Archive for Feeding

Let’s change everything

By Goddess in Progress · Comments (4)·   November 26th, 2012

Hooray for progress.

And yet, it makes everything

more complicated.

Ellie has made, by our standards, some really great progress in the last few months with our new feeding therapist. Back in August, she was just barely starting to show interest in bringing foods anywhere near her mouth. Now, if she’s in a good mood (and adequately entertained with toys, and the adult in question is feeling particularly persistent), we can get anywhere from 1 to 3 ounces of actual food into her. I’m talking yogurt and thicker baby food purees, not a hamburger, but still. It’s a big step forward.

Sweetest girl

But now, it’s time to get serious. Up to this point, a lot of what we’ve been doing has been just experimenting with flavors and textures and the simple sensation of having something in her mouth. In a sense, no pressure. Just playing around. But now that she will actually consume a measurable amount of food by mouth, we need to start pushing to see what she’s capable of.

The first order of business is to reduce her daily intake of formula. Not just so that she won’t be over-fed with the additional calories of yogurt, but in the hopes of getting her to experience real hunger for the first time since she was a newborn, further hoping that it will motivate her to eat more readily. But it’s not just an even reduction across the board – if we are taking 100 calories of formula away, we’re going to take most or all of that away from the feeding prior to any attempt at feeding her by mouth. Again, in the hopes that she’d get good and hungry. That adds an element of planning ahead that is a little tricky in our current modus operandi, but OK.

In the meantime, the nutritionist wants us to switch to a different type of formula now that she’s older. That’s fine, but the new formula (really, just Pediasure) is much more calorically dense than the old one. Which means she requires a smaller volume to get the same number of calories per day. That’s also fine, except that it means formula intake alone is no longer enough to keep her adequately hydrated, so I’ll also have to give her supplemental water – through the tube, because she doesn’t really drink it yet. Yet another thing to keep track of.

Oh, and the actual “feeding” part of feeding therapy is no walk in the park, believe me. It’s incredibly slow and enormously frustrating for me. Ellie doesn’t much love it, and some days she’s especially toddler-rific and just ain’t having it. It requires a lot of distraction and entertainment and coaxing, and even then, I can never manage to get as much into her as the feeding therapist does. So, you know, no pressure to get those calories into her that you’re taking away from her formula or anything.

Skeptical yogurt face

I said to M, this is like potty training on a much larger scale. Yeah, it’s nicer and easier to have a potty-trained kid than to have one in diapers. But the PROCESS of getting from point A to point B… wow, does that suck, and makes you (temporarily) wistful for the easy days of diapers.  Same thing here, but it’s going to be a lot harder and take a hell of a lot longer. Yes, obviously I want Ellie to get to the point of being able to eat and drink everything she needs without the tube. But the fact is, the current usage of the tube is actually pretty easy. We’ve got it figured out, it fits into our lives. This in-between, in-progress phase? Exciting and all, but holy crap is it going to suck for a while.

(And, by “a while,” I’m guessing probably two years, if all goes well. In case you were wondering what kind of pace we’re talking about, here.)

I’m still waiting to get the new formula from our medical supply place. Nothing about that is ever easy – the complex-care pediatrician has to check the nutritionist’s notes and call in the “prescription” before I can order a month’s worth. But once it’s here, I think I will literally have to write out our daily feeding regime and have that thing laminated and posted in the kitchen. No more auto-pilot for me.

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Categories : Child Development, Feeding, Toddlers
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Ain’t nothing but a g(tube) thing – your questions, part 2

By Goddess in Progress · Comments (5)·   August 23rd, 2012

I believe this covers most of the g-tube questions from you guys (minus a whole thing on feeding therapy, which I will get to), but please let me know if there’s any more questions! Go back if you need the post on the basics, or the first set of questions answered.

What’s the story with her reflux? Why did the food have to bypass her stomach and how did you know it was OK to go back to it?

I mentioned in the last post, when discussing hunger, that Ellie spent some time with a tube that bypassed her stomach entirely. This was while she was in the hospital, and it’s called an NJ tube (nasojejunal, if you want to know). This is because her reflux was SO BAD, she would literally vomit up all of her formula/breastmilk if it went into her stomach at a rate greater than 15 mL/hr. (For the metrically challenged, that’s ONE TABLESPOON.) And even with the NJ tube, which meant her stomach never even had any food in it, she would still manage to retch up stomach acid several times a day. It was awful, she was miserable, and the reflux was certainly a big contributing factor towards the oral aversion that developed when she was a newborn and stopped taking bottles.

So, though she was getting the g-tube placed because she had such an aversion that she refused all oral feeds, it would have done no good at all without the second half of her surgery – a Nissen Fundoplication. It basically means that the top entrance to her stomach wasn’t keeping anything down, so it was sort of wrapped around itself to tighten the opening. So, things can go in, but they can’t (easily) come out. And it worked like a charm, so putting food into her stomach was not a problem at all. Yay! Unfortunately, for the first few months after the surgery, she would still have random episodes of gagging/retching throughout the day. It was awful to watch, but blessedly went away on its own by about 6 or 7 months old.

In theory, that means not only will she not puke up all of her formula, but she won’t puke… at all. It means she doesn’t burp. It means she can never have carbonated beverages. In reality – she manages to throw up a little every now and then, like when she had a stomach bug. Still a whole lot less than she did as a newborn, plus without all of the random dry heaves.

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How long did it take you to feel comfortable feeding using the tube? Do other people help to feed her (M, the kids)?

It was all a learning curve, but I’d say it took a few months to get comfortable with it. When she first came home, I was terrified of the darn thing. Not only for the heebie-jeebie factor, but because the surgeons had basically said “LEAVE IT ALONE” while it heals. So I was kind of scared to even go near it for a while. After our first checkup with the surgeon, maybe a month after we got home, I knew it was fully healed and got more tips on how it worked (and that I was really unlikely to hurt anything or mess it up). Otherwise, confidence comes with time and experience, right?

By nature of the fact that I’m a stay-at-home mom, obviously I do the vast majority of her feedings. But M is, as in many things, equally capable and will do whatever ones he’s at home for. The kids, well, they’re only 5. I limit their participation to fetching and carrying things. We’ve taught a handful of other people do feed her, as the need arises. And not just my mother-in-law and sister-in-law, the pediatric nurse and MD. No, we even taught my cousin’s 12-year-old daughter when she babysat for us the night of my sister’s wedding last month. She seemed a little spooked and we told her she really didn’t have to do it, we’d take care of it when we got home. But dammit, the girl was bold and fed Ellie with no trouble at all. (We paid her so well at the end of the night that my cousin yelled at me via text message.)

Truly, feeding her is not difficult. The bigger obstacle is whether it freaks you out (for instance, my squeamish mother has not done it yet). The actual logistics are not hard.

Does her lack of oral feeding impact speech development at all?

You might expect it to, but I’m not sure whether it’s had a huge impact. At just about 18 months, Ellie has a handful of words – up, hi, bye-bye, light, off, doggie, woof-woof, and a handful of others I can’t remember right now. Is she exactly where she should be for her age? No. But, frankly, I’m not sure there’s any aspect of her development that’s exactly age-appropriate. That said, I’ve known plenty of less-complex-needs kids who have fewer words than she does at this age.

So, chicken or the egg? Are her delays interconnected because one influences or detracts from another, or because they’re all connected to some underlying-but-nameless condition? Who knows. But while you might expect an oral-aversive kid to have oral-motor and speech issues, I frankly don’t think they’re nearly as bad as they could be.

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What is the biggest challenge? What are the up-sides?

The biggest challenge is not the tube itself. Like anything, I’ve learned how to use it, so it’s just one part of my daily routine, and not a particularly difficult one at that. I think the biggest challenge is the unknown – how on earth do you teach a kid to eat? How long will it take? Am I doing it right? Will she ever be able to eat normally? What will her development look like as she gets older? That’s the hard stuff, not the tube.

The up-side is that I always know she’s adequately nourished and hydrated, since I’m the one who put it into her stomach. I don’t have to fight with her to take medicine if she needs it – it just goes into the tube. Technically, she doesn’t even need to be awake to be fed. So, if something funky happens with the day’s schedule, or she’s sleeping off a stomach bug and I want her to get some Pedialyte, or if we just have to be in the car when she needs to be fed – no problem.

How do people react when they notice the tube? Do you spend a lot of time explaining? How do Rebecca and Daniel respond to the tube? Do they think it’s something special and cool about Ellie, do they not notice? Are they jealous in some way?

Yeah. I live in New England. While Yankees have a reputation for being cold, what they really are is private. Minding one’s own damn business is a major virtue up here. Which means: nobody says a thing. Like, ever. No one over the age of maybe 5 or 6 has ever simply seen me feed Ellie and directly asked me what I was doing. And it’s not as though I hide anything. I mean, I suppose I’m relatively discreet, but I certainly don’t leave the room or put up some kind of barrier.

Every now and then, after someone has interacted with Ellie a bunch of times, and maybe after I’ve brought it up in conversation or said something in passing, someone will ask me a question. But it’s very infrequent. Nobody wants to intrude, nobody wants to stare. And I understand. While I, personally, am more than happy to answer questions and explain what’s going on, I know not everyone feels the same way. I wish no one felt ashamed of it, like they had to hide. But it’s not up to me to dictate how anyone else feels, so there it is.

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The big kids… I don’t exactly know how they feel about it. I mean, we’ve always explained what was going on with Ellie, explained what the tube is for and what it does, all of that.  It does not appear to stress them out in any way, it’s mostly seems like a non-issue. I am sure that they notice it as something different about Ellie than other babies, but to them it seems as though it’s just… different. Not good or bad, just different.

Or, at least, I think that’s the case. I haven’t specifically sat down and asked them how they feel about it, but they appear to have taken it all really well in stride. Have I mentioned recently that they are really awesome kids?

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Categories : Feeding, Toddlers
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Ain’t nothing but a g(tube) thing – your questions, part 1

By Goddess in Progress · Comments (5)·   August 16th, 2012

OK, onto the next set of questions! I’ve tried to group them together thematically. I won’t get to all of them today, but it’s a start. [If you missed the post on the basics of our feeding setup, check it out.] Here we go!

What is she fed / how much / how often / how do you know how much to feed her?

Ellie gets regular, over-the-counter formula – Similac Go & Grow, if you really want to know – though we get it every month from the medical supply company, so it’s covered by our insurance. Total by-the-box preparation, no added calories or anything. We see a nutritionist regularly to track her growth and adjust the amount as needed. It has been a slightly tricky in that Ellie seems determined to be very, very short. So, when the doctors in the hospital insisted she be on high-calorie formula before she came home (oh, how they LOVE high-calorie formula in the hospital!), she had absolutely no trouble putting on weight. She rocketed up to the 50th percentile for weight, but OOPS, remained below the first percentile for length. So the nutritionist helps us find a balance wherein she’s getting adequate nutrition and hydration, but not over-feeding for her shrimpy frame. There’s a lot of math and plotting points on various charts and curves, I mostly just program in the amount the nutritionist tells me to. We’ve now got her a little more synced-up, so even though her height is still below the first percentile, at least her weight is now hovering closer to the 10th, so she no longer looks like a sweet, curly-haired potato.

Feeding

At the moment, she gets about 7 ounces of formula each time (220 mL, if you want to get really precise), five times per day, which works out to be every three hours during the day and nothing overnight. She gets “bolus” feeds, which means that each feed runs over a relatively short period of time (in her case, around 20 minutes).  Some tube-fed kids need to be fed extremely slowly, or even continuously for most of the day, but she tolerates the bolus feeds just fine.  The every-three-hour schedule is mostly habit, I think. I suppose I could try to switch it around to four feeds per day every four hours, but this seems to work well.

Does she ever indicate that she’s hungry? Does she show any interest in food?

Short answer: no.  There’s certainly no noticeable change in her behavior as it gets close to time for the next feed. I don’t think she has demonstrated hunger since she was about three weeks old and they first gave her the NJ tube that bypassed her stomach and dripped the milk straight into her intestine (in an attempt to deal with her epic reflux). She was wicked cranky that first week, because I think she was constantly hungry. But it faded and I’m not sure she’s been truly “hungry” since.

The closest we get to her “noticing” that she has an empty stomach is how she sleeps. For instance, we typically do the last feed as she’s going to bed. Except, sometimes the timing of the day is off and that last feed gets pushed back later than usual and maybe… ahem… maybe we sorta-kinda forget to push “go” on the pump. And then wonder why on earth that kid isn’t asleep yet. Happy enough, but not asleep. Oh. Right. Whoops. Forgot to feed her. Sorry, kiddo.

In general, her only interest in food is that it’s something she can grab and throw onto the floor. She is *just* starting to mimic eating and bring things towards her mouth and lick them, but it’s nothing like the typical baby/toddler who screams if you don’t share every bite of your food with him. Remember: she has absolutely NO association between food and mouth and taste and full stomach. NONE. No concept. All she knows is that if something is loose in her mouth, it’s scary and unknown and makes her gag. It blows your mind if you think about it.

Feeding

What’s the prognosis for her learning how to eat? Will she have the tube forever? If/when she does decide to eat on her own, how does the tube come out?

I won’t get too much into the feeding therapy stuff at the moment – that’s a whole separate post. But suffice it to say that our new feeding therapist (seriously, a WHOLE ‘nother post) said that, barring any physical barrier to her being able to swallow or other medical/physical/mechanical obstacle, expect it to take at least a good two years to teach her how to eat. That’s two years from right now, not two years old. Yeah.

I have no idea what the future holds, but I’m working under the assumption that she will eventually learn how to eat and drink, and will eventually not need her g-tube anymore. When that happens, they’ll leave the button in for probably a few months, just to be really sure that she’s able to take adequate nutrition by mouth. Then, we’ll just take the button out and cover the stoma with a bandage, and see if it closes on its own like a pierced ear. If not, they’ll briefly put her under anesthesia at the hospital and stitch it closed. I can only imagine there would be a scar left behind, but nothing too bad.

A slight aside – when the hole for the tube was first created and the button put in, those layers of tissue (skin, muscle, stomach, etc.) all sort of sealed together at that spot when they healed. So even though the hole can be closed, in that particular place on her abdomen, the side of her stomach will always be sort of fused to the muscle/skin/tissue right there.

If, for some reason, she is never able to take enough food by mouth, or if it takes her an exceedingly long time, she can theoretically be fed this way indefinitely. There are plenty of teenagers and adults with feeding tubes out there. I’m hoping Ellie won’t be one of them, but you just never know.

Does she sit still when you feed her? Does she pull/mess with her tube?

Feeding

Yeah, it was a LOT easier to feed Ellie before she was mobile. She’d sit mostly still, or would be content in a bouncy seat, and there she’d stay for half an hour. NOT SO MUCH ANYMORE. Now, feeding her means I have to keep her contained. When we’re on the go, she’ll be strapped into her carseat or stroller. If we’re at home, I typically put her in her high chair in the kitchen. Not only does it keep her in one place, but I’ll sometimes work on some feeding therapy while she’s there, which tries to connect the feeling of a full belly with the kitchen and food and all of that. Or, as when we were on vacation a few weeks ago and I didn’t have easy access to any of those things, I almost literally chased her around with the backpack for 20 minutes as she crawled and climbed stairs while being fed. Believe me, she had no interest in sitting quietly on my lap for more than about 10 seconds at a stretch.

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She does mess with the button and tubing, though not too much. I wonder if the button is a little itchy sometimes, or if it’s just a curiosity, but I am glad for our taped-down gauze setup so it’s harder to really grab. And if the actual tubing is in sight, she’ll definitely grab it and swing it around and otherwise threaten to yank it and make a giant mess. It’s a blast.

Feeding

Alright, that’s enough for today. Keep up the questions if you have them, and I’ll keep writing!

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Tubie life

By Goddess in Progress · Comments (10)·   August 8th, 2012

I’ve been meaning to write a post about the day-to-day of life with a g-tube-fed baby/toddler, but find I’m at a loss for where to start.

tubie

So, I’m coming to you! Please leave any questions you might have in the comments so that I can find a focus for this post. What are you wondering about tubie babies? How did we get here? Logistics of feeding a kid not-by-mouth? Nitty-gritty of what it looks like and what buttons to push? How it makes me feeeeeel? Ask away, give me ideas. No question is stupid, though more-specific questions will be easier to give more-specific answers. Obviously I can only provide answers from my own experience, but I’ll do my best.

Ready, go!

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Feeding minus hunger

By Goddess in Progress · Comments (7)·   July 15th, 2011

One of the strangest part about having a kid who is fed exclusively by g-tube is how removed hunger is from the entire equation.  I don’t time her feeds based on when she seems hungry, I do it by the clock. I don’t increase the amount she gets because she’s finishing her bottles faster, I do it because a doctor and a mathematical formula tell me to. Honestly? I have no idea if she ever feels hungry.

When I stop to think about it, it kind of blows my mind.

With my older kids, I have really wanted to make a point of letting them listen to their own bodies to know if they’re hungry or full.  I have my own life-long issues with food, and I’m hoping their relationship with it can be a little better than mine. I didn’t go to great lengths to get them to finish their bottles as infants, but when I saw they polished off a quantity with ease, I might start pouring larger amounts. I don’t insist that they clear their plates at dinner. If they tell me they feel full, they are welcome to be excused from the table. If they’re still hungry, they can have more.

Ellie is a different thing, entirely.  She was sent home on one quantity, which we stuck with too long and her growth slowed down.  So we upped it, somewhat dramatically. Her weight gain took off. Everyone was happy, they love to see a baby gain weight. Hooray, weight! Except… she’s quite small, length-wise. She comes in under the first percentile for length, yet she’s close to the 50th percentile for weight. I know everyone loves a chubby baby, but I couldn’t shake the feeling that we’re basically (gently, and with all good intentions) force-feeding her.  Way more than her body might actually want.  While she doesn’t protest her feedings in any way, I will also point out that I have (twice, oops) forgotten a feeding and done it more than an hour and a half late. She didn’t make the slightest fuss, could have cared less.  Weird, right?

Tube time

To add to the confusion, we see so many darn doctors, no one quite wanted to take the lead on telling us how much to feed her. Finally, this week, we had our first appointment with the Pediatric GI doctor.  Finally, someone who was willing to make the call on weaning off of the high-calorie formula. And while Ellie technically gained the exact amount of weight “they” like to see for a baby her age (30 grams per day for the last month), the fact that she isn’t getting taller at a comparable rate would seem to suggest that maybe her body just doesn’t want to grow that fast.  So, we’re backing off a little (don’t want to overreact, obviously), and will check in again in a month.

We also finally had an appointment with someone from the Feeding Team, a Speech-Language Pathologist who has seen Ellie since her first swallow study.  Unfortunately, once it was decided that we were taking the surgery route, the behavioral side of the feeding equation was all but dropped. We were more than two months post-op before actually seeing the SLP, who was clearly disappointed that we’ve made no attempts at oral feeds in all that time. Not critical of me, exactly, more frustrated that the ball had been dropped in all of the medical hoopla.

Believe me, I am frustrated, too. The thing about having a baby in the hospital, especially for an extended period of time and one who comes home with unusual needs, is that it’s easy to find yourself in a very passive position as a parent. You’ve gotten so used to the doctors being in charge, you just assume they’re going to continue to tell you what you need to do, when you need to do it.  The truth is, doctors and hospitals have lots of patients, and are not going to have the urgency about your own kid that you wish they would. That’s not really meant as a knock on our many wonderful doctors. It’s just the simple truth that you need to be a squeaky wheel if you want anything done in a reasonable amount of time.

All of that is to say that I went to Target and bought a few bottles today. Starting this weekend, we will be (re-)introducing Ellie to bottles. Every day, I’ll put a couple of ounces of thickened formula in a bottle and give Ellie 10 minutes or so to do with it what she likes.  At this point, she has pretty much lost what was once an unconscious reflex to suck and swallow. She has to learn it all over again.  So when I give her this bottle, I have zero expectations. She can chew on it, she can push it out of her mouth, she can chew on it some more. The first goal is to simply get her used to this strange thing being in her mouth, to try to make it a familiar and comfortable feeling. She’s got a rather sensitive gag reflex, so it’s all about going slow and keeping it positive.

It’s going to be a long, slow, probably immensely frustrating road as we work towards “normal” eating. I don’t know whether we’ll ever get there, or if we do, how long it will take. But it at least feels good to take some first steps.

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Categories : Feeding, Infants
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The Magical Mystery Patient

By Goddess in Progress · Comments (40)·   April 30th, 2011

When people ask me what’s wrong with Eleanor, why she’s in the hospital, I stumble a little bit. I say “um” and “well” a lot, before finally coming up with “she doesn’t eat.” That is simultaneously true, and completely NOT the whole story.  I mean, the feeding stuff is what keeps her admitted to the hospital instead of at home, so that’s the big focus for now.

But even that single piece of the puzzle is a little hard to explain. In a nutshell, she has never taken feeds well by mouth, and was aspirating liquids when she tried. In addition, she has extreme reflux, which makes it darn near impossible to keep much of anything in her stomach (and is also a nasty deterrent any time she tries a bottle – it all comes right back up). So, she no longer takes anything at all by mouth, and is tube-fed straight into her intestine, bypassing the stomach.  To that end, she is having surgery on Monday. She’ll have a g-tube placed to deal with the fact that she can’t feed adequately by mouth, as well as a procedure called a “fundoplication” to tighten the opening between the stomach and esophagus, to deal with the reflux.  I can barely express the degree to which we tried to avoid the surgical option, but here we are. At least it’s a ticket home. I’m sure I’ll have plenty to say about life with a g-tube baby in the weeks and months to come.

After all this time and the unbelievable number of tests she’s had done, Ellie has no single, consistent, comprehensive diagnosis. She remains, for the most part, a collection of unusual symptoms and characteristics. Now with a few inconclusive test results thrown in. While the feeding problems are our current focus, it’s entirely possible that they are simply a symptom of something else.

One of the things the doctors picked up on from day 1 is that she has very low tone. Not in the extremities – her arms and legs move pretty well and are reasonably strong.  No, she has low tone in her trunk. Even as a one-day-old newborn, she couldn’t pull her head up the way you’d expect an infant to do. That is still the case at two months old. While most babies are starting to gain some control over those big noggins of theirs (and Ellie’s is bigger than most), hers still flops backwards alarmingly and is only showing slow, small improvement. Is the feeding trouble related to this? Maybe, since the low tone also seems to affect the smooth muscle of her organs (like the stomach). Sure. Possibly. No one can or will say anything definitive.

The low tone seems to (maybe? we think?) be a neurological issue.  Or maybe a genetic one? Let me tell you something about genetics and neurology – these are two specialties that like to run LOTS and LOTS of tests, and then say, “well, we’re not sure. We’ll just have to wait and see how she develops.”  Yeah, that’s the best I’ve gotten over the last two months.  Of all the tests, she had two come back with some kind of abnormal result. She had an MRI that showed “simplified folding” in her brain, but neuro is hesitant to say what that might mean.  And she had a chromosomal study that showed a duplication in one small piece of one chromosome.  Genetics, shockingly, is also hesitant to make any grand statements. Both departments, however, are fascinated by Ellie and want to follow her as she grows. Lucky us?

The area affected in the MRI result might relate to gross motor or cognitive development. Maybe. The genetic duplication has shown some correlation to Autism Spectrum disorders or developmental delays. But we all remember the first lesson from statistics class: correlation does not imply causation. It’s possible our entire family has the same duplication, and you’d never know if you didn’t have this test done. Also, the two test results are not necessarily connected to one another.

I’m sorry, am I being vague? Well, yeah. Welcome to my world.

All I want to know is how this is going to affect my kid, and what that will mean for her life. But, absent a crystal ball, no one can tell me that.  My hunch? I think we will see developmental delays, but I have no idea in what areas or how dramatic. Will she walk at 9 months, at 19 months, or not at all? No idea. Will she have a feeding tube for six months or six years? No idea. Will she talk or read or do multiplication or make jokes? No idea.

She’s a big question mark.  I suppose you could argue that all babies are, that you never know what you’re going to get until it happens.  But when you start out your life with more than two months in the hospital, surgery, and a feeding tube, when you know you’ll need physical and occupational therapy from the moment you get home, and when neuro and genetics find you “interesting?”

Yeah, we’re in for a wild ride.

But let me not forget what is right with my sweet girl.  She is generally pretty mellow, and when she gets upset she is relatively easily soothed. She sleeps for nice stretches of time, even if those stretches are happening during the day instead of at night for the moment. She looks right at you, and if she’s interested, will track with her eyes and move her head to follow an interesting sound (or that pretty baby in the mirror). She passed her hearing test. She likes to chew on her hand. She’s incredibly snuggly.  And if you’re lucky, she’ll give you her sweet, sly smile.

Oh, the smile. It’s elusive. It’s fleeting.  But both my mom and my friend swear they saw it a few weeks ago (while I was in another room pumping, of course).  My husband saw it the next day. It took me a while longer, but I’ve seen it myself. Not just the one in her sleep, and not because she’s got gas. A real, honest-to-goodness social smile.  Not only is it a beautiful thing to see on her sweet face, but dammit, it’s a milestone.  Right. On. Time.

Ellie has her own plan. I just wish I knew what it was.

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Categories : Child Development, Feeding, Hospital, Newborns
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History does, and does not, repeat itself

By Goddess in Progress · Comments (24)·   April 25th, 2011

Eight weeks and two days. That was when I officially stopped trying to breastfeed my older kids.  And that was when I stopped pumping for Ellie.

I first seriously considered stopping about two weeks ago, when my supply officially stopped keeping up and she had her first full formula feed in more than a month.  Seeing the color of formula, not a breastmilk combo, in that syringe pump sent me into an initial wave of tears and had me stepping back. It was so demoralizing to spend so much time and effort on pumping when it wasn’t even enough. Eight times a day, 30 minutes at a time, for that scant two ounces, maybe two-and-a-half on a good day. But sheer volume alone wasn’t quite enough to get me to stop.  I backed off for a day or so, then stepped back in. I wanted to keep going, even if it wasn’t 100% of her nutrition.

But the final death knell for pumping was the combination of our return to the Big Hospital and the big kids being on spring break. Spending that much time attached to the pump went from “challenging” to “ludicrous.” It stopped making sense. I was taking literally hours away from all three of my kids to do it, and was being rewarded with a slowly dwindling supply, anyways.

One of the things that kept me going during previous periods of doubt (oh, and I’ve had plenty in the last two months), was when I asked myself a simple question. If you stop now, will you be able to say, “I did my best?” Before, I never felt like I could say yes to that question.  But today, I’m done with the tears. I’m disappointed, for sure, for a lot of reasons. But I’m done. I did my best.

Stopping isn’t too hard when you never had a gangbusters supply to begin with. I stretched the every-three-hours schedule to every four. Four became five, then six, then seven. Last week was crazy enough that extending the intervals between pumping sessions happened pretty naturally – once I stopped letting my pumping schedule dictate everything else, it took a dramatic backseat to the rest of my life.

I didn’t bother with the “pump just for comfort” advice that everyone gives, because I knew the supply would dry up quickly enough on its own. I’d go six hours, then pump for 35 minutes and still only get 2.5oz. I last pumped at 10PM on Sunday and got a single ounce. It is noon on Monday and I’m not in pain. I’m done.

I’ve saved about a day’s worth in the freezer to give to her next week, for her first feeds post-surgery (yes, she’s having surgery next Monday, more on that soon). I want her to have the stuff that’s easier to digest. But I knew I wasn’t going to be able to keep pumping until then. It was time.

So much for the hooter hiders I made. So much for the unused nursing pillow in the closet. So much for my preparation and determination and dreams of breastfeeding redemption. Life had other plans. Ellie had other needs. So it goes.

Love that hand

I lasted the exact same number of days. I’m even publishing this post on her two-month birthday, just like I did three and a half years ago. This time is different for a hundred reasons, but for one, I’m not beating myself up about it. I did my best. I tried again. I’m done.

Comments (24)
Categories : Feeding, Just me
Tags : , , ,

The Doldrums

By Goddess in Progress · Comments (24)·   April 12th, 2011

I’ve been wanting to post an update, but there has been so little to say.

“How’s Eleanor?”

“Fine. The same. Great, actually. Except for that whole not-eating thing.”

The last 10 days have been the slowest yet.  We were transferred back to our local hospital to… basically… wait.  Just sit and wait.  While she was able to swallow thick liquids at her last swallow study, she did not show any actual inclination to do so. She’d take very small amounts from the bottle, and then her epic reflux would kick in and she’d spit it all back out.  She went on an NG tube, which puts the stuff straight into her stomach, but continued to have bad reflux. She got an NJ tube, which goes even farther than the stomach, putting the formula/breastmilk straight into her small intestine, with the hopes of avoiding the reflux.

It was with this NJ tube that we were sent closer to home, to give her some time to see if the reflux will improve on its own at all.  As for the day-to-day, there’s very little going on.  We go, we visit, we snuggle. We do a little occupational therapy for the major oral aversion she’s developed. We do a little physical therapy, since she spends so much of the day in the bassinet. I put some black & white art cards in her bed so she has something to look at. I sing songs and read Goodnight Moon. But mostly, we just hang out. We don’t get many updates each day, and we don’t expect them.

snuggle time self portrait

It’s been a week and a half of this… nothing.  And, sadly, we have no reason to believe the reflux is improving. Despite the fact that all of her feeds actually bypass her stomach, she still manages to gag and spit up at least once or twice a day.

So, this part may soon come to an end. We will be heading back downtown soon, talking with GI about surgical options like a feeding tube and a tightening of the stomach around itself to prevent reflux. Not exactly the kind of excitement I was hoping for to kick us out of these doldrums.  But, on the positive side, at least it’s action, and it should be action that will ultimately get her home.

One of these days.

Comments (24)
Categories : Feeding, Hospital, Newborns
Tags : , , , , , ,

Mystery boobs

By Goddess in Progress · Comments (15)·   March 30th, 2011

Oh, pumping. You have such an amazing way of messing with my head.

Why yes. I’m still exclusively pumping. It’s been over a month, and here I sit. Half an hour at a time, eight times a day (down from ten, look at how reasonable I’m being!). Every bottle carefully sealed and labeled with the date and time, refrigerated until it can be delivered to the hospital.  It’s a glamorous thing, believe me.

I’m keeping up (just barely, for now, until she grows and they change the quantity again) with what she’s taking. I believe she has had 100% breastmilk for the last three weeks, and there may be a few spare ounces of buffer in the freezer at the hospital. I’m proud of that, and I don’t mean to belittle it. But despite the herbs and supplements and medication and tricks with the pump, I feel like I’m hanging on by my fingernails, just to keep up.

I was feeling particularly panicky the other day, wondering if my supply was dropping, or if I was actually keeping up, so I decided to start tracking. Oh yes, I made a spreadsheet. And while I absolutely see the crazy-making potential, I was already informally watching the quantities every time, anyways. At least now I have real data.

On the positive side, I was able to see several days worth of keeping up with her intake, with a little bit extra. That was helpful and a little calming. But I was also hoping to see some kind of pattern – maybe one time of day when I seemed to get more or less – so that I could anticipate it and feel a little less defeated when the inevitable “bad pump” happens.  Sadly, no dice. I cannot, for the life of me, discern any rhyme or reason as to why some times I get a lot more, and some times I get a lot less (and by “a lot,” know that we’re only talking a range of maybe 20-30mL, and yes I can still easily measure my output in mL).

If I was breastfeeding on demand, of course, I’d never know any of this. It would fluctuate day to day, the baby would eat more or less often, and that would be that. Not so with the pump. This way, lucky me, I get to evaluate myself every three hours, and see if I make the grade or come up short. And if you think this doesn’t have a major impact on my mood when I see the results, you’ve got another thing coming.

But, for now, I keep going. As I said before, it’s one of the few concrete things I can actually do and provide for Eleanor while she’s in the hospital. And while I do not think formula is evil (I have two healthy, brilliant, amazing kids who were almost 100% formula-fed), I do think that there is something particularly good about breastmilk, and I want to give her as much of it as I can.

But after more than 30 days of this routine, it’s still a big mystery to me.

Comments (15)
Categories : Feeding, Hospital, Newborns
Tags : ,

The Power of Positive Thinking

By Goddess in Progress · Comments (38)·   March 24th, 2011

At Eleanor’s last swallow study, two weeks ago, she aspirated both thin and thick liquids, which took her off of all oral feeds until the study could be repeated.  That was, as they say, NOT GOOD.

Today was the repeat test.

She swallowed thick liquids, no problem. Still a little aspiration on the thin, but did great with the thick. She had a nice, strong suck and was able to get a decent volume out of the bottle on her own.

As of today, they started her on bottle-feeds, breastmilk with a thickener. Every three hours, they’ll let her take whatever she likes by mouth, and then give her the remainder of the volume by NG tube.  For her first one, she took almost half. Downright impressive when you realize she hasn’t done ANY for two weeks.

momentarily tube-free

This is progress. SUCH progress, I can hardly tell you. To know that she is making these developmental strides, that even if progress isn’t lightning fast, progress is being made…

Sometimes you don’t realize the extent to which you’re holding your breath until you actually exhale a little bit, or how heavy the load on your shoulders is until it gets lifted.

There are still many steps to go. There may be steps backward, and the ones that go forward won’t be as big or as quick as I wish. She still isn’t home. We still don’t have a diagnosis for what underlying Thing is going on.

But this was a good day, and a very very welcome one.  Thank you for all of the thoughts, prayers, energy, and strength that you sent our way.  I was so proud of my littlest girl today.

Comments (38)
Categories : Feeding, Hospital, Newborns
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