Saturday, May 1, 2010

Here We Are Again

Image courtesy of Zazzle.com

All those compare/contrasts of our older and younger daughters over the past 3 months have just been trumped. Here we are again, with this freakin' reflux. Just like big sister.

Disclaimer: I'm in a whiney mood. Although I'm well aware that this is not life-threatening and I thank God every day for my otherwise healthy baby, this is damned frustrating and there is nothing so cathartic as good whine.

Flashback to Febrary 21st, West Jersey Hospital pediatric unit.
Patty, nurse in pediatrics: "Does she spit up if you don't elevate her upper body?"
Me: "Yes."
Patty: "Does she sometimes wake up and scream for no reason?"
Me: "...yes..."
Patty: "Does she arch her back and do you find her in this arched position when she's been sleeping?"
Me, just realizing: "Oh no. I mean, yes."
Patty: "Ok, because I think she's a poster child for reflux."
Me: *bang head on wall* "I never thought about it till now."

Between the diabetes (mine), the non-stress tests, the tachypnea , the jaundice, and the heart murmur...all relatively small and controllable, but just scary enough to be, well, scary - I never once thought that we'd have another refluxer. We did that! We paid our dues, right?

Apparently not.

2nd Disclaimer: Infant reflux is usually no biggie. I mean, put in perspective, it's just annoying: They scream sometimes. They often puke and soak their clothes and yours, or projectile vomit across the room and somehow hit the couch, but they usually thrive anyway, and grow out of it by 4 or 5 months old. Sometimes they have pain and if their pediatrician is merciful they'll give you a little baby Zantac. This is a foul-tasting peppermint-on-steroids antacid that your baby will spit out at first but most will learn to like, since it's cooling when it goes down. Maddie didn't get the memo about learning to love Zantac, but Ellie eats it up. Then sneezes.
But all in all it's usually nothing serious. They still eat well, they're still happy most of the time, and they grow out of it quickly. A lot of doctors, including our former pediatrician who "treated" Maddie, called it " just a laundry problem".

Except sometimes it's not. My girls have the kind of reflux that hurts a lot. This is often called "severe infant reflux". It's so different from regular-old infant reflux that I wish they would give it a different name so we could stop sounding like melodramatic hypochondriacs when we explain why our baby isn't gaining much and is eating less. This diagnosis means that your baby learns that it hurts a lot to eat, more than they can ignore and more than Zantac can handle - so hey! Let's just not eat!
Your job is then to coerce them to eat with soothing things like swaddling, white noise, rocking, and if they're old enough, making rice soup (mixing formula with a bowl of rice cereal, letting it thicken, then mixing in more and spoon-feeding the thin rice/formula soup in). Or you can try switching the paci for the bottle at the moment when they nod off and pray they'll take a few glugs before they wake up and realize that HEY! I'm EATING! NOOOoooooooo!
All that was how Maddie got to her bare minimum oz. a day. "Make sure she eats at least 25 oz. a day, minimum. Oh, but don't ever force-feed her." , said crappy pediatrician. Riiiight. Feeding her in public or at someone's house was the worst, because frankly, it looked insane. Shhhhhing a flailing baby who is struggling to get away from the evil monster bottle. I'm sure many people thought we were crazy or over-worried parents who were force-feeding the poor kid. When Maddie was at her worst, I often heard:

  • "Don't worry about it. " Ha ha. You have your child be miserable, throw up, and refuse to eat bottle after bottle that you try in vain, and see how not-worried you are.
  • "Babies eat what they need. She's just not hungry." Really? Why does she scream, root for the bottle, latch on, take two sips, and melt into tears? Yes, most do regulate their apptetite fine. I'm sure yours did, oh well-meaning but ignorant person. This one does not, because it hurts her too much to eat.
  • "Would this have happened if you had breastfed her?" (Only got this one once, but it still smarts after all the angst I had about never getting her to nurse.) Yes, and had that worked out I would have had to quit nursing and pump so she could have rice cereal mixed in to thicken the feedings and keep what we could in her stomach. Do they include that tidbit in La Leche League pamphlets?

There are two types of refluxers in the severe reflux category, really: Spitters and Silent.
Maddie was a spitter, always draped with a bib or cloth diaper. Always losing a quarter to a half ounce with every burp. Occasionally christening the floor, the wall, the crib, your hair, with spit-up. I can't tell you how many baths she needed or how many showers I needed because she lost her lunch all over both of us. This happens to a lot of reflux parents, though. The heartbreaking part of the constant spit-up was that you had to work so hard to get the bottle INTO her in the first place, and then - BLECH! - out it came. Not cool. They are supposed to gain 1/2 to 1 oz. a day in the beginning. She didn't gain for a few months and I finally got very diplomatic with her pediatrician and demanded a referral to a pediatric gastroenterologist. The specialist from CHOP helped her a lot and in a month or two she was significantly better. She was 7 months old when she started with this doctor, and we think a year or so when she was done with reflux meds for good.

Ellie is 3 months. She was 3 weeks when Patty named her the poster child for this lovely disease. She is the other kind of refluxer: silent. That means she doesn't often spit-up. It does come up, (gross!) and so it goes somewhere else. She's an aspirator - she sometimes sucks it into her lungs. She wheezes, chokes, gasps, Oh! it's lovely. And scary. Aspirators are at risk for pneumonia and other fun problems, but so far, thank God, Ellie just shows some labored breathing sypmtoms. Until this week, she rarely lost any formula at all. However, this week she's vomited 3 times. Hooray for Christening Uncle Nick's new house! But we think the pukiness may be because she's taking a little more now, and her little stomach still only holds so much.

You have to feed these reflux kids smaller amounts more often. Forget about getting to a nice 5 oz. bottle, 5 times a day schedule. E gets about 8 or 9 bottles a day, and 2 oz. is fine. 2.5 is an accomplishment. Like big sister, you have to do the same stuff to get her to eat. You can't really feed her very well when you're out of the house, mainly because it looks like you're crazy and DYFUS should come very soon. Then there's the syringe. When Maddie got really bad, and wouldn't eat for the whole day or something, we'd feed her by medicine syringe - 1 ml. at a time. Just enough to keep her hydrated. We hated it, to us it was hitting rock bottom. :-) Yeah, with Ellie we do it daily. It works pretty well, and most of the time she likes it. We talk, we sing, we do finger plays, and we squirt tiny bits of formula into her mouth. It's really not as ridiculous as it sounds. She eats, and it's quicker than convincing her that the bottle is not her enemy! Setting up bad habits? Well she's going to be on solids in a few months anyway, I consider it training-wheels for the spoon.

Ellie hasn't gained quite like she should, but she is still at least gaining. Her breathing worries me, but we're giving the changes her CHOP doctor has made a chance before getting totally freaked out that the breathing problems that landed her in the NICU and the ER (wheezing, retracting at the neck, rapid breaths) are still quite visible every day. She still contorts her little back into an arch a lot too, and you just see her and think, "that can't be good/comfortable". She turns her head to the side too, and she's rubbing the hair off the side of her head (instead of the back where most babies lose it from back-sleeping).

My biggest worry: that what cleared Maddie's symptoms up and made her feel better -and eat like a healthy baby - wasn't the meds or the changes to her feedings but the fact that she was getting older and moving on to solids, which stay in the tummy better. Maybe all the meds (don't get me started on how many different meds and how much it freaks me out to be giving them to a baby!) don't really help and we're just in for the long haul here. And that could mean we have MANY more months of this to go with Ellie. Every day counting ounces, trying to comfort her tummy-aches, wondering if she'll eat enough and if she does, will she puke, etc. Or she could get better really soon and, like Maddie's reflux days, this will all be forgotten. I like the latter outcome better, let's go with that.

Because literally, I didn't give this one thought after Maddie turned a year old. Every now and then Miss M would get sick after chugging water (she still doesn't care for milk!) but for the most part those worrisome, frustrating days when we would spend all evening alternating who would try to coerce a little liquid into her - they were completely, blissfully forgotten.

At bottle time now I get flashbacks and forget which child I'm holding.

Because reflux SUCKS.









4 comments:

Anonymous said...

:-(
:-(
:-(
:-(
:-(
Love,
Mom

Anonymous said...

I know this sucks. I'm sorry. :(

Has anyone mentioned maybe putting her on a high calorie formula so she can take in less but still gain weight? I don't know if that's done for refluxers, but it's just a (well-meaning) thought.

/heidi

Megymelly said...

Her weight was actually decent on Tuesday when I brought her in for the virus so I don't think she qualifies yet. "Slow but steady" was what her doctor said. I'll take it.

Doris said...

I know how you feel. Kayli was a silent spitter and would always seem hungry, but never ate. I had always wondered if it was cause I was nursing and not producing enough milk, but after reading your article I realize that was not the case. The only thing Hershey did for us was give us Zantac, which helped but not enough. I hope Ellie grows out of it quickly.

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