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Failure to Thrive - Karen's Musings
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Failure to Thrive
Ellie is officially "failing to thrive". She weighed 7 pounds 7 ounces on January 4th. She weighed 7 pounds 8.4 ounces on January 22nd. We spent a full week adding extra calories to any expressed breast milk (EBM) bottles she received (3-4 per day while I'm at work, none on the weekend), and pushing feedings every 3 hours during the day.

Today she weighed... 7 pounds 8.4 ounces.

So we're going to do a trial of Zantac, knowing that it probably won't help because she's not showing ANY of the classic signs of reflux except for failure to gain weight, but also knowing it won't hurt either. And she has an appointment tomorrow with a pediatric gastroenterologist who will hopefully have some more answers for us (though I'm not counting on it).

My poor, tiny Ellie.


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ailsaek From: ailsaek Date: January 29th, 2008 10:30 pm (UTC) (Link)
What's Ellie's Hebrew name again? I'll ask morning minyan to daven for her.
estherchaya From: estherchaya Date: January 29th, 2008 11:05 pm (UTC) (Link)
Thanks. It's Eliana Miriam bas Esther Chaya.
marag From: marag Date: January 29th, 2008 10:47 pm (UTC) (Link)
::hugs:: I'll ask my mother and MIL to pray for her. Avi and I will think "grow, baby, grow" really really hard in her direction :)

I hope the doctor has some ideas.
estherchaya From: estherchaya Date: January 29th, 2008 11:06 pm (UTC) (Link)
Thanks. Here's hoping.
kalki From: kalki Date: January 29th, 2008 10:56 pm (UTC) (Link)
Miss Ellie is in my prayers! GROW BABY GROW!
estherchaya From: estherchaya Date: January 29th, 2008 11:09 pm (UTC) (Link)
Thanks so much!
skatured From: skatured Date: January 29th, 2008 10:58 pm (UTC) (Link)
She doesn't cry alot? I think that was our main key...that and of course Morella was gaining weight so slowly and it kept falling. I am anxious to find out how much she'll gain tomorrow, it will be a full 16 days since the last weigh in.

But I know how you feel. I was crushed. I hope you get answers tomorrow -- I'll be thinking of Ellie.
estherchaya From: estherchaya Date: January 29th, 2008 11:04 pm (UTC) (Link)
she almost NEVER cries.
either_or From: either_or Date: January 29th, 2008 10:58 pm (UTC) (Link)

i'm thinking about you all and hoping the doctor tomorrow will have a good idea!
estherchaya From: estherchaya Date: January 29th, 2008 11:09 pm (UTC) (Link)
Thanks. Here's hoping!
gnomi From: gnomi Date: January 29th, 2008 11:50 pm (UTC) (Link)

She and all of you are in my thoughts and prayers.
magid From: magid Date: January 29th, 2008 11:51 pm (UTC) (Link)
Keeping her in my thoughts and prayers.
estherchaya From: estherchaya Date: January 30th, 2008 01:33 pm (UTC) (Link)
thank you very much
yeishlitikvah From: yeishlitikvah Date: January 30th, 2008 12:07 am (UTC) (Link)
Awww poor Ellie-bell.

grow grow grow :sending messages telepathetically:
estherchaya From: estherchaya Date: January 30th, 2008 01:33 pm (UTC) (Link)
From: have_inner_lady Date: January 30th, 2008 12:11 am (UTC) (Link)
Sending prayers, hope for quickly effective solutions, and relief/gratitude that all three babies are otherwise doing so well.

There must be an answer. She is growing in length and head circumference, we have wonderful medicine and science, and you are very good at following directions!
estherchaya From: estherchaya Date: January 30th, 2008 01:35 pm (UTC) (Link)
I'm sure she'll be fine. We have all sorts of positive signs with her, particularly the head circumference. My concern is the long-term effect of not growing, which is why we're trying to jump on this now rather than continuing to wait. If she's not growing, something's wrong, and if it continues, she could deteriorate. Fortunately, my doctor didn't make me be the aggressive one... he jumped on it.
hannahsarah From: hannahsarah Date: January 30th, 2008 12:46 am (UTC) (Link)
Oh my, I'll be davening like crazy for your little Ellie.

Come on kiddo, you've made it this far!
estherchaya From: estherchaya Date: January 30th, 2008 01:36 pm (UTC) (Link)
She's not in any imminent danger. She's otherwise doing just fine and developing appropriately neurologically speaking. But her lack of growth IS cause for alarm, so we're trying to move on it as quickly as possible. Thank you for keeping Ellie in your tefilos.
chite From: chite Date: January 30th, 2008 12:49 am (UTC) (Link)
*hugs* to you and also to Ellie.

Micah had none of the symptoms of reflux and yet he had reflux. We did not find out until after the FTT diagnosis. He was born at 7,7 and went down to 6,3 in the first 10 days of life and did not regain birth weight until 5 weeks. I know your babe is in a different situation, but she's about that size now.

I know that no one wants to hear "I tried this" but here goes. Micah really benefited from skin to skin contact with at least 3 hours a day with just a diaper against me with no shirt, wrapped in a wrap sling. I know she can't nurse (which is why most people star the skin to skin), but even just the skin to skin has been shown in many cases to help FTT babies to start growing.

Best of luck.
estherchaya From: estherchaya Date: January 30th, 2008 01:16 am (UTC) (Link)
Thanks. Ellie is the one who DOES nurse (quite well), so she gets a lot of skin-to-skin time. Hopefully it really IS as simple as reflux and the Zantac will clear it right up. Otherwise, I'm sure we'll figure it out sooner or later.
ellipticcurve From: ellipticcurve Date: January 30th, 2008 01:10 am (UTC) (Link)
Awww, poor l'il mite. Here's hoping she makes like a seed and sprouts.
estherchaya From: estherchaya Date: January 30th, 2008 01:37 pm (UTC) (Link)
here's hoping. :)
zis770 From: zis770 Date: January 30th, 2008 01:29 am (UTC) (Link)
Oh darn! I was worried when I read your last post. I will also daven for her and keep her in mind and hope you find the reason soon! There's also the elemental formulas which are apparently euchy but really help tiny babies pack on the lbs. Aharon Mordechai was taking that a bit in the hospital. Keep growing everyone including Ellie!!!
estherchaya From: estherchaya Date: January 30th, 2008 01:40 pm (UTC) (Link)
It's just weird, because it's clearly not an issue with my milk because Sam and Abby are HUGE comparatively. And it's not an issue with her ability to get milk from me, because we have weighed her before and after feedings and she's been getting an average of 3 oz per feeding (which is what she gets from a bottle). And the weirder part is that increasing her feeds and increasing the number of calories in her milk (we fortified her EBM bottles to 22 calories all last week) made absolutely no difference.

It just doesn't make any sense.
cellio From: cellio Date: January 30th, 2008 01:51 am (UTC) (Link)
Ouch. I hope you get some answers soon. She is in my prayers.
estherchaya From: estherchaya Date: January 30th, 2008 01:45 pm (UTC) (Link)
Thank you. It's much appreciated.
rlitterst From: rlitterst Date: January 30th, 2008 02:23 am (UTC) (Link)
You've got our prayers too. *hug*
estherchaya From: estherchaya Date: January 30th, 2008 01:46 pm (UTC) (Link)
Thank you.
fheyd From: fheyd Date: January 30th, 2008 02:55 am (UTC) (Link)
Will a pediatric gastroenterologist be able to tell if it's a problem in how she's absorbing nutrients or the like? I ask because i agree that it really doesn't seem like reflux. My friend Cindy's first baby had horrible reflux. Poor DJ had to live with a spit rag all but stapled to him because he was constantly spitting-up/all but vomiting. Not that i know about babies though ;)

Either way, i'll keep all you guys in my thoughts and prayers. On a different note, i finally got off my butt yesterday and mailed the goodies i've had for your lovely babies for months! With luck you'll get it this week :)
estherchaya From: estherchaya Date: January 30th, 2008 01:50 pm (UTC) (Link)
Presumably a pediatric gatroenterologist will be able to do that, but I'm not entirely certain. I'll let you know more today after the appointment. There IS such a thing as "silent reflux" where the babies really don't spit up much, but she's still not showing any of the other signs of reflux either, so it's unlikely that's the problem.

I've been meaning to call you, but time just slips away. :-/
pocketnaomi From: pocketnaomi Date: January 30th, 2008 04:36 am (UTC) (Link)
It's so scary when babies have problems you don't know how to fix. I'm sorry to hear Ellie's not doing well, and will be thinking of you and hoping hard they can find what's wrong and help her get better and start growing like a weed.
estherchaya From: estherchaya Date: January 30th, 2008 01:52 pm (UTC) (Link)
I'm not panicking, but I AM alarmed. I'm hoping that the gastroenterologist has some insight today.
tigerbright From: tigerbright Date: January 30th, 2008 03:27 pm (UTC) (Link)
Best wishes.

There are a number of members of aspecialparent who have been through this; use me as a referral if you want to join.

*hugs* to you and tiny baby and the others.
mrn613 From: mrn613 Date: January 30th, 2008 04:11 pm (UTC) (Link)
I hope you get some answers at the ped GI. Did you mention the feeding clinic idea to your ped? What was the response?

Also, I hate to be an armchair doctor, but you should also see a genetic specialist. The way you have described her eating pattern sounds alot like Russell Silver Syndrome.
mrn613 From: mrn613 Date: January 30th, 2008 04:12 pm (UTC) (Link)
ps feel free to email me if you want to discuss off-line. Do you have my real name / email address? I can email you pictures of my daughter if you want.
journeytoernie From: journeytoernie Date: January 30th, 2008 06:52 pm (UTC) (Link)
what about putting her on that special formula for premies? maybe that would help her gain weight?
From: (Anonymous) Date: January 30th, 2008 08:42 pm (UTC) (Link)
that's essentially what we accomplished by adding extra calories to her EBM bottles. All preemie formula is is higher calorie formula. Anyway, having seen the GI doc today, we're moving to an even higher caloric concentration on her EBM for a higher total calorie goal per day, so we'll see what happens.
(Deleted comment)
introducingyael From: introducingyael Date: January 31st, 2008 12:15 am (UTC) (Link)
She should have a refuah Shleima and you should hear only good news from the doctor!
rquintilian From: rquintilian Date: January 31st, 2008 03:45 pm (UTC) (Link)
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