The “feeding difficulties” dance

The one piece of literature out there on Eloise’s 2q24.3 deletion mentions “feeding difficulties.”

I had no idea what that meant when I read that. And after a few months of talking to other parents, I now suspect it means something slightly different for each kid.

What does feeding difficulties mean?

The following are just a handful of what I’ve seen “feeding difficulties” mean in Eloise’s 2q24.3 deletion group, but I suspect there’s far more.

• Baby can’t latch (um, that’s like almost all the kids in her deletion)
• Baby has a cleft or high palate
• Baby is too sleepy to eat and needs tube-fed
• Baby has food allergies and often gets sick
• Baby has reflux and is in extreme pain
• Baby aspirates and/or chokes when eating

I’m hoping that, some day, feeding troubles will be far behind us. I mean, after all, the first few months of her life she was mostly just screaming from the pain of her food intolerances all day long, and we’ve come a long, long way since then.

But just so I can remember, and in case another 2q24.3 parent comes along in the future and wants to know, I wanted to spell out what “feeding difficulties” looks like for us today at 5 months.

Because, friends, her feeding consumes so much of my mental energy and time.

The current goals and parameters

Right now, at 5 months, she’s generally content to stay awake around 1.5 hours between her four or five 33 minute naps. (Although sometimes I’m lucky and she chooses to sleep for 40 minutes).

In order to get the calories she needs at this size, she needs to eat around 100ml (around 3.5 oz) or more at each daytime feeding. And that’s if I managed to get around 100ml in her during her 1-3 night feedings.

Ladies and gentlemen, this is not an easy daily task.

Our routine goes a bit like this.

1. [20-30 MIN] “Play” time and diaper change

Many people say you need a routine of sleep-eat-play, but unfortunately that doesn’t work for us.

Her reflux means she spits up really badly if she’s on her back or moves around too much right after she eats. So I have to do playtime when she wakes up, so then she sptis up a little less.

Plus, right after she wakes up she’s a pretty chatty, joy-filled baby, which makes rolling and tummy time exercises for physiotherapy way easier to do with a happy baby.

• Eloise wakes up from a nap by adorably cooing and making howling noises.
• I pick her up and give her lots of kisses (she loves those).
• Next, I put her down on a quilt on our living room floor and do some rolling exercises with her from one side to another.
• Then I roll her to her stomach, prop her up in front of a mirror, and leave her there on her tummy.
• She usually quickly rolls off or starts crying or fussing so I let her roll and stay on her side or her back.
• I leave her to play there for awhile until she gets fussy. (She seems to mostly still ignore toys, so it’s just her hanging out, rolling from side to side for awhile.)
• Sometimes, if the time was too short, I’ll put her in her swing — which she loves. She’ll then swing for awhile, talking loudly the entire time with her wolf howls and coos until she lets me know she’s done.
• Then I go change her diaper.

2. [10 MIN] The first 40 ml

After her diaper change, she usually cues pretty strongly that she’s mega hungry, so I settle on the couch to feed her.

• In the first 3 minutes she hungrily eats 20ml from the syringe and then yells at me with “eh eh eh” because I’m not filling up the next syringe fast enough.
• In the next 3-7 minutes she eats the next 20 ml quite quickly.

Ten minutes for 40 ml is a pretty good pace if we need to hit 100. But don’t let it fool you.

3. [60 MIN] The next 40ml (Also known as “the feeding difficulties dance“)

On a good day…

• She eats a little of the 3rd 20ml syringe then turns away.
• I burp her and then try to feed her again. Nope.
• I do some sit-ups with her and she loves it. I try to feed her again. She gets fussy.
• I read to her a few pages of a book and she’s happy. I try feeding her again and she takes a few militres before refusing again.
• I do some sit-ups with her and try feeding her. She takes a few mililitres and then turns away.
• I burp her then try to feed her again. Nope.
• I grab a book and read her a few more pages. She’s happy. I try to feed her and she drinks a few mililitres and then refuses.
• I put rattles or objects in her hand to see if she’ll explore them. Then I try to feed her again.
• I do “head, shoulders, knees and toes” song and actions with her. I try to feed her. Nope.
• I get up and walk around with her and she takes a few more mililitres then stops.
• I put her in her swing and try feeding her there. She takes a few more then starts fussing.
• I pick her up and walk again and feed her. She refuses.
• I take her outside and walk around and suddenly she’s happy to eat a little more.

If I’m lucky, that 20 militer dance takes me 15-20 minutes. If I’m unlucky, it’s more like 30-45 minutes just to get it all in her.

That means it takes 70 minutes for her to eat 80 ml and it’s already time for her nap because she’s rubbing her eyes and arching her back and starting to whine.

But we’re still 20ml short of that bare minimum goal and I’m starting to feel a bit like a mom failure because not only can I not get sufficient food in my kid in over twice the amount of time a neurotypical kid eats in, but I have accomplished absolutely no household tasks or chores.

4. [5-10 MIN] The last 10ml

Then we head to her bed in our cold, dark room with only a dim red bulb to light our way. I sing a lullaby as I zip her up in her zipadee zip and turn on the white noise machine.

Suddenly, as I put her down, she’ll make desperate signals that she wants to eat.

Then she might hungrily consume anywhere from 5-40ml in a matter of 5-10 minutes. I have absolutely no idea why.

So we do sometimes make it to her 100ml goal after all.

Why does it take so long to feed her?

Your guess may be just as good as mine.

Pain?

For awhile I thought it was just pain and discomfort which set in after the first 20-40 ml. But there are feedings where she seems mostly happy and chatty with very little pain and it still takes the same amount of time. Although when she is in pain and discomfort, which is often, it definitely doesn’t make things any faster.

Air?

Another theory I had was maybe, because of her letting in a lot of air with the syringe as I feed her, her stomach was quickly filling with air and so she didn’t have a lot of room left. So I tried burping her every 10-20 ml. But that didn’t help either.

Feedings too close together?

I thought, “Hmm… maybe she’s just eating too often so she isn’t hungry enough.” So I tried to extend her play times by putting her in the swing or hanging out with her outside. But she would quickly get angry and fussy and clearly show me she wanted to eat. So every 2.5 hours is her maximum time she’ll go between feeds.

Stomach too small to hold that much food?

I thought, “Hmm… maybe it’s just that she’s tiny and so her stomach is tiny and so she can only process 40-60ml of milk before she maxes out.” But then I remember there are rare times when she will eat more like 130ml. So that can’t be it, either.

Wrong tools for the job?

I would have thought maybe this was the case. I mean, after all, what 5-month-old baby is still being fed with a syringe and finger?

But she used to take bottles with no problem for her first few months of life and it was just as long to feed her. And she was exclusively nursing, albeit through a bottle-shaped nipple shield, for over a month and it was the same length of time.

So I’m stumped.

I’m working on acceptance

Regardless of the core issue of why it takes her so long to eat, I’m trying to trust and accept that there’s probably a pretty good reason. It’s just a mystery I may never be able to crack.

So I’m not sure what else to do at this point other than accept the fact that she just takes almost all of her awake time to eat. And hope that maybe, maybe someday it’ll magically get better.

I wrote to our family doctor last week to ask if there are feeding specialists in Tartu that might be able to help us. But until I hear back, I think this might be where we’re stuck.

We might be beyond the help of feeding specialists anyway.

Sigh. Oh well.

For now I’m just enjoying the fact that she’s in way less pain than she was a few weeks ago.

But if you happen to be a feeding specialist or know one and have an idea, I’m all ears.

EDIT: Thankfully, it looks like we’ve actually made some progress on this front. Check out our post on 28 weeks for more information. And stay tuned.

Hugs n’ stuff,

Mallory, Eloise, and Brian