Monthly Archives: July 2016

Hi there, it’s me, your friendly neighborhood raincloud

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Why keeping casual conversation casual can be really hard

There are several women in my office who are currently pregnant, have recently returned from maternity leave and/or have toddlers. That translates to a whole lot of talk about pregnancy, childbirth and the newborn stage.

I often don’t join in these conversations. I’m the weirdo standing there awkwardly listening and not saying anything. Not because it’s too painful to talk about what happened with L, because it’s mostly not anymore. Rather, it’s because I don’t know how to insert myself into these conversations without feeling like a giant raincloud.Grumpy

←This is my raincloud face. I think sometimes this is what I look like all day without meaning to.

The things I have to say are most definitely not intended to garner sympathy; they’re things that have become normal parts of our lives. But they are often things that you can’t really just drop casually into conversation with people who don’t know much, if anything, about L’s health issues. For example:

Friend 1: “Wait, they have different mattresses for labor and for postpartum?!”

Friend 2:“Yeah, my hospital did.”

Friend 3: “Mine did too – labor mattresses in labor rooms and postpartum mattresses in separate postpartum rooms”

Friend 4: “Mine definitely didn’t. They just changed the sheets.”

Friend 5: “My labor mattress was sooo uncomfortable!”

Me: “L came so fast that I wasn’t in the room long enough to really notice much about the mattresses and I actually don’t know whether or not they typically have separate rooms for labor and postpartum because I was moved to a NICU mom floor, and also I don’t remember some of the details of the first couple of days because I was in shock from the trauma of it all.”

/conversation killed.

Friend 1: “How long do you have to keep a newborn at home before you take them out in public?”

Friend 2: “Well everybody has different opinions on that. I waited about a month.”

Friend 3: “I wasn’t very cautious with my second, we took her out in public after just a few days.”

Friend 4: “I think anywhere from 2-6 weeks is pretty typical.”

Me: “Oh, I wouldn’t know because my son didn’t leave the NICU until he was 4.5 months old and then we had to be extra careful because every little cold or fever would land us back in the hospital.”

/conversation killed.

Or, they are things that I intend to say in the interest of empathizing, only I have to censor my full experience to make sure it doesn’t come across as “consider yourself lucky and stop complaining because it could be SO much worse” rather than as the relatable “we’re all in this motherhood boat together” comment I intended:

Friend: “My kid is so picky! I don’t know what to do anymore. Dinnertime is miserable. It’s a constant battle and I feel like I’m constantly losing it.”

Me: “I know what you mean. I know it’s normal for toddlers to be picky, but L has such a short list of foods he’ll eat, and then we have to make sure he doesn’t eat things that won’t pass through well, and some things he used to eat he stopped eating when he was puking so much, and he won’t eat at all when he doesn’t feel good, and if he doesn’t eat he won’t grow and will have to go back on TPN and it does feel like it’s a constant battle that’s all on me and it’s all my fault if I can’t have successful meals. I think we have to try not to put so much pressure on ourselves, but that’s really hard.”

Friend: “My child will. not. sleep. I’m at the end of my rope. I feel like I have a newborn again!”

Me: “L won’t sleep without me these days either, which is weird because that never happened before a couple hospital admissions last fall where I slept in the hospital bed with him. He actually wouldn’t LET me lay down with him before that! He never even slept in our room as a baby because he was in the NICU, and then when he came home he was hooked up to IV fluids and for a long time we strapped him into a Tucker sling so we could dramatically elevate his crib mattress to prevent him from choking on his puke in the middle of the night. Honestly though, I miss sleeping in my own bed but at the same time I really like those nighttime snuggles. We just have to do what works for us right now, and trust that it won’t last forever.”

Friend: “My daughter HATES tummy time and I’m worried she’s not going to get strong enough….”

Me: “L couldn’t do tummy time for a long time because he had so many abdominal surgeries and an ostomy bag, so the NICU physical therapy team taught us that there’s this neat way to recreate tummy time where they’re sitting on your lap and not laying down at all!”

Sometimes my potential contributions to these conversations are jokes – to me:

Friend: “You know that newborn smell? I just loooove that newborn smell!”

Me: “Mmmm, me too, the sweet smell of sterile gauze and chlorhexidine….”

Why isn’t anybody laughing?

I’ve never been made to feel like I shouldn’t share our story – in fact, I’m fairly certain the women I talk to every day would be wonderfully understanding and would hate to know that I frequently censor myself. But I often stay silent because it’s easier than navigating the awkward silence or sympathy that would almost certainly follow, or going into a long explanation that immediately switches the conversation from a casual chat among friends to a serious talk focused on me. Many people at my office don’t know about L’s medical struggles, and while it’s nice to be able to have casual conversations about my child rather than always talking about my sick child, sometimes that omission feels like I’m hiding our difficulties, which doesn’t feel great either. It would be nice to be able to have casual conversations about my sick child, but I haven’t found that balance just yet.   

I’ll keep working on it. Until then, please know that if I make a casual comment about something that seems alarming to the rest of the world, I probably really just meant for it to be a casual comment. If I slip up or open up about things that are harder for us than they are for you, I’m not trying to engage you in the Pain Olympics; I’m just throwing in my experience with yours and trying to give and receive the points of connection that we all need. If I’m silent, it might be because there are too many things that I don’t know how to say casually, or because I’m protecting myself or you from a conversation I don’t want either of us to have, or because I’m taking a moment to weigh whether my hilarious medical joke would receive the raucous laughter it clearly warrants or would instead be met with blank stares.

And if I say “I’m tired,” or “that’s hard for us, too,” there may be an entire onion of meaning behind those simple words. Don’t be afraid to ask; I don’t mind peeling back a few layers, and sometimes I need to – but it can be awfully hard to start.  

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A Bit of VyGyvering: Using curly tubing for enteral feeds

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When we switched from TPN to enteral feeds in March, we were supposed to go from the lovely, stretchy, old-school-phone-cord Vygon “curly” tubing we’d been using for TPN to the short, not-stretchy, not-curly, not-lovely, anxiety-inducing-because-who-knows-what-it-will-get-wrapped-around-in-the-middle-of-the-night regular tubing that comes attached to enteral feed bags.

That would not do.

So, after a bit of quick googling that turned up some ideas but no methods or results from trial runs, we decided to try our hands at MacGyvering the Vygon IV tubing so we could use it for enteral feeds. We simply hooked up the Vygon tubing to the G-tube extension on one end, inserted the end of the feed bag tubing on the other end, taped the crap out of it and hoped for the best. And — it has now been approximately 115 nights, if my count is correct, and we have fed the bed exactly once.

For anyone out there who’s interested in trying it, here’s a quick tutorial:

1. Widen this end of the Vygon tubing just a smidge by inserting the tip of closed scissors and spinning the scissors a few times. Bonus points if your scissors coordinate with the color of your feed connectors. Z is stylish that way.

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2. Insert the connector of the feed bag tubing that looks like a geometric purple Christmas tree into this end of the Vygon tubing that looks kind of like one of the Easter Island dudes with giant Dumbo ears. (As you can see, these are very technical instructions.)

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3. Insert the other end of the Vygon tubing into the small port on the G-tube extension.

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4. Tape the crap out of it. Wrap around the connection at the small port, keeping downward pressure on the Vygon tubing toward the g-tube extender, then keep wrapping around all the elbows of the port end of the extension in a way that allows you to come back around the connection point in both directions – so, if your first pass around it is clockwise, make sure you come back around counter-clockwise before you’re done so there’s pressure on it from all directions to keep it in place.

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When you’re finished it will look something like this:

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5. Tape the crap out of the other part too. Take a moment to make a weirdo face while you think about the prospect of being able to sleep better at night, if only your dear sweet child would actually sleep for once….

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6. Proceed with priming the tubing and hooking up as usual. Ta Da!

If you try this out, or if you have other solutions, we’d love to hear about it in the comments!

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Why nothing is simple: Bellyaching about bellyaches

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Recently L has been talking a lot about his belly hurting. He has been vomiting only occasionally, but he tells me frequently he needs to puke. There’s nothing super worrisome going on, but his belly has been swollen and he has spells on a lot of days where he very clearly doesn’t feel good in between playing happily.

Here is a glimpse into why, for us, a bellyache is awfully complicated.

When he tells me his belly hurts or he needs to puke, it could be:

  • A stomach bug
  • His belly hurt earlier and he is three and he likes to repeat things
  • He ate something that would upset anyone’s stomach
  • He ate something that wouldn’t upset most people’s stomach, but it’s upsetting his
  • He wants to get my attention
  • His many supplements and vitamins are upsetting his stomach because he didn’t eat enough
  • He ate too much
  • He ate a normal amount but for whatever reason it’s moving through a little too slowly
  • He wants to watch a movie and I let him have extra screentime when he doesn’t feel good
  • He ate something that got lodged in his gut somewhere and is causing irritation (he once puked a strawberry he had eaten a full two weeks earlier)
  • He has an overgrowth of gut bacteria causing a buildup of gas, which can lead to swollen belly and vomiting (since bacteria feed on sugar and he lives on carbs, and overgrowth is common in guts with poor motility)
  • He recently learned what a “puke bowl” is and thinks it’s fun
  • He needs to poop
  • His belly feels a little off and the easiest way to tell me about that is to say he’s going to puke
  • He doesn’t actually feel bad but he doesn’t want me to touch his g-button right now
  • It’s bedtime and he wants to get out of bed
  • Overnight tube feeds are finally catching up to him and we need to give him a break from them
  • Other very unlikely but much worse possibilities that I try not to think about because very unlikely and also terrifying

Because we hardly ever know exactly which one (or combination) of these things it is, the ideal response could include:

  • Getting him to eat something
  • Not pushing him to eat because it will upset his stomach more
  • Skipping overnight tube feeds for a night
  • Giving him attention
  • Taking him to the potty
  • Letting him pretend to puke in a “puke bowl”
  • Waiting for him to actually puke to clear out whatever the problem is
  • Getting him to eat a balanced, low-carb diet (excuse me while I take a moment to double over in laughter)
  • Letting him have some screentime and teaching him he doesn’t have to fib about puking in order to watch a show
  • Treating stomach bug or bacterial overgrowth with antibiotics
    • This is complicated for reasons I’ll explain in a minute
  • Teach him not to cry wolf
  • Tell him it’s time for bed and he’s not getting up to pretend to puke or poop when he doesn’t really need to.
  • Let him get out of bed to poop or puke
  • Panicking about the potential for very unlikely but terrifying scenarios and rushing to the ER (for the record, we’ve never yet felt the need to do this)

Now, I’m no mathemagician, but if my calculations are correct that multiplies out to roughly 1.2 kajillion possible combinations of cause and response. And the thing is, at any given moment we are very unlikely to know the actual cause, so we have to guess at the appropriate response.

So it gets messy. (Literally.)

Potential consequences of choosing the wrong response:

  • Pushing him to eat when he shouldn’t might make him vomit, which would result in fewer net calories than just letting him not eat to start with. Over time, if this happens too often it will lead to weight loss and dehydration and he’ll have to go back on TPN
  • Not encouraging him to eat when he needs some food in his belly might make him feel worse, and if he misses out on too many calories over time he’ll start to lose weight and he’ll have to go back on TPN
  • We can’t decrease his vitamins, so if it turns out he’s miserable because the supplements upset his stomach, he’ll need IV vitamins and/or TPN
  • Trying to enforce a balanced, low-carb diet will mean he will never eat anything ever except maybe bacon
  • Letting him get out of bed to poop or puke when he is fibbing about it just to get out of bed will lead to neverending bedtimes every night
  • Not letting him to get out of bed when he needs to poop or puke will lead to a big mess and probably permanent psychological scarring from having a terribly mean mother
  • Trying to teach him not to cry wolf might make him feel like he shouldn’t tell me when he really does need to poop or puke. See above re: psychological scarring
  • Skipping overnight tube feeds might make him eat more, and one-night trials of this have gone well (yay!) but if he’s not absorbing what he’s eating he’ll start to feel worse and worse, eat less and less and end up back on TPN
  • Too much screentime will clearly turn him into a hyperactive slush-minded psycopath, because studies
  • Antibiotics wreak havoc on his gut so they are an absolute last resort, and also the usual suspects to treat overgrowth have not been successful for him. If he has significantly increased diarrhea/vomiting due to antibiotics, he will dehydrate and lose weight and end up back on TPN
  • Assuming that very unlikely, terrifying possibilities are not the cause could lead to the worst, or could lead to more surgeries and more lost bowel, which would mean ending up back on TPN, possibly indefinitely.

See any patterns there?

I think the pervasive state of acting within these unknowns is one of the hardest things to really understand for people looking in from the outside. If you’ve never dealt with complex chronic illness, it seems like there should be diagnosis → treatment → health, but for us it’s constant managing and balancing, and I want to really emphasize the constant part of that.

There’s a clear diagnosis, but that diagnosis comes with all sorts of secondary and tertiary issues that are not always so clear. Each issue, even if we can pinpoint the actual source of the problem, may have a different appropriate response for different people’s bodies, or on different days with the same person. Often the best option is choosing the lesser of two evils, which makes those choices extra hard – for example, we are constantly focused on weight gain and nutrition, so in a scenario where he doesn’t want to eat and I suspect pushing food will make him vomit, but it might actually make him feel better or stay the same, it’s hard for me to accept skipping those calories, because I’m supposed to be making him grow. For us, every facet of taking care of L is permeated with navigating those unknowns and balancing acts.

In any case, the vast majority of the time it’s nothing, or at least just the same old stuff. But because of all these unknowns, and because this has been going on long enough, we’re going in for some imaging next week to say hi to the old malrotated small bowel and see what it’s been up to in there. This might seem stressful, but it’s actually a pretty routine thing for someone with significant bowel issues, and I have spent enough time thinking about all the worst scenarios and wondering how to respond to the everyday scenarios that it should actually be a relief to have visual confirmation of what, if anything, is not quite right.

Say cheese, Frankentestine!

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