Little Lewis, Heading to the Hospital

I briefly mentioned in my last post that we've been dealing with some rather serious health issues for Lewis (who is 20 months old now, as a reminder) lately, so here is the TL:DR version.

Gradually over the past 6 months to a year, Lewis has developed a coughing/choking problem. The cough/choke sometimes turns into a cough/choke/gag, and a handful of times it has turned into a cough/choke/gag/vomit. It has gradually been getting worse; I think the first time Rob and I looked at each other and said, "That's weird," was about 6 months ago. We've noticed it when he's eating and drinking, but sometimes also at other times. It's worse when he is sick, and it has gradually been getting worse overall so that he's actually gagged and thrown up a few times in the past month. (One time, with a bunch of french fries at a restaurant-- SARCASTIC YAYYYYY...) It was those occurrences that finally motivated me to call the doctors and get this figured out. We started talking to our general pediatrician and also asked a friend we go to church with who is on the pediatric GI faculty at the U (who also writes for the Biologos Forum!) what he thought. Our GI started Lewis on reflux medication (because it seems like it might be reflux-related?) and sent us for a swallow study a few weeks ago.

The swallow study is where they watch you swallow foods of different textures and thicknesses mixed with barium via some kind of X-ray imaging; they can see if you are having problems swallowing, which is turns out that Lewis is. He is swallowing liquids into his lungs, apparently all the time. During the swallow study he sometimes swallowed liquids into his lungs without coughing, so it looks like he is aspirating even more often than he is coughing/choking. (During the swallow study, he aspirated with EVERY swallow of liquids, actually. He is swallowing solid food with more success.)

Aspirating, it turns out, is very bad and it is something of a mystery as to why Lewis is as healthy as he is, why he has grown so well, why he hasn't had pneumonia, why he breastfed without any big problems, etc. The most likely scenario is that he has been doing this since birth (he hasn't had any strokes or brain injuries that would make him start swallowing incorrectly) so it is indeed puzzling. One factor in his favor is that he has been breastfeeding since the beginning. It turns out that aspirating breastmilk isn't that bad for you; it doesn't easily grow nasty bugs to give you bacterial pneumonia and it isn't irritating to the lung tissues. I am once again so thankful that breastfeeding has worked out for us and our babies; we likely could have been dealing with all these health issues when Lewis was a tiny newborn instead of a strapping, healthy toddler if it hadn't. I don't minimize my own preparation and commitment in making breastfeeding work, but some of it really is out of my hands, and I am so thankful. I'm actually REALLY thankful right now because we are not supposed to give Lewis any liquids but breastmilk, not even water, until we get this sorted out; water in your lungs is irritating and there is a risk of him getting pneumonia from it. He had been down to nursing just a few times a day but I'm trying to get my supply back up and Lewis to nurse more frequently. I will admit that we haven't totally cut him off from water, because he is finding it upsetting when he feels thirsty. It's a risk, but as Rob keeps pointing out to me, he has been drinking water for a year without anything really bad happening. It is stressful, though.

So now we have to figure out why he is aspirating. One possibility is that there is something anatomically wrong (like a cleft or a fistula or a hole or something), another possibility is that it's really terrible reflux or something similar (it turns out that you can get reflux so bad that you lose sensation in the back of your throat and can't coordinate your swallowing), or another possibility is that he just plain never learned to swallow correctly, for unknown reasons. The positive here is that there is a way to fix any of those problems: surgery or medication or feeding therapy or some combination of those. We went to an ENT surgeon recently to talk about all this. They put a tiny camera up his nose and back into his larynx, which was strangely non-upsetting to him. He wasn't sedated or anything, just sitting on my lap. He squirmed when it was going through his nose but he sat there, totally calm, once it was back further (because he can't feel anything back there?). The ENT couldn't see any huge/obvious anatomical problems but he did see a lot of irritation and inflammation like he has reflux. The uncertainty is if the reflux is the original cause of the whole thing or a result of another problem.

Some of you who know me in real life might remember that WAY back when he was 6 months old and we first started feeding him solids, he had some swallowing issues. When we first offered him any foods, he would gag while trying to swallow and then vomit up everything in his stomach. He did that for about a couple of weeks, then figured out how to choke the food down, gagging but not vomiting. A few weeks after that, he figured out how to coordinate his swallowing enough to eat solids pretty normally, and we went merrily on our way, thinking he just had a strong gag reflex and he figured things out. But did he? Or was that part of what's going on now? We still don't quite know.

The next step is that Lewis has to have an outpatient procedure where our GI and our ENT will check things out in more detail. They have to put him under general anesthesia (aaaaaaaaaah...) but I guess it's not exactly a surgery because they are just looking at things? From our end, the experience will basically be like an outpatient surgery, though. They will do an endoscopy and a laryngoscopy (i.e. they will look at his esophagus and his airway in detail) and hopefully we will know where to go from there. If there's something anatomically wrong to fix, we can fix it. If not, we will do feeding/swallow therapy. In the meantime, we keep him on the reflux medicine (which he has been on for a couple weeks now and maybe Lewis is choking/coughing less? I don't know...), he gets to nurse as much as he wants, and we hope and pray that he continues to avoid pneumonia. His procedure is scheduled for May 30, three weeks from now.

We are feeling a bit surprised and shaken by all this, as Lewis has never been sickly or seemed vulnerable health-wise. We are definitely dealing with some stress and anxiety about the situation, but we feel confident in our doctors, the children's hospital here where Lewis will have his procedure, our support structure here in Salt Lake, and the care of the One who loves Lewis even more than we do.

Spring Has Come, At Least For a Few Days

It is so warm! We have had our first 70° days within the past week and have been soaking up the balmy sunshine, at least until the chilly weather returns. (Which is tomorrow, it looks like.) We went to the zoo yesterday and although I don't necessarily recommend going to the zoo on the Sunday afternoon of the first warm weekend of the year (so, so busy! we are at the end of our year's membership at the zoo and I have never seen it like that), we had a fun time. The girls rode the carousel two times each. They like the carousel better than the actual animals, which seems like a failure of some kind on our part?



It's been a nice spring for us. We had Passover...



And then Easter...



And I am having a good spring as far as body image and feeling at home in my embodied self. For starters, I have been exercising very regularly. Since Violet started preschool at the JCC in January, I have been able to put Lewis in the hourly childcare there and work out more frequently than I have in a very long time. Just doing that really has helped me feel better, physically and mentally. And then I have seen actual changes in my body from this on a shorter timescale than I would have guessed. Influenced by Rob and his Crossfit ways and all the hype about Paleo everything, I have been focusing just on strength training. Strength training is like MAGIC, you guys. I'm doing classic weight-lifting things with barbells (not machines) and I've got to say I've never seen any exercise change my body so quickly. And the exercise itself is not burdensome, which is very helpful. I wouldn't say it's my idea of a fun time or anything, but it is infinitely more pleasant than trudging on an elliptical forever or step aerobics or running or things like that. I lost 2 inches around my hips last month, my rings all fit again, people have commented on my face looking thinner, and most of my pre-Lewis clothes fit now. Interestingly, I have not lost much weight since the beginning of the year (that whole muscle vs. fat thing, I guess). We'll see if I eventually do lose weight or change size more, but to be honest, at this moment I don't care very much. I feel better, and I look better.

When I go to the gym, I shower there while Lewis is still in the childcare (because trying to shower at home without another adult to watch him is still AWFUL). Showering in the locker room there has been another body image epiphany for me. There are other naked women in there and it turns out that WE ALL LOOK PRETTY NORMAL. It turns out that women, even women who are exercising at a gym, come in various sizes and ages and shapes and that's totally OK! We're all OK! A nice epiphany.

I've been wanting to get my nose pierced for a while and I had been holding it out as a reward for getting back to my pre-Lewis weight. Lately, I've been thinking that that maybe isn't the healthiest way to go about things. At some level, I don't really control the number on the scale; I control the choices I make about food and stress and sleep and exercise, but it's a complicated physiological equation that translates that to my weight, and my weight per se isn't really what I want to spend my time focusing on. If I want my nose pierced, maybe I should just go get my nose pierced. So I did.

Here's an inside-the-car selfie (about a week post-piercing), complete with toddler photobomb, for you to see the result:

 

It's been about 10 days with the nose piercing now and I really, really like it. It's been healing well (there have only been a couple instances of a child bonking my face -- OW) and I feel like it looks really "right" on my face. A bunch of people haven't even noticed, which is rather hilarious (people are not thinking about me as much as I think they are), and I've seen a few people do double-takes and visibly think, "Did Julia always have that?" And then a few friends have said that they're just surprised I haven't done it before now. I am so happy with it, which contributes to my general positive body image this spring.

Less welcome this spring, we are dealing with some health issues for Lewis. We are still in the midst of tests and procedures and appointments and figuring stuff out; it has happened sort of fast, from our perspective, but on the other hand, it seems to be explaining some weird stuff that's been going on with him for months. I'll write more soon when we have more actual information about what's going on. Short, preliminary version: he has some kind of swallowing problem and is aspirating liquids, and we need to fix it. Fixing it will involve either surgery (aaaaaaaaaaaaaah...) or swallow/feeding therapy. UGH. It's definitely serious, but right now the things that need to be done seem pretty clear-cut and obvious. Hilariously, when they gave me the info on the possible swallow therapy, it was for the exact same therapists that I had just taken Violet to for a speech/language evaluation. "BUT I WAS JUST THERE..."

18 Months

Lewis is 18 months old now, halfway through his second year of life and closer to his 2nd birthday than his 1st birthday. This second year of life is so amazing; everyday he opens up to the world a little more, learns a new word, and is a more busy, animated, joyful toddler.



I got rid of the booster seat in favor of the Kaboost recently because I just could not face cleaning all the disgusting crevices of the booster seat anymore. It's a bit of a struggle to convince him to stay in his seat instead of running around the house at mealtime, but he is getting there. If the food is a special favorite of his (the breakfast sausage we get from our local pork guy, or watermelon, or anything sweet I deign to give him) he will gobble it up with concentration; if the food is not so interesting to him, he will often hop down pretty quickly to explore the world. Despite this, I am glad to get one more piece of plastic baby crap out of the house. This time around, I am not keeping much of anything. All the clothes go to other families right as he outgrows them, and I am gradually clearing out all the infant toys and cloth diapers and so forth.



I am not feeling sad right now about Lewis getting so big and outgrowing so much baby paraphernalia; I do not feel nostalgic for the high chair or the jumper or the bouncy seat or any of the other various baby items I have passed on to other mamas as we have finished with them. Part of this is that he is still nursing here and there, we are still deep in the throes of diapering, he still sleeps part of the night in our bed, and so forth; there is still a lot of sweet, cuddly baby in him at this stage. (Although if he follows the same pattern as his big sisters, he only has ~6 months left of nursing and ~1 year left of diapers-- mind-blowing!) The other part of this is that he is so amazing right now. I love this second year of life, with all the language learning and exploring and engaging with the world.



The language explosion is just amazing; it seems like he is literally learning a new word every couple of days. He says "nana" for banana, "baba" for apple, night-night, nurse, go, shoe, and funny versions of all of our names. I think his latest word addition is "AH-ter" for water. Another recent one is dog; for the first three days, he pronounced it as "DERRRRG" but then he shifted to a more normal pronunciation. Whenever he closes a door or puts something away or throws something in the trash, he lets out a complacent, self-satisfied "there!" Both of our girls as toddlers said "uppy!" when they wanted to be picked up, but Lewis has gone with something more like "upf!"

I will pick you up as much as you want, amazing boy.

Seven Years of Grace

Last week Grace turned seven. Seven! Seven is starting to feel like a big number, like a big grown-up girl, like she is emerging from the world of being a little kid into graceful girlhood. She is our full-of-grace Grace.



Rob was away in Haiti for her actual birthday on Wednesday, as well as her birthday party on Friday. We missed him but we managed to have a fun time celebrating anyway, and then we had yet another birthday celebration the day he got back when she opened her presents and we had one more round of cake and singing. We had her birthday party this year at one of those indoor bounce house places and invited friends from school and church and just around town.



I do so love a fun invitation. I love beautiful cards and lovely paper products and invitations and such; these were designed by a helpful, nice seller on Etsy and then I had them printed on postcards. We did a pretty big party this year (again? I seem to keep throwing these giant birthday parties) because it seems like a good age to still have big, inclusive parties with both boys and girls, and also because it didn't change how much the party was going to cost to invite a ton of kids. I imagine we will be shifting toward more intimate parties as she gets bigger and more immersed in her own social world, but I was full of joy this year to see her run around with a gaggle of friends of every type.

I feel a lot of shifting in what it means to be Grace's mother, and even writing about her here feels like something new to navigate. This post on Grace's birthday is my 300th blog post and writing here feels different now than it did when she was a baby. I've seen other mothers who write online say they aren't going to share as much about their children as they get older, and I will admit that I didn't quite get it and maybe rolled my eyes. I am starting to feel the same thing, though; it becomes more obvious with every passing day that Grace is her own person and her story is all her own, not mine.



Who she is today is less wrapped up in who we are together as a mama/little-person pair. We made each other in a very real way, she shaping me no less than I have shaped her, but she is striking out in the world, a world that I think should be staggered by how empathetic and smart and beautiful and amazing she is. Her usual partners for walking to and from school happened to all be unavailable one day this week so we decided she could walk home by herself (well, actually, with the mass of other children walking home along the same streets, but by herself in that none of them were charged specifically with walking with her). She has her own voice and her own future and her own hopes, and I am so happy to get to be here in the thick of who she is becoming.

Sending Someone

We are getting ready for Rob to leave on Saturday for Haiti. He'll be gone for 10 days and will spend his time doing medical training for local medical staff. I am excited for him to go, but of course there is the specter of extended solo parenting. He'll be gone for both Grace's actual birthday and her birthday party next Friday, as well as Valentine's Day, so you can see how I'm really suffering for the gospel here.

There is a city in Haiti called Gonaives, and there is a slum in a trash dump outside Gonaives called Jubilee. We have a friend (who we went to church with here in Salt Lake) who moved to Jubilee about a year ago. Her name is Grace and she is a nurse; in Salt Lake, she worked as a pediatric neurology nurse at the children's hospital and now she runs a primary care clinic in Jubilee. The clinic is part of a holistic effort in Jubilee to transform the community that includes a school for children, a trade school for adults, clean water, and so forth. Our church here is involved in a long-term relationship with Gonaives and Jubilee and this year a handful of people are going on this trip to do medical training and otherwise serve the people there in various ways, the local Haitians and the Americans who live there full-time. Grace and another nurse work at the clinic along with a handful of local nursing assistants; they are the ones who Rob and the other medical people from Salt Lake are going to be training. If you're interested in seeing what life is like is Jubilee, you can read Grace's blog; if you're interested in keeping up with the group Rob will be traveling with, they are going to update this blog while they are away.

Rob has gotten vaccines and sprayed his clothes with anti-mosquito stuff to fend off malaria while I have pondered how exactly I am going to take a shower while he is gone. (Ideas? I seriously cannot wait until Lewis will sit still and watch TV for 20 minutes while I get ready.) Rob has put together training on the immune system and pediatric development and so forth while I have pondered catching up on Downton Abbey while he is away. Rob is packing shorts and T-shirts and it will more than likely snow while he is gone. He will eat Haitian spaghetti and I will make vast quantities of macaroni & cheese for the kids. He is going and we are sending.