25 Weeks: A day in the life of juggling too much stuff

I keep waiting for the hammer to drop. For something major to go wrong because it seems it has every other week. But… is it possible we might be in for some slightly less stress? At least for at least a bit?

Especially with a lot of stuff we want to accomplish on her behalf, we could really use it.

Here’s this week’s update about not feeling like a caged bird, a few of the many dilemmas we go through every day where there is no playbook (that I know of), and what a day in the life of caring for Eloise looks like.

We might really be on to something with this food

I feel a bit afraid to write it out in case it somehow jinxes it, but we added decaf coffee & sugar, margarine, and red lentils with no noticeable changes. And only removed all-natural potato chips. This is steps forward. I hope.

Eloise still had a few “flare episodes,” her eating average has stayed steady for 3 weeks (still 15% lower than it should), and she’s still spitting up (some days more than others). Yet, overall, her pain seems a lot less. On Saturday she was downright giddy, even. We were like, “Who is this kid who is just happy all day?”

We’re still not at “baseline,” (where her symptoms are all gone and her poops are the right everything) but at the moment I think I have to give that up. Her cradle cap, which apparently is a sign of a yeast/candida overgrowth, has been flaking off some by itself. And she is pooing a lot less. She’s even had a few slightly less runny poos. So… maybe we are at least headed in a better direction?

I have a food or two I might try to add over the next week (chickpeas and cashews are on the list), and then it’s time to get my butt in gear and start Eloise on solids.

Because this gained the same amount of weight in one week that, a month ago, she gained in 1.5 days. So if before we weren’t sure we needed the extra calories that solids bring, then we’re sure now.

Starting solids is a big thing

This is one of many areas that I feel like I’m in way over my head and there’s no playbook. At least that I know of. (If you somehow know of a resource of the right time and way to start kids on solids who are globally delayed and have extreme food sensitivities, let me know.)

• The WHO says to wait and start solids at 6 months
• All kinds of resources say wait to start solids until baby has good neck control (hers is alright), sits up on their own (nope), shows interest in your food (yep), opens their mouth for food (yep), and has lost their tongue thrust reflex (nope)
• Allergy moms in the total elimination group say wait until you at least get to baseline, and then also the above signs of readiness. The Baby Reflux Lady says the same thing.
• The Estonian healthcare system as well as her nutritionist recommend starting solids at 17 weeks
• And there’s been studies that show that anywhere from 4-6 months is a fine time to start babies on solid foods

But, really, one of the main reasons to start solids is to avoid bad food allergies for life. I can tell you that sounds like a great idea to me. Too bad she’s already got a bunch. Not to mention, she doesn’t have — and may not have for a very long while — some of the “signs of readiness.”

Should we wait until she sits up on her own without support? I don’t think we can, because if the literature is right on her deletion, that could be the age of 2 or never if she ends up with severe epilepsy and regresses.

Should we wait until her tongue thrust reflex has gone away? I mean, that sounds like sound wisdom. Maybe. But will that stick around for a super long time, too? Heck if I know. So can we afford to wait? Probably not.

Is it a good idea to wait until she gets to “baseline” to begin solids? Probably. But is baseline just around the corner or will it take months? Sigh. Probably months. If maybe never. So should you just go ahead and start solids or will it make her food intolerances worse? Shoot, it might make it worse. But maybe it will make it better? I have no idea. I don’t think we can wait.

A kind friend sent me resources on starting the solids process with gut-healing foods. Which sounds like a really brilliant plan. Until I began reading through which foods to start her on. Nearly every one were foods she’s already likely reacted to — like the three starters of egg yolk, avocado, and sweet potato. Also, nearly all of the gut-healing foods are quite high in one of the food chemicals we are avoiding in the current diet. Sigh.

I feel like we’re flying a bit blind on this one.

It’s not like there are a ton of moms who were in the same situation that I can ask how they did it and what worked. Even the allergy moms are normally dealing with kids who have inherited their own poor gut health and, honestly, I doubt that’s the case for Eloise. So this is yet another area in which we just have to pick a path and pray it’s the right one.

This coming week she will be exactly 6 months. So it’s almost definitely time to start.

As I write, my thought is to try her on stuff I’m already eating. Brussel sprouts has my vote because it’s full of a lot of good vitamins. Or maybe lamb because meats are more healing? Or green beans because it’s less likely to cause gas than the brussel sprouts?

Gosh, I don’t know. Potatoes, celery, swede, cabbage and red lentils are my other options. Or I can try — man I’m a bit afraid — her on grains that are supposed to be “safe” on this diet. The pro is that introducing them early helps avoid food allergies, the con is that in the allergy mom’s group a vast majority of babies react really poorly to all grains. I have pure, organic baby cereal versions of rice, millet, and oats waiting, just inc ase.

Man, y’all. I have no idea what we’ll do. But we’ll pick something.

Not feeling like a caged bird at the moment

This was Brian’s second week on vacation and it was especially good for my soul. Eloise let him feed her for the most of 3 full days, which meant I could — gasp — do whatever I wanted.

Okay, not quite whatever I wanted. I used up most of that time cooking meals for myself, cleaning, doing dishes, washing pump parts, and cooking for Brian, but it was still nice.

In fact, it was good for both of us. Brian got to experience what my days normally look like — intense, nonstop focus on Eloise with few to no breaks just trying to get her to eat close to enough. And I got to experience what his days normally look like — lots of cleaning pump parts, house chores, and making meals for both him and myself.

I finished up some blogs, started a few other posts, began another painting, did some research for Eloise, and, when I had a headache, I even took a nap on my own without a baby on me for maybe the first time since she was born.

Eloise updates

Gosh her squeals of delight just literally fill my heart with so. much. gladness. Over and over and over again her noises and sounds and yells of happiness just make Brian stop in our tracks and smile. She is a delight.

I cannot even begin to count the amount of times we burst with joy every single day as she babbles. It makes all the hard stuff totally worth it.

She also seems to be left-handed. She started exploring a new skill with that left hand of hers.

Her smiles and giggles and sounds are also increasing. ❤️

Even being away from her this week — well, a few meters away — I found I missed her so much. So even in the midst of my “time off” I’d have to go over and steal her away from Brian for a moment.

She makes my heart melt.

Juggling a lot

I’ve seen this TikTok video passed around in a number of my circles lately.

@re_cooper_ator

Do you know what it takes to care for a disabled child🧐#disabilityawareness #thisisafm #medicalmom #medicallycomplex #healthcarehumor #caregiver

♬ original sound – Lexie

Thankfully, we don’t have half of those duties, but you get the picture. Being a special needs parent is really a lot of work.

Even just mentally it’s a lot to process right now. I have so many questions that I need to find answers to. And it’s not easy.

• Physiotherapy What exercises are the most effective for her rolling? Do I completely ignore her sitting and only focus on tummy time and rolling or do I do a bit of both? Is there a way to incorporate some of these things into her feedings and make it “fun” for her? If I leave her in a position where she gets fussy, will she come to hate that position or do I just push through because it’s good for her? Do I try to do different versions of tummy time every time we do physiotherapy or just one and rotate?
• My diet I can only trial one new element every 3-4 days, and I have been on some sort of elimination diet for 4 months now, and off supplements for over a month, so am I deficient in some sort of vitamin? Is it more important to add in more foods for a varied gut or more important to add in supplements that I might be deficient in like Omega IIIs or Calcium? Is there maybe enough calcium in the red lentils that I can not worry about that for a bit? Should I add in another protein source, like chickpeas, to take some of the load off of expensive lamb and give myself some variety? Or should I start trying out gut-healing supplements? Will gut-healing supplements help her more than variety? If so, what should I begin trying first? Aloe ferex? Grapefruit seed extract? Slippery Elm? Collagen peptides? Digestive enzymes?
• Sign language Will Eloise, with her clenched fists and low skills in that area, even be able to imitate baby sign language? If she still isn’t really making eye contact, does that mean she wouldn’t also notice signs? Should we start trying to sign anyway? There are so many signs, which ones should we start with? When should we start? Is there any way to know if other families with kids like her have tried baby signs and it worked or didn’t work? Should I ask in the group, where questions often go unanswered, or start trying to find parents individually and ask them? Is this even worth our time with everything else on our plate?
• Estonian How much will her comprehension be of English alone? Does she even understand anything right now? Normally they say a parent should only speak one language to their kid so they don’t confuse them, so will it cause even more problems if I pick a day or time of day to always speak to Eloise in Estonian? Will this prepare her at all for preschool/kindergarten or will it just delay her language skills even further? Should I read her books in Estonian and translate to English directly after so she hears both languages or just pick one language and stick to it for a period of time? Should we even worry about this at all and just pray and hope she picks up some understanding when she eventually goes to school?
• Elimination communication What do I need to do to start? What supplies do we need? They say it’s better to start before 5 months, but it seems that might be around the fact that babies start becoming mobile at 5 months, so are we still “early” because she won’t be mobile for awhile? She doesn’t seem to respond to our signals like white noise, so will she even ever respond to “potty signals” even after months and months of consistency? Is it possible to do elimination communication with an intellectually delayed baby? Does anyone have any experience with doing this with a mentally disabled kid? Is trying to do it now actually just adding more stress to our life than we already need?
• Solids The nutritionist said to start at 4 months, but she’ll be 6 months this week — have we waited too late and possibly have made her food allergies worse? If we give her solids will that help with her reflux and intolerances or make it worse? Should we prioritize giving her gut-healing foods first that she might react to? Or prioritize giving her foods that seem safe? Or prioritize potential allergens like grains that we can at least use to thicken her milk and get more calories in her?

So many questions. And, for many of them, I don’t think there are clear answers.

And part of the problem is that the decision-making is pretty much just on me. I don’t have someone to consult with that specializes in these areas that can tell us with confidence what the right path is. (If you know one who deals a lot with kids with severe disabilities and allergies like Eloise, feel free to hook me up!)

It’s a lot to mentally juggle.

And that’s on top of her daily schedule. Which Brian said on Saturday (and I quote) “is relentless.”

Eloise’s daily schedule

Every day begins one of two ways.

Sleep-deprived, but cautiously hopeful. Because Eloise woke up 2-3 times during the night, ate 80-100 ml, and stayed up 1.5-2 hours in total. Which means we may get her to eat over 600ml today if everything else goes okay (which it normally doesn’t).

Better rested, but dreading the consequences. Because Eloise only woke up 1-2 times during the night, ate 20-40 ml, and stayed up 15-30 minutes total. Which means she will definitely not even come close to eating 700ml today.

These last 3 weeks she’s been averaging 600ml per day. She needs over 700 to gain weight well. Which probably explains why she’s no longer gaining much, if any, weight.

So, the entire day, it takes all your mental energy to focus on figuring out how to get enough food in her. It’s mentally exhausting, and it leaves almost no time for thinking through (let alone researching) the quite important questions I mentioned before.

And, because she naps in such short increments, it’s like you never have a break. Especially if in those times you need to do things like wash pump parts or cook food or call places or research resources or connect with people.

It’s like your entire being is focused on making sure this little human gets enough milk in her to survive. As strange as it sounds, it is really mentally exhausting. She never has any real down time, so at this point I don’t even take her on walks. Because taking her on walks is taking time away from her eating. And time away from her eating means she eats less. And eating less means she struggles even more to gain weight.

But as long as I’ve had some time to rest and recharge myself (which I did this week, for example), then I’m normally okay if she has a bad pain episode because I’m dealing with something tough, but from a full cup. But if she has more pain episodes or I haven’t had time to recharge, then I empty really fast and fall into mental breakdown far more quickly than I would like.

This is basically what Eloise’s day looks like in 2.5 hour chunks.

• 25-33 MINUTES Nap She sleeps for exactly 33 minutes, or, if I’m unlucky, 25 minutes. After staying next to her for 5 minutes to make sure she’s actually asleep, I turn on the monitor and then try to cram as many chores or research or writing into that short time window as I can.
• 20-30 MINUTES Physiotherapy I do her tummy time lying on me, then tornado roll her a bunch on the floor to practice back to front and front to back rolling, do a little more tummy time flat on the floor, maybe throw in a towel and do raised tummy time, possibly put her on her bouncy ball for back time or tummy time, and then leave her on the floor a little with toys and to roll on her own.
• 05-10 MINUTES Diaper change Take a photo and document her poop in 2 apps so I can see over time if it’s actually improving or not. Steal some of this time, where she’s just really happy on her back looking at the space mobile above her, to maybe wash a few pump parts or finish up something I started during her nap.
• 60-90 MINUTES Feeding Log all foods she’s eaten that are present in this milk from the last 24 hours into one app. Log the amount and bottles in another app. Spend literally the entire time trying to coax and play and soothe her into eating around 100 ml. (See the Feeding Difficulties Dance for more) Give up trying to feed her around 10 minutes before her 2 hour wake window is up and go take her for a nap.

When she eats, if she is content to eat via syringe, I have to be mostly mentally present. But I may be able to do a little research on my phone if she’s doing okay. But, if she gets fussy, then I’ll have to switch to spoon feeding her — which takes not only immense concentration (trying to catch all the drops she spits out of her mouth on accident), but definitely takes up both of my hands. Which means any research on my phone while she eats is out of the question.

Sometimes I scold myself, “Mallory, everyone says babies are hard work. So you shouldn’t be surprised. Every parent of an infant is tired and struggling.”

But then I go, “But wait, typical babies don’t…

• need you for an entire 1.5 hour feeding
• need you to have specialized menus you have to sort out yourself and make from scratch while your husband also has to cook his own foods
• need you to do physiotherapy with them after every nap
• need you to keep track of and schedule doctors and therapy visits every week
• need you to do research for their condition during your “downtime“
• need you to plan to feed them yourselves for the next few years
• need you to learn and implement elimination communication if you want to have hope of them being potty trained
• need you to exclusively pump and build up a stag of milk for them, especially in case you cannot handle foods or formulas at all and need breast milk as your only food for over a year (this is a real thing with some high allergies babies)
• need you to really plan and pay attention to what solids you will feed them and when
• need you to figure out how to introduce them to a language because otherwise they might really not be able to handle pre-school (kindergarten)
• need you to learn and then introduce them to baby sign language early because this may be the only way they ever communicate, if they communicate at all

I try to give myself a little grace when I remember all that.

So the fact that Brian was able to take a majority of some of the day feeding cycles from me for a few days this week was just astoundingly good for my mental health.

Speaking of mental health…

Brian and I did a lot of soul-searching and talking over his 2 weeks off from work. What’s sustainable. What’s not. What we can change around in our lives to make things better for Eloise, for me, for Brian, for us.

And we decided on some pretty big changes. We have a few more people to talk to before we can talk about it publicly but we’ll let you know sometime in the next few days.

So be on the lookout for the blog.