GI Update: The Good, The Bad, and The Mommy

We left Dr. Liacouras several weeks ago with a mandate to stop feeding our son.  This is, at the same time, easier and more difficult than you might imagine.


Easier, because he's little.  He can't really sneak food, he can't beg us to let him have food, he gets what he's given.  End of story.  Except that it isn't.  He's not under my watchful eye all day.  We now have to worry about him being "accidentally fed" at school.  Don't laugh, I'm not joking.  I wish I were...  Aidan is prone to quietly scooting around on the floor, hoovering up other kids' leftovers.  And if we think it's hard now, it's only going to get worse when he transitions up to the next classroom.  Kids sit places and eat things at specified times.  Kids that aren't my kid.  My kid will sit - I don't know - in the corner by himself?  Licking walls?  Can't worry about that now. 

The good:
- Tom's insurance came through with 43 cans of Neocate.  (Because life is lifey, Aidan prefers Elecare.  Tough crackers, kid.  Tough foodless crackers.).  It only took two weeks of worrying and wondering where his next bottle would come from, but we won't have that particular worry for a couple of months.  This is especially amazing since most insurances won't cover any formula at all, even when there's a serious medical need.  UHC apparently recognizes the seriousness of the FTT diagnosis, and we now have formula galore.  For now.
- Aidan has stopped fighting his prilosec.  It may taste nasty (anything compounded with sodium bicarb would be pretty foul) but he's really lowered his standards and now he (usually) takes it like a man.  I'm pretty sure his taste buds have died.  During yesterday's barium swallow, he was given a 2oz bottle of barium and we were told he needed to ingest about half an ounce.  He gulped down all 2oz and cried when there wasn't more.

The bad:
- Our boy won't drink.  His MO is to wait until he's STARVING, and then drink just enough not to be starving anymore.  He needs 900-1100 calories every day.  We are fighting just to get 500 into him.  And our bar (and expectations) has fallen so low that if we do get 500 calories in, we consider it an enormous win.  It's usually closer to 400.  How will he ever grow?



The ugly:
- Mommy.  I'm the ugly.  I'm worried about him and angry about everything and mean to everyone.  Everyone's helpful suggestions infuriate me (No, I can't forcefeed him every meal via medicine dropper.  No, I can't flavor it with all of the food he's not allowed to consume.)


Everything everyone says makes me angrier.  "My son was always small, and now he's 6' tall."  Oh, okay.  I'm sure this is fine then.  I mean, as long as it worked out for you.  "My daughter's a picky eater too.  I understand."  No, sorry, you don't.  He's not a picky eater.  He's prohibited from eating.  This isn't the same thing.  Not even close.


I am part of a group of 250+ moms of children exactly Aidan's age.  I find myself drifting further and further away because I have less in common with them with each passing day. 

• A handful of them are pregnant again, already.  Many of them are actively trying to conceive.  The thought of having another baby who could have the same (or worse!) problems fills me with dread.  I love my son dearly, but I am 100% certain that I do not want to do this again.
• Normal daily discussion often centers around food.  Not only do I have nothing to add to this conversation, but I'm also angry and jealous about everything they say.  There are lots of "I have a picky eater" complaints.  I want to physically shake some understanding in to those mothers.  I would give anything for a picky eater.  Because a picky eater is still an eater.  I know this will come in time, but the "right now" is so hard.
• When "what's for lunch?" isn't on the menu, there's a lot of conversation about developmental milestones.  Of course there is, 250 parent of kids born within weeks of one another are absolutely biologically required to compare notes.  But again, I have nothing to add.  Because of the months of time Aidan spent in food/reflux-induced pain, his development really slowed down between 6 and 10 months.  Aidan is gross motor delayed and speech delayed.  Not a ton, but enough.  His peers at daycare are passing him by, and it's so, so hard to watch.  It's even harder to read "my baby doesn't do enough tricks!" threads.  No, he doesn't clap.  He won't wave.  He won't give you a high five, blow you kisses, or tell you he's soooo big.  But boy can he contort his body to avoid the pain of acid reflux.

So if you haven't guessed, the hardest part is definitely staying positive.  Recognizing what he's great at, where the good news lies, and how to celebrate all of the amazing things about him.  I need to do more of this, I know.

Here's how it all went down...

We've had a long week.  I've spent a lot of time thinking and wondering and trying to figure out how everything went so wrong so quickly.  I'm getting ahead of myself though.

For the past week or so, we've been struggling to get enough formula into Aidan.  It doesn't taste great, he's not old enough for flavor packets, and it's starting to seem like he's associating eating with misery.  Eating isn't interesting or fun, so he's disinterested.  The new MO is to wait until he's starving, then eat just enough not to be starving any longer.  He needs to consume 900-1100 calories/day, and we struggle to get 500 into him.

(enter pure speculation)

On Monday, we believe that Aidan accidentally ate at school.  I know, I said "accidentally ate."  My kid is notorious for scooting around on the floor while others are eating and licking up their crumbs.  And "crumbs" in an infant room can be a pretty substantial meal - on any given day, cheerios flow freely and pancakes, waffles, scrambled egg yolks, toast, and cheese are never in short supply.

(not so speculative)

Tuesday brought misery, screaming, and more misery.  Even his teachers commented that they hadn't seen him so miserable in weeks.

Wednesday, more screaming, more misery and I thought I should have his ears checked.  Because, you know, it's an easy fix.  So an hour after bedtime, we sat in the pediatrician's waiting room, wishing for ANYONE to be on late duty other than Dr. B.  But no, of course not.

Dr. B is kind of a an enormous jerk.  He disapproves of the way we are proceeding with the GI (he recommended one GI.  We went with another.).  He disapproves of feeding tubes (which we'd like to avoid but will certainly do if we need to.).  It was a very negative visit in general, but he diagnosed an early ear infection and prescribed antibiotics.

Straight to Rite Aid at 8:30 at night to fill the Rx, where the careless pharmacist mislabeled his bottle.  Thanks to some mom-vigilance, Aidan wasn't double-dosed.  Thanks a lot though, Rite Aid.  Wednesday night was screaming, screaming, and more screaming.  Refusing bottles, but screaming until he passed out.

Thursday morning brings more of the same.  He won't eat.  Won't even open his mouth.  And everyone says that when he's hungry, he'll eat.  Only, he doesn't.  Not at school.  Not at home.  Not at all.

By Friday, he's getting dehydrated.  No wet diapers.  No energy to do anything but cry himself to sleep.  I have to do something.

90 minutes we wait for the GI.  The GI, who barely looks at him, doesn't examine him, and pronounces him "fine."  He orders up an Upper GI and a Scope, and says we'll "deal with feeding" later.  He's not worried.

I just about lost my mind.  I somehow found myself in the parking lot of the Pediatrician's office, waiting for them to open from lunch.  When they did, I brought my screaming, whimpering, hungry boy in and refused to leave without help.

Two hours later, we were finally in with our very favorite nurse practitioner.  She determined pretty quickly that it was the amox that was causing the food refusal.  Specifically, the red dye in the amox.  It seems pretty obvious now that I"m reading it, but let me assure you, it wasn't super obvious to us.  Probably because it came on the heels of what we believe was an accidental fooding.

We discontinued the amox immediately, and within about 12h, he took a bottle.  12 more hours and he was happy, eating, and enjoying life again.

This week, we hope to regain the half pound that he lost last week.  We also need to get his Failure to Thrive labs done (another story for another post), and schedule his Upper GI and Scope.

Things I'd love to tell you

It's been so long since I've posted a real update, and there are a slew of things I'd love to tell you.

- Things on the medical front are wonderful - we had a few little bumps in the road, but Aidan is on track and doing wonderfully.
- Because of our medical speedbumps, I've had to give up nursing - but it's been a wonderful and freeing thing.  I enjoyed the time I was able to breastfeed, but it's come to a reasonable and logical conclusion.
- My mental health has never been better - with things going so right, I can't help but be deliriously happy :)
- I've been surrounding myself with good friends who keep me grounded, sane, and laughing.
- I totally don't even notice the arthritis anymore.

I would *love* to tell you all of those things and more.  I'd really love to.  But that's not reality - not even a funhouse mirror "kinda sorta" approximation of reality.

The reality is, things aren't going well.  As a human adult/wife/mom, I am falling apart.

As you probably already know, we are really struggling with Aidan medically.  He's been taken off food and put onto Rx formula.  Feeding is a nightmare that really requires its own post.  Suffice it to say, for now, that he's barely eating and is only getting about half of the minimum caloric intake he needs.  Nothing we try is helping, and we've tried pretty much everything.

Because of our medical mishaps, I've had to stop nursing.  It's painful (yes, still), and it makes me miserable.  This is not how I wanted this to end.  I miss it, a lot, and even though it's wonderful to see him so much happier, I am feeling worse and worse about not nursing.  I feel like he doesn't need me anymore.  I know how stupid that sounds, but there you go.

I'm miserable.  I love my husband and son but I hate my life.  I don't want to blog or take pictures or make memories, because I don't want to remember this time.

I've been pushing all of my friends away.  Most people don't understand or know what to say.  And I don't feel like a good enough person to listen to other people's problems right now.

And I'm still in awful pain, all the time, unless I'm on meds.  I'm 27.  It's really just not fair.

HM4HB

Packing you up, all snug and ready to travel.  I don't want you to be too warm.  I want you to get where you're going, because you can do some good there!

I'm talking, of course, about the last of my pumped, frozen milk.

After getting the crushing (I'm not being sarcastic.  I have tears in my eyes as I write this.) news that my own baby can no longer nurse or drink my pumped milk, I immediately resolved that what was left would NOT go to waste.  I asked around and ultimately posted on Philadelphia's Human Milk 4 Human Babies (HM4HB) facebook page.  A quick blurb letting potential milk needers know where I live, how much I've got, and that I'm eager to find someone who can benefit from my stash.

I almost immediately got a response from a young mother hoping to have my milk for her baby girl.  The baby was born a bit smaller than Aidan, but was diagnosed with IUGR and was having growth problems as an outside baby.  Some tiny (imagined?) thing nagged at me though.  I found myself picking apart her story.  She friended me on facebook and I was suspicious of everything about her.  No recent pictures of the baby.  Link to a blog that hadn't been updated in a long, long time.  All of this screams "stressed mom of high-needs baby", but it just didn't feel like the right fit.

A few clicks around the site brought me to Anya.  Surgeries have prevented her from producing milk for her sweet little boy, Tommy.  Tommy is so tiny and so new, and I'm so, so happy to help him thrive, even in a teeny tiny way.

I'll be honest, it really made me wish I was still pumping and storing and had more to offer.