase lasts a LOT longer… months and months longer depending on how many meals you have to get in per day.

We Don't Force It

With all this said, of course we hope Wesley will eat by mouth sooner than later. But one thing my husband and I agreed on from the start was NEVER forcing Wesley to eat by mouth. His growth and development are our number one priorities always.... at no point will we starve or withhold food from him to force him to eat. We know people who have done this, and yes their kids eat, but many times the kids have sensory issues and weight gain problems. These are two things we are committed to avoiding, along with any trauma this would cause for him (he’s been through enough!). We know Wes can do it, he’s passed his swallow studies and has no medical reason not to eat now. We get frustrated, though, when we hear people tell us we should let him get hungry and that will make him eat. Not true. First of all, Wes shows virtually no signs of being hungry (another potential CON). Secondly, just because he’s hungry doesn’t mean the muscles in his mouth magically know how to process the food or handle the textures and flavors. By not sucking, chewing, or swallowing those muscles become very weak and uncoordinated and the senses become very sensitive… they need practice to be able to properly function to eat full meals (add major CON here). No amount of speech therapy can fix this overnight… all you can do introduce the food, practice, stimulate the muscles as much as you can, and show extreme patience! We’ve learned the more we force Wes to eat by mouth, the more aversive he becomes.

I saw a post on Facebook once that supported avoiding the use of the G-tube to make a child eat. It read something to the effect of "no one wants a kid with a G-tube. You want your kid to be normal." I cannot describe how ANGRY that statement made me. The G-tube has saved Wesley's life. It helps him grow, it keeps him healthy, and it eliminates a stress from his brain that allows him to focus on other developmental areas. Can you imagine hearing someone say “who wants a kid with glasses?” Isn’t that the same concept? Glasses help you see…. G-tubes help you eat. Again is it ideal? No, but I would certainly take a kid with a G-tube over no kid at all! Wes will eat by mouth someday… when he’s ready! So next time you hear a parent concerned about having or getting a G-tube for their child, remember they are many pros to counter all the cons and try to look at some of the benefits you will gain from what the G-tube provides!

1 comment:

  1. Its good to find you! My son was a micropreemie and was diagnosed at about 18 months old with PVL. (Which at the time was a blessing, because we had thought he had hydrocephalus. Glad that the megacephaly was from PVL & not hydrocephalus. No brain surgery! :) ) He didn't have a significant brain bleed (grade 1, resolved by the scan, not at birth just sometime during the preemie stay) so the diagnosis was surprising. But his early life was full of trauma -- eight surgeries in the first year -- so it's not THAT surprising. Now he's two and doing great. G-tube, yes, delayed, yes, but thriving.

    Looking forward to following your journey.