Monday, April 11, 2005

Oh boys! I think he's come round for his noon feeding....

(This is a long post with a lot of graphics, for which I apologize in advance. This post also may not be for those on the squeamish side.)

Now that Little Quinn is nearing the eight-month-old mark, I'm feeling slightly reflective. That eight-month span has, in some ways, seemed terribly short, and there are times when I genuinely feel like it was just a week ago that our second attempt to have a child came this close to ending perfectly before it all went wrong. But then there are times when that night seems like it was a lifetime ago, considering all of the things we have learned and fought and struggled against and come to terms with since that day. I imagine it will come as no small surprise to anyone who knew me in college to learn that, among other changes to my lifestyle, Little Quinn has turned me into both a morning person and a regular church-goer. (That second, though, is admittedly less for religious reasons of my own than for family reasons.)

Anyhow, with all of the medical struggles we've faced with him, by far the greatest single day-to-day challenge to raising Little Quinn has been feeding him. It's a lengthy process that on one level strikes me as a kind of medical miracle, and on another strikes me as a horrible perversion of nature. I'm happy that we've developed this method of feeding an infant who is unable to reliably take food by mouth, but I wouldn't wish it on anyone or their child.

After Quinn's initial set of health problems stabilized, the next problem was determining to what extent the brain damage he suffered at birth would affect his day-to-day necessary tasks. Swallowing, it turns out, is a fairly advanced bit of coordinated activity in the mouth and throat, as is sucking; and without the ability to reliably do either, Little Quinn faced serious problems with feeding. It was determined that he was able to swallow, but not all that strongly, and his gag reflex is very underdeveloped. And this, in turn, meant that in the event that he regurgitated -- a dead certainty with infants -- he would have serious difficulty in protecting his own airway. That's one of the huge "design flaws" in the human body: we take air and food through the same passage. (Note to God: When you get around to designing Homo sapiens v. 2.0, I'd put this bug at the top of the list of things to fix.)

So, because Little Quinn had some ability to swallow and clear his mouth of secretions, the doctors determined that at that time he did not require a tracheotomy. But because his oral function wasn't up to taking food, he did require surgery to put something called a G-tube in his stomach, through which we would give him food through a syringe and an extender tube. At the same time, his esophagus was "looped around" at the bottom, a procedure which would still allow him to take food by mouth later in life but would render him incapable of spitting up (and, we shall see later on, burping). A G-tube is basically a little "port" in the stomach, held fairly loosely in place by a couple of saline-filled balloons on the inside and with a little plastic flap that closes the opening when not in use.

And this, in a photo that I took just an hour or so ago, is what Little Quinn's G-tube looks like.

Here it is, closer:

What's really creepy about that little thing, at first, is that it's not anchored in place. It actually spins freely, and it can apparently be pulled right out of the stomach with little effort. And in the event that that happens, we're instructed to stick it back in there and whisk Little Quinn off to the ER for "reinstallation", because the incision in which that thing is rooted apparently can close extremely quickly. Like, within an hour. No, this has not happened to us yet.

So, obviously the idea is to simply pour liquid nourishment right into Little Quinn's stomach through that thing. One doctor, sensing our trepidation about the whole thing, described it to me in precisely that way, even going so far as to say that "A G-tube is nothing," in one of those doctor's remarks that immediately makes me want to respond, "How healthy are your damned kids?" (Luckily, my inner sense of tact prevailed. The doc was genuinely trying to put me at ease, and there is a sense in which he's right. It's amazing what you can make part of your daily life when you have no choice.)

The reality of the tube in action, though, was quite a bit different.

As I noted above, the looping of Little Quinn's esophagus made him incapable of burping, which anyone who's ever been around a baby will know is absolutely necessary. In Little Quinn's case, the only way we have to get gas out of his system is to hook up his tube and prod his stomach until the bubbles pop out. This was by far the most difficult part of the whole operation in the first months. A baby with a belly-ache is bad, but a baby with a belly-ache and a G-tube is an inhuman nightmare. Patting a baby's back until he lets the gas out through his or her mouth is one thing; literally squeezing the gas out of his stomach through a man-made hole that shouldn't be there in the first place is something else.

The more recent development is that we've had to switch almost entirely to using infant formula for Little Quinn's feedings. This is a disappointment, but it was unavoidable. Since he has never nursed, The Wife has been unable in the end to artifically pump enough breastmilk to keep his caloric intake at adequate levels. We started off having to mix formula into the breastmilk, and now Little Quinn is being fed formula almost exclusively. We take solace in that we got him through his first winter almost entirely on breastmilk.

(I'm pretty militant in my views on infant formula: so far as I am concerned, the stuff should be available by prescription only. It's a food of convenience, and I see little to be gained in giving people "fast food" as soon as they are out of the womb. The topic came up at work recently, and a co-worker sagely pointed out that "Breastfeeding isn't for everybody", as though it's a mere lifestyle choice. My reply was that breastfeeding is for everybody; that's why women have them. Few things make me crazier than to hear a new mother say that she tried breastfeeding but it just "didn't take", and when I ask her how long she did it for, hearing a response of, "Oh, a day or two". This is one of very few topics on which I am pretty militant.)

So, how does a tube-feeding work? What's it look like? Well, here is Little Quinn's afternoon feeding from today, in pictures. It starts off like just about any other time you feed a baby: with the kid in your arms.

But you don't stick the bottle in his mouth, nor do you slide your nipple in there, if you're the mother and you're breastfeeding. Instead, you unbutton his outfit (by the way, the presence of the G-tube makes baby clothes that button in back totally impractical) and hook up the G-tube to the extender tube and syringe. Here's what the whole "device" looks like when fastened.

That white clamp in the middle of the tube is the key to the whole affair. It pinches off the tube, so that the fluid inside cannot run. (And by the way, that little tube -- it's no more than a foot in length, and narrower than a standard USB cable -- costs over one hundred dollars. Imagine trying to afford that if you had no health insurance, considering that those tubes wear out very quickly since you're using them six times a day, every day. We've been going through two a month.)

Now, you can't just start puring breastmilk or formula right in there, because if you did that, the flowing liquid would force the air that's already in the tube into Little Quinn's stomach. What happens first is that we hook up the empty tube, and then open the clamp and gently massage Little Quinn's tummy until whatever's in there comes out:

Hopefully, it's mostly gas, and this will actually explode out and make a pretty funny "burping" noise, but often we'll get bubbly remnants of his last meal. And if we're really scraping the bottom of an empty tummy, we'll actually get stomach acid in the tube. Did you know that stomach acid is the same color as Mello Yello or Mountain Dew? I don't drink either anymore.

After we're done with the "venting", we fill the tube and syringe with food. This means clamping the tube, unhooking him, rinsing it clear, pouring milk or formula into the syringe, and then unclamping the tube, allowing the contents of the syringe to run free. (Obviously, we stick the "exit" end of the tube into the bottle so it runs right back into there.) Then, while it's flowing, we re-clamp the tube. If done properly, this results in the tube containing nothing but milk (i.e., no bubbles). Then, we hook Little Quinn up again, and unclamp the tube, holding it up so that the contents of the syringe flow into his stomach:

Thie feeding method is called "bolus feeding", and it employs gravity: by holding the syringe above the level of Little Quinn's stomach, the milk drains downward into his tummy. However, the rate of feeding can be altered by lowering the syringe to slow it down, and if we actually hold the syringe below the level of his tummy, the milk will actually run out of his stomach and back into the syringe. When doing this, the milk will actually pulsate along with the rhythm of Little Quinn's stomach contractions; and sometimes, if he has to cough or sneeze or has a stronger reflux, his stomach will actually force the milk out at a surprising rate. It will actually form a spout in the syringe, which is one of many fascinating things I'd give anything to have never seen at all.

Due to some principle of physics, I assume, we can never get every drop of food into his stomach, but we can get it so the tube is empty except for a segment close to his tummy, like this close-up of the tube in mid-feed after the syringe has been emptied the first time:

This is where time becomes a factor. A feeding is generally four ounces, but we can't just pour four ounces into Little Quinn at once. We have to do it a little bit at a time (for comparison, that large syringe has a capacity of two ounces, so he gets two of those in a full feeding). We give him a bit of food, and then we clamp the tube and allow him to "rest" for a bit. Then, we unclamp him and again massage his tummy a bit, because bubbles can form in his stomach that quickly. Here's what the bubbles look like in the tube, as we squeeze them out:

That's what burps look like, people.

Now, if Little Quinn is feeling "under the weather", he might cry a lot during a feeding and resist it and even push it back into the syringe while we're trying to get his food into him. Unfortunately, there is little we can do in such cases except wait him out because eventually has no choice but to digest what we put into him. These feedings are very difficult, however, because in addition to having a screaming baby in our lap for what seems like eternity, the milk becomes thicker and thicker as it comes in and out of his stomach. That means it gets harder and harder to get it through that skinny tube. This was true of breastmilk, and it's even more true of infant formula. Little Quinn's feedings used to be like that all the time, but over the last couple of months as he's finally started putting on weight and getting stronger, the "rejection of the feeding" has happened far less frequently. The reaction we like to see is this one:

That's a yawn, not a cry. (It was hard getting the photo to snap at the unmistakable instant of "yawniness".)

It takes about half an hour, if everything goes smoothly, to get a feeding into Little Quinn so that he isn't uncomfortable afterwards. But after the feeding is done, the wrap-up is simple: we disconnect the extender tube, close up the "port", button up his clothes, and then do what parents always do with freshly-fed babies. We rock them to sleep.

And if we've done our job well, this is the reward that awaits us for a completed feeding:

That's a reward worth waiting for, n'est-ce pas?

UPDATE: An update of this post, detailing our use of an electric feeding pump for Little Quinn's G-tube feedings, can be found here.

UPDATE, 30 November 2005: For those who are finding this post via search engine requests for information on the realities of g-tube feeding, I wrote this post to serve as an aid of sorts for parents who find themselves in a similar position to ours, and who might be looking for an actual parental perspective as opposed to the clinical perspective the doctors can give. Doctors can be wonderful, but while they can tell you what to do and how to do it, they generally can't convey what it is like to incorporate the realities of medical procedures into one's daily life. It was in that spirit that I wrote this post, and I am more than willing to answer questions about it via e-mail.

Sadly, I should also report that Little Quinn's story came to an end on November 28, 2005. The details thereof can be found here.


Anonymous said...

Hey there.I ran across this page while researching "g tubes". I have an 18 month old daughter with some kidney trouble and possibly a mitochondrial genetic disorder who has very little appetite. The Dr. wants to put in a g tube pretty much stating that "it's like an ear piercing. No biggie". She can eat, just doesn't eat enough to satisfy the Dr. Shes a breast baby, and that is all she wants. Soooo, my question to you is, is it really that minor? Would you have done it if your precious little boy was able to eat, but was just rather picky and really tiny? Really I'm just looking for a more objective opinion on the whole matter. Dr's can be so jaded- I think they forget that these are real kids.

my email is


I just read at the bottom of your site that you lost your Little Quinn this winter. I am so sorry.

Anonymous said...

hello,there i was searching for the meaning of g tube....

awww,what a sad story.....
im really sorry to hear about Quinn.
u guys keep ur head up...much love from Austin,Tx


Anonymous said...

Just wanted to see how it look like with a baby with the baby is only a month old & is getting one.It's going to be so hard to see him like that!!!!!!!!!His to small for that but it's for the best!Want to take him home!

Anonymous said...

Thanks for the information on the G-tube. My grandaughter who is 2 months old had one installed on yesterday. I was feeling a little bit anxious about the whole situation and decided to browse the web to get more information. Yours was the most informative because you offered the kind of practical information that I was looking for. Thank you!

I was sad to read about your little one though. God's blessings to you and your wife and my prayer is that He will give you strength and understanding to get through this.

God Bless

Anonymous said...

Hii...I'm probably late in leaving a comment, but I know exactly how that daughter has one and shes 2 months old. she has a floppy epaglottis aswell...and her laranyx is weak. but i know EXACTLY how hard it is...anytime you feed them to fast..they could spit up..and my daughter has severe acid reflux.

Danielle said...

Thank you for having this on your site, even after the loss of your beloved son. We just found out that our daughter needs a G-tube and a real-life story was a great thing to find.