28 Weeks: It’s a miracle

One major reason I write — and include way too many details — is to crowdsource help. We need a village, which means you!

Whether you’re young or old, whether you’ve got a special needs kid or not, whether you’ve ever birthed a kid and raised one or not, you can help us.

How can you help?

I write about our journey today because I’m hoping that, for some of you, you read what’s happening and something clicks in your brain.

Maybe you notice something we don’t. Maybe you know a specialist that deals in stuff like this. Maybe what we’re going through sounds familiar to someone’s situation you know and it got better. Maybe you’ve never had a kid but have a crazy hypothesis that somehow makes sense in your head that we hadn’t considered. Maybe you follow an insta account that you love that’s around the topic of something we’re dealing with. Any of that could be a stepping stone that helps us.

So let me make this clear:

I do want your advice, no matter how silly or obvious you think it seems.

We only have one requirement — that you only give a suggestion if you’re also okay if we end up not taking it. Cause some things will work for us, some won’t, and some things will be right for us later but not now.

Truly I do want your ideas, because I would guess more than half the reason we’ve made such progress is because of all of the advice people like you have given us on our journey so far.

I cannot thank you enough.

All right. Enough sappiness. Let’s dive in.

Leaps ahead

This week has been soooo good in so many ways. Like, huge steps forward oh-my-gosh-this-might be-a-game-changer-maybe-this-is-a-miracle-but-I-don’t-want-to-get-ahead-of-myself good.

Eating

It was way way way better (still not perfect, but we’ll take it!)

If you could see my right now, I’m doing a happy dance. If you’ve been following along, you know way too much about our feeding difficulties.

Last Monday right after I wrote the post, I put a regular old Medela slow-flow bottle nipple on the end of a syringe (that’s what they used in the NICU hospital), put my finger next to it, put it in her mouth, and then took my finger out. AND SHE TOOK IT!

Every other time when we’d try a bottle, she’d gum the bottle nipple confusedly, then spit it out. It just was not for her. But, somehow, maybe because it was on something familiar like the syringe, she was open.

And, not only did she take the bottle nipple, but she continued to take it all week. Which have brought some major major benefits to her feedings.

Eating for her is now:

1. Faster (she’s eating around 70-100 in around 45 minutes easily, whereas before it was more like 50-60 in over an hour)
2. Easier (she barely needs any coaxing to eat, and the milk just flows now)
3. Far more productive (she’s averaging 650 ml per day over the last 5 days whereas last week it was more like 520!)

So what’s the difference?

There was a hypothesis we hadn’t thought of — she was tired from sucking.

I mean, it makes sense, right? I have lamb at my 4 meals a day these days, and because we boil it and freeze it, it’s always chewy and hard to eat. I definitely get tired of chewing by the end and want to give up. She was the same!

Months back, when she took a bottle, she would cough and sputter a lot and get reflux. Then, when we tried giving her a bottle again after my bout with nursing ended, she normally outright refused as soon as she had felt the texture in her mouth. But, on the occasion that she actually gave it a suck, she’d then immediately spit out all the milk. I’m guessing, for her, the flow was probably too fast.

But, with the syringe, she could control the flow like she would if she was nursing. The problem was, with just the syringe and our finger, she had to work pretty hard to get that tiny amount of milk. One suck = a teeny tiny amount of milk.

Now, with the bottle nipple on the end of the syringe, with the same amount of effort, she’s getting way more milk. One suck = a good amount of milk that she can handle. Which has meant that she ends up eating a lot more by the end of the day. Win!

Looking back, I’m guessing the reason she ate so much faster at the beginning of her feedings when it was just the syringe and our finger is because she had more energy to suck harder. After the first few syringes, though, she’d lose steam because she was tired. And even if we gave her 30-60 minute breaks, she was still too tired to eat much more. Wow. Why did we not think of that?

Why not use a normal bottle now that she’ll take a bottle teat?

I was so excited she was taking a bottle nipple that I went back and started trying all our old friends.

• Spoon feeding – She loves, it’s just inefficient because with her tongue thrust reflex, she often pushes a lot of it out of her mouth
• Cup feeding – She wiggles too much and the liquid often gets everywhere
• Aveeno bottle – She doesn’t like the texture
• Medela slow-flow nipple on bottle – Too fast (she started choking pretty quickly)
• Medela slow-flow nipple on syringe – She loves (although she destroyed our only nipple within 24 hours, so we had to quickly order a set of 4 and try a few other methods while we waited 48 hours for our package to arrive)
• Medela special feeder – The fast setting is too fast for her, the medium setting she likes but it takes her a very very very long time to eat for some reason
• Dr. Brown’s nipple size 2 – Too fast
• Medela Calma – It makes her work too hard. Plus, the mechanics somehow make it so that the last 20 ml are often impossible for her to suck out.
• Syringe & our finger – She loves, but I think partially it’s because she is soothed by sucking our fingers. She’s never taken a pacifier, but often likes taking one of our fingers or her own.
• Medela Calmita – Same problems as the Calma, that the last 20ml are impossible for her to suck out.
• Haakaa nipple shield – She loved it, and we used it for 1.5 months of nursing, just on one side. But it still made her work way too hard. I definitely produce more than enough milk to feed her, but that’s only if she eats from both sides. Though she was still gaining, she wasn’t gaining enough weight while nursing. I was sad to let nursing go, but her health is more important.
• SNS system – (Not pictured) It was, honestly, too much for me to juggle between having a haakaa on the left I needed to make sure she didn’t kick off, having a nipple shield on the right I needed to make sure she didn’t rip it off, and then on top of that having an SNS system with tubes that I also needed to make sure she didn’t take down, too. I didn’t have enough hands.

So, at least for now, we’ve settled on the winner as the syringe with the bottle teat. Let’s see.

No reflux flare episodes

You read that right — not a single painful reflux flare episode (those things where she cries and screams from pain for generally 30+ minutes) this week.

Sure, she did have a few meltdowns, but they were super short (less than 5 minutes) and seemed to be related to being tired. Or overstimulated. But what baby doesn’t have these?

Maybe the freshly frozen lamb I’d worked out with the farmers that had less natural food chemicals helped. Maybe the grapefruit seed extract and aloe ferox for gut healing and candida overgrowth fighting helped. Maybe it took that long for food chemicals to get out of her system so my diet finally helped. Maybe it was that new German probiotic with the fancy gut bacteria strains that are good for infant digestion and that helped. Maybe it’s just that her little body is maturing and that helped.

Whatever it is, I am soo grateful.

We might be at baseline

If you’ve been following my total elimination diet journey, you know we’ve been on a quest to get to baseline. Baseline is that elusive place where her poops are mucus-free in the consistency of peanut butter. (And, also, if food allergies were the sole cause of her reflux, then baseline would also mean she’d be pain-free.) It’s a quest we’ve been on for so long that I literally gave up the idea of it.

But, folks, I think we made it! I had given up hope but, wow — she might actually be at baseline. For the first time since she was born, we might actually be at a place where her little gut is getting to rest and heal.

This. Is. Huge.

Not only because she can heal, but because that will help us be able to tell the difference between a reaction and a “normal, fussy, painful day.” So we can know better what foods are hurting her or not. Yay!

Way less fussy this week

Our happy, chatty girl came back this week, just as the wonder weeks app said she would, weirdly. No more random fussiness. It’s been a joy. (And definitely no teeth, so it probably was her leap 5.)

She’s grabbing for the bottle

Something else she picked up this week is an insistence (not all the time) on helping to hold her “bottle.” Considering this kid doesn’t grab for anything, it’s been really encouraging that she can get somewhere with her fine motor skills.

We are trying to start some good habits

A walk in the neighborhood

Three times this week, Brian and I attempted to take a stroller walk around a small area of our neighborhood with her. It’s been super hard mentally to allow ourselves the ability to get out of the house and into nature (which is something I love) because she just needs to be eating all the time. But with two of us, one can feed her while the other pushes the stroller.

Sure, it’s not the normal thing to have to feed your baby on their walk, but it’s the only way I know to make it work right now. And it helps us get at least a tiny bit of exercise.

I can’t say it’s been the most successful, but we’re trying. And maybe we’ll get the hang of it.

Our markerboard

Okay, maybe this isn’t a good habit so much as just something that helps us, but it at least gives me a good hit of dopamine every time I write something on our markerboard and then get to cross it off later.

It’s been such a lifesaver already as Brian and I have been struggling to keep track of all of the things we need to do. (Like buy digestive enzymes for me and her.)

Estonian

I started lessons this past week for Estonian, my first ones in years! I passed the state B1 exam easily last winter (it’s a requirement if someone wants to become a citizen eventually, it just means you have intermediate language skills), but I want to really be able to speak fluently. So Monica and I worked on an obvious topic — vocabulary to speak with Eloise’s doctors.

Some highlights:

• erivajadustega laste vanemad = special needs parents
• eriala = specialist
• neelama = to swallow
• imema, imeda = to suck
• lutt, luti, lutti = bottle nipple / pacifier
• gastrostoom = feeding tube
• Tal on kõrge suulagi = She has a high palate
• toitmisvahendid = feeding equipment

Brian is also going to start trying to get in some Estonian study this week. He thinks he can do self-study without a teacher during the evenings while I watch Eloise. I definitely can’t, I need a teacher or a classroom to get anywhere. Let’s see how this goes.

Sprint Planning

In the startup world, there’s something called sprint planning where you get together with your team and make a plan for the next week or two — prioritizing what’s most important. Brian and I did our first sprint planning last night, figuring out what each of us was going to try to get done this week. It felt good!

Therapy

Finally. Finally. Finally I will get to meet with a therapist today. In person.

She’s the first therapist I reached out to that actually (1) responded and (2) was able to set up a time.

Ironically, at the moment, I feel like the “me” I was pre-Eloise (aka, emotionally stable), but so many special needs moms and good friends sing the praises of regular therapy, I’m going anyway.

A few steps back

Not all was roses, but in light of some of the great things that happened this last week, it doesn’t seem all that bad.

Oh Physiotherapy (PT)

Let me tell the story of PT this week in videos first.

By now I think we’ve traumatized our physiotherapist because Eloise has screamed the last 5 or 6 sessions. You can see the fear in her eyes when we enter the room. Poor gal.

It’s hard to know what to do in these cases. We need the physiotherapist’s expertise and advice, but, clearly, something isn’t working for Eloise right now.

Our next idea, while our regular physiotherapist is on vacation for the next 2 weeks, is to call the private physiotherapists that make house calls and try a few weeks of that and see if that helps. (Another thing added to our markerboard to-do list.)

I found a food allergy of my own

I mentioned last week I was getting brave and trying a nut — cashews.

The first day I ate 7 in the middle of the day.

The second day, I ate 9 of them as a snack when I was starving in the middle of the night. Afterwards, I noticed a warmth on the roof of my mouth and dismissed it as coincidence or imagination.

The third day, I ate 11 of them in the middle of the night again and then became absolutely positive I was noticing a warmth and stinging feeling in my mouth. Only, it stayed around the entire day.

I’m allergic to cashews.

So weird. Cross that food off the list.

If I understand gut stuff correctly (which I probably don’t), it’s possible that as I slowly add more food to my diet and my own gut heals, then maybe I can try cashews again in the future and find I’m no longer allergic to them. At least, I sure hope so, because I’ve always loved cashews.

Realizing her scratching might be a long-term problem

Being a part of a few more larger groups with parents that have kids that have chromosome deletions, I’ve seen a theme of elementary school aged kids hurting themselves somehow as a part of some sort of coping mechanism. Stuff like banging their heads against their headboard or picking at their skin.

Eloise, since birth I think, has swatted and scratched at her face. The level of intensity has gone up and down. At first I thought it was a newborn thing (after all, they do give you scratch mittens). Then I thought it was only related to actual food allergies. But now it looks like she does it when she’s frustrated or tired, too.

It feels a little sobering to realize she might not grow out of this habit, so we’ll need to keep an eye on it long term and maybe come up with some strategies.

No more long naps

Well, I had been hoping she’d magically start consolidating her naps and get more time in sleeping after she took a long nap two days in a row a few weeks ago but, nope. We’re still at 4 naps a day, 26-33 minutes each.

Delays becoming more apparent

Most of the time these days I feel peace and acceptance. Eloise is who she is, she’s missing the DNA that she’s missing, and all we can do is our best. I have accepted, I am accepting, and I will accept it.

But it’s starting to become more noticeable that she’s behind. And, occasionally, I feel a twang of jealousy.

She stares at our faces, but still doesn’t make deliberate eye contact. She ignores toys completely. She’s never noticed her reflection in a mirror. She can’t use her fingers to really grasp and hold things with any sort of skill. And her gross motor skills development seem to have come to a halt (she’s at the same place in rolling, head strength, and sitting as she was 2 months ago).

I see another baby her age beginning to crawl. Or sitting without support. Or eating with their fingers. Or playing with toys. Or babbling clear sounds. Or just notice they look huge. And then I hear a tiny voice inside me insisting that if we were just better, more attentive, more caring parents, that Eloise would have those same skills. The voice says her delays, or even her missing genes, are my fault alone. That our child would be normal if I just worked harder.

Thankfully, I’m normally able to push away those thoughts as quickly as they come.

And I know, I really do know, that her delays are not my fault. But it doesn’t stop those thoughts from coming at times.

Earlier this week I was sitting on the couch, staring into her adorable little face, thinking about how tired I was. Then the thought came, “Don’t worry! This phase isn’t for forever. Parents are always tired during the baby phase, eventually she’ll be independent and hanging out with kids her age in the neighborhood and you’ll get time back before you know it.” Then I realized that logic may never apply to Eloise and I found myself bursting into sobs.

When I signed up for parenthood, I thought it meant 24/7 caregiving for a short period of her life. I didn’t sign up for a child totally dependent on us for the rest of her life.

My grief surprised both Brian and I.

But I guess that’s how grief is. It comes in waves.

If we’re lucky, Eloise will gain some independence to do stuff like hang out in the backyard by herself or entertain herself with puzzles or toys or maybe even ride a tricycle around the neighborhood. We don’t know. But, still, the independence I’d expected as a pregnant Mallory last year will never come in the form I’d imagined.

I’ll be okay. We’ll be okay. But perhaps moments of sadness will always be a part of our life to some extent.

It’s incredible how deeply ingrained these Disney ideas are that “good things happen to good people and bad things happen to bad people.” So when something bad happens, we think we’re bad somehow — which just isn’t how the universe actually works. (I was listening to an incredible podcast on this very topic. If you like thinking through these things, listen to Malcom Gladwell’s podcast Revisionist History, the episode on Little Mermaid Part 2: The Fairytale Twist)

I have a lot of unlearning to do.

Our dishwasher broke and winged ants are back

Thankfully a friend had just given us money when our dishwasher broke this week. So that was perfect timing. Just 4 days of hand washing stuff.

And, so far, Brian’s proactive ant-killing powder has kept these winged insects miraculously out of the house. But it looks like we still have one big nest to fight. 😭

She almost completely refuses to eat from Brian now

Well, we had a good run where she ate from Brian, but we’re back to the refusal stage.

He tries to feed her at nearly every single feeding, but it’s getting worse and worse. She outright pushes away food when Brian tries to feed her. Or just takes the syringe or bottle from him and tries — unsuccessfully — to feed herself, which is adorable.

Before, I’d thought maybe eating was just harder with his fingers and the syringe, but even now with the bottle nipple it’s a hard “no” from her.

We’ve tried me in the room, me out of the room, me in the house, me not in the house, me next to Brian, me far from Brian, me talking, me not talking, we even draped my pjs over Brian’s chest that I’d just worn that last night.

Nothing.

Which makes it especially difficult now for me to get time away.

So, right now Brian gets her when she wakes up for her nap and does all her PT (physiotherapy) exercises. Then he’ll change her diaper and start trying to feed her. When she insists over and over again that she will not eat from him, I come in and feed her (at which point she normally happily starts eating immediately).

So I get 1-1.5 hours of Eloise duty, and then, if I’m lucky, 1 hour off. And that’s the cycle until the evening, where I just take all the feeding time so Brian can get some time to study Estonian.

Surely at some point she’s got to start eating from Brian again, right?

Otherwise, it’s hard to have hope that anyone will ever be able to babysit her. And, man, a date with Brian sounds nice right now. (Although it would sound even nicer if I could actually eat something — anything — at a restaurant at the moment.)

Keep hoping and praying with us.

Just some regular old updates

Overstimulation

I got a phonecall this week and she started screaming quickly — but when I got her into our dark, silent room and she calmed. We went to her PT appointment and she immediately went into hysterics — but once we got into the car, a familiar environment for her, she stopped crying. We had some people over we were talking to outside which sent her into a meltdown — but once I got her in the house, she was back to normal.

So she definitely has a problem with overstimulation and sensory issues, at least at this point.

I wonder how much is just that she isn’t exposed to much noise. After all, we never have a TV or music going on in our house — it’s mostly just silence other than us reading to her or Brian and I talking to one another. So I imagine the sound contrast between normal life at home and life with others in it can be deafening. We’ve definitely noticed that she hears very very very well because she jumps at even seemingly small sounds.

So, noise-cancelling baby headphones here we come. Gotta add that to the markerboard to-do list.

Elimination communication

One of the tasks Brian and I took on this past week was, finally, to look further into elimination communication. (Elimination communication, or EC, is basically watching super super carefully to find out an infant’s potty/poo cues, and then making sure they do their business only in a potty chair. While also teaching them pavlovian signals that potty train them before the age of 1.)

I put together the marketing emails I’d been receiving into a big doc (gosh I hated those) while Brian read them. And then did a little research.

Basically, urologists seem agree that elimination communication has some pretty big negative consequences down the road.

Early on, you’re teaching your child NOT to go. Which sounds fine. But that means they have not learned, first, that they SHOULD go. Which leads to urinary tract infections and constipation later down the road when the kid hasn’t realized they can go, but, instead, wants to keep playing, for example, so they never go.

When the reality is we have no idea how much she’ll be able to comprehend (i.e. explaining to her about her own bowel movements and how important it is she doesn’t hold them for forever), then this has to be a “no” from us on EC.

As much as I would have loved to have an adult whose diapers I don’t have to change, obviously if the cost is a continual run of bad urinary infections and constipation for life, that’s not worth it. I won’t make her pay that cost for my convenience.

But we will do something a little different, which should hopefully prep her for when we do start potty training her, but without messing up her system.

We’ll keep a potty next to her changing table and put her on it every time we change her — after all, she already has an association that her changing table is the time to do most of her pooping or peeing anyway. And we’ll use some sounds when she goes because it’s already done here anyway. And, if we somehow notice she’s giving cues that she needs to go, we’ll put her on her little pot.

And that’s it. That’s all we’ll do. Nothing intense or stressful or full of pressure. It’s just to start a rhythm and association she’ll get used to.

We won’t stress beyond that.

I feel some relief that we made a decision on that, even if it wasn’t the outcome I’d hoped for.

Starting solids again

We’d taken a bit of a pause on solids due to her constipation. But we started up again today with oats, since I tried oat milk this week and it wasn’t super clear whether it worked for her or not. Plus, that might give us some options of adding additional calories to her diet or other people feeding her while we were away.

We knew it was risky to go with a grain for a kid with food allergies. And, since 30 minutes later she was crying for about 5-10 minutes and didn’t actually take her nap, I’m guessing that might be a no on oatmeal. 😢 (FYI it was baby cereal oatmeal, 100% organic, gluten-free with no additives. So either she doesn’t do well with oatmeal, or 30ml of milk and the accompanying oatmeal was too much.)

Estonian friends, anyone have 62/68 girls clothes to give away?

Once upon a time, before I knew Eloise would be missing a whole lot of DNA, I happily accepted clothes from friends. Literally nearly all my friends who had kids in the last few years seemed to have boys, but that was fine. I didn’t care what my kid wore.

Then she was born and we entered the high risk child medical system and I started noticing that when we went to appointments and she wasn’t as well dressed, that the staff at the hospital seemed to not care about us as much. (Gosh I hope that was my imagination, but I’ve heard from enough special needs parents all around the world to know that it probably wasn’t.)

So I realized I would need to change my strategy from “Who cares what she looks like? She’s a baby!” to “What a well-dressed little girl who is extra cute!”

Which means we need a few long-sleeved dresses and girlish bodies, especially for when we see some sort of medical professional.

Up until this point we’ve been lucky to get some new, great hand-me-downs of little girl clothes. But Eloise was 60cm last week and she’s finally growing out of her size 56 PJs and clothes.

So if you know of anyone in Tallinn that is giving away (or selling very cheaply) a bunch of long-sleeved PJs (I don’t care what these look like) and long-sleeve dresses or lace and ruffle and floral bodies in size 62/68 (I’m trying to be picky), let us know.

My heart hurts that, as humans, when we see someone who isn’t dressed well, that we can easily dismiss them as not worth our time. I never expected to be caring about what my 6 month old baby wore to try to do what I could to get her the best care possible, but I can’t change society. All I can do is do what I can to help the world see that she’s fiercely loved and, thus, that she’s a baby worth caring about.

All our hugs and love from this especially hope-filled household this week,

Mallory, Eloise, and Brian