Week 13: She is in so much less pain

The original post in late April of 2021 in her facebook group.

In general, she’s feeling so much better.

I’m still shocked how much less pain she’s in (I’m guessing a combo of this elimination diet paired with “nursing”). Most feedings she still has maybe 5 minutes of crying and pain from reflux or gases, but that is waaaaaaay less than it used to be.

At the moment my biggest worries are kinda normal parent stuff.

Her weight gain. (Or slowing thereof.)

Before we even started nursing, her weight gain had already slowed down. It’s supposed to be 20-30g a day, but it’s been more like 10-15g for awhile.

We weighed her yesterday and, indeed, 10g a day for this week.

I talked to another mum who has a 17-year-old of her same deletion who eats orally (most of the kids have some sort of feeding tube). Like Eloise, he has a bunch of intolerances still. Cow’s milk, gluten, egg, soy, and probably more. I asked about his weight gain when he was Eloise’s age. (He was actually born at a normal size so I thought maybe he grew normally, too.) She said he drank enough breastmilk to feed twins and then would chase each feeding with a bottle of formula. And still didn’t really gain weight well. By the time he was 5, he was eating enough to feed an adult, and still not gaining. She said the kids of Eloise’s deletion just seem to have immature GI systems. And, likely, her boy’s issues are and were due in part to “leaky gut.”

A lightbulb went off. Maybe that’s, at least in part, what’s going on.

This little milk guzzler literally eats for 1-1.5 hours at each feeding session, takes a quick 33 minute nap, and then wakes up and does it all over again. But yet is gaining 10g a day. I know, at least before she started nursing, that I was producing 30-40% more than what she was eating. So it shouldn’t be a supply issue. Then maybe it would be a transfer issue, but with her super long feeding sessions I assume eventually she’d get a lot of it.

But, then again, she’s had slow weight gain since before nursing, too.

Leaky gut learning mission

So now I’m on a mission to learn about “leaky gut” and see what, if anything, I can do to help her. There’s so many things in this chromosome deletion that will be beyond our control. But maybe this is something I can help, at least in part.

Apparently one of the things I’ll need to do is speak with a nutritional therapist. I’d like to find one in Tallinn if possible, because the road seems it will likely involve lab testing and supplements. I have no idea where to begin or what to search.

Because apparently the reflux just really does some damage to their little insides, so the mum I spoke with said that by avoiding his food triggers, they’ve been able to heal quite a bit of it.

I just want to pause and say I’m so thankful for all of your suggestions about food triggers already. Many parents who go on this road don’t realize the food issues until much later. So I’m glad we caught it early.

Because, in early March we had a little girl who screamed inconsolably most of the day. Now, at least at the moment, we have a mostly content little one who eats a ton and falls asleep fairly okay. (Although she’s quickly developed a preference of falling asleep while eating. That was quick!) Yes, there are still bouts of reflux at every feeding, more spitup and snotty blowouts than ever before, and gas that seems to not go away. But she’s still way happier than before.

I’m also wondering if the elimination diet is doing something positive (or negative) to my own gut health. Despite me trying to eat a ton every day, I’ve lost 4 kilos (around 9 lbs) in the last few weeks. Normally, my body routinely holds on to fat and refuses to lose it no matter what my diet or exercise routine looks like, so this is not normal behavior for me. Maybe it’s a good sign? I’m now back to University weight, even lower than I was pre-pregnancy.

Pumping / Supply worries

My other worry is just milk supply. My supply was supposed to regulate by 12 weeks. I worked so hard to keep pumping a lot and build up my supply so I could feed her no matter what. Then her “nursing” started at 10.5 weeks, before I had regulated.

I tried to fit in as many pumping sessions as I could once it started. I went from 8 to 6 to 7 and back to 8. I was spending maybe 20 minutes less a day pumping than before her nursing, but I was making it mostly happen.

But then my left side, the one that’s always produced more, stopped really responding to pumping. Or maybe the pump was struggling. (I mean, I do use them a lot.) I don’t know. And then I discovered it doesn’t really respond to Eloise, either. It takes her approximately 10-15 minutes to get the left side to trigger milk at this point. The only exception is if I start her on the right then switch her to the left, then it’s often okay. The right side is triggered immediately.

And now, when I pump after she eats (which is also right before she eats, go figure!) I can sometimes get almost no output from the left. And a lot less from the right. It’s hard to know if it’s because my body is re-adjusting to her as its trigger so it isn’t responding to pumping as well, if she’s just eating a ton so I’m outputting less, or if my supply has rapidly dropped.

I feel worried. I want to be able to feed her.

I’ve looked into renting a good scale to do weighted feedings, but it seems the quality of the ones we can rent is about the same as the one we’re currently borrowing. Not sensitive enough to trust the numbers for weighted feedings. Sigh.

I’ve spent time trying to ask on forums and others how much and how often I should pump now. I’m worried my supply has suddenly regulated (we hit 12 weeks last Friday and I’m leaking a lot less) at a much lower output. But this little kid wants to eat eat eat.

I’ve been watching this afternoon and she’s mostly been on hindmilk, so that means she’s transferring enough milk to be on the fatty stuff at the end. I guess that’s good? It’s just so hard to know.

Getting in her physiotherapy exercises

Okay so this isn’t so much a normal parent thing. But there are all kinds of exercises we are supposed to do with her to strengthen her muscles becuase sitting and crawling are not going to come so naturally to her.

The problem, again, is the eating. She eats for 1-1.5 hours. Falls asleep for 30 minutes (at which time we can’t do activities anyway because of her reflux because then she just spits it up). Then wakes up ravenously hungry. At that point we have up to 7 minutes of calm, smiling baby. So we need to choose. Do we… play with her? Change her diaper/clothes? Do her PT exercises?

If we do 2 of the 3, she starts getting so hangry she struggles to calm down from her crying.

Sigh.

It’s just hard to know what is best for her.

Seizures

There’s also the good news that what I thought was choking or possibly seizures, I can now see, now that she’s nursing, that it’s actually just an acid reflux attack. That really has calmed this mama’s heart.

But if she has part of her SCN1A sodium channel affected (the geneticist couldn’t be sure), then seizures may begin in the next few months. And, if they do begin, then likely this little one may start to regress pretty quickly.

That’s heavy.

So keep those good thoughts and prayers going (as well as sending us the resources you have come across!). I think they’re making a difference. Compared to many of the kids in her deletion, she really is thriving in these early months.