Failure to Thrive - How to get Emily to gain weight..

I know this question has been ask before but it's been a few months so I thought I would send it back out there.. My daughter was born at 24 weeks weighing 1lb 5oz.. 116 days in NICU.. She came home in May with O2 and has been off it since early Aug.. Everything has gone fairly well except for her eating! We get lots of advice from her Pediatrician, Pulmonary Doc, GI Doc and Nutritionist, we kind of take all the info and pick what works for us! I just took her to GI doc on Tues. and bottom line is, if she doesn't gain 1 lb in the next 6 weeks she will have to go back onto the feeding tube! Of coarse we want to avoid this at all costs.. I know there are many of you out there who have been thru this.. Any tricks or suggestions or even things I might ask the nutritionist would be very helpful! We left that feeding tube in the NICU that's where I want it to stay!!!

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EmilysMama,

Just some questions that might help people respond to your post.

(1) What is Emily's adjusted age now?
(2) How much is she drinking? What kind of schedule is she on?
(3) Breast milk from the tap, expressed breast milk, or formula? If expressed breast milk, is it being fortified? If so, with what? If formula, what kind, and have you tried other formulas?
(4) Has she been evaluated by an OT who specializes in feeding habits?
(5) Does she have reflux? If so, what kind? Little bit of vomit, projectile vomit, "silent" reflux?
(6) What kinds of medications is she on?
(7) What was her feeding like in the NICU? Did she have several rounds of feeding intolerances? Did she have NEC? You mentioned a feeding tube. What kind? When was it in place?
(8) Does she have problems with constipation or diarrhea?
(9) Does she have any allergies that you are aware of?

Best wishes,
== Kate

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1. Emily is almost 10 months actual and almost 6 months adjusted age.. she weighs 12 lbs 12 oz
2. Up until 2 days ago she would eat about 17-20 oz total all day (5 feedings) plus eats alvacado and cereal. we just went back to 6 feedings a day. (and that is already improving)
3. she is eating Simulac Neosure 24 cal, no the docs don't want to switch formula.
4. We go to OT PT and ST every three months, they say she can suck just fine..
5. She is currently on Prevacid 2.5 ml 2 times a day..
she maybe spits up 1 time a day.
6. Other than the Prevacid she takes Diarul and Flovent.. plus the polyvisol w/iron..
7. She had no feeding intolerance in the NICU she was on a regular feeding tube until she went to the step up nursery about a month before discharge when we started with the bottle/breast feeds. (I pumped for the 4 months she was in the hospital)
No NEC.
8. I would say more constipation than diarrhea but even that's not too bad..
9. Nope no allergies..

She just doesn't want to eat.. I have been trying to swaddle her while eating and that seems to help.. I've been adding olive oil, or butter to her food and sometimes to her bottles.. and doc told me alvocado was the best food I can give her!

Any tips and advice would be appreciated...

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I feel like I could have written this post myself a few months back. My daughter too was born at 24wks and weighed 1.7oz her brother 1.11oz . Same oxygen situation and all. She came home eating fine and all of a sudden one day deciding she hated food! She was a torture for a while but has finally begun to enjoy food again. She is now almost 18mos. 15mos adjusted. She weighs 17.4 lbs. Basically everything you have done I did as well. One thing I will say is as long as she wasn't loosing weight they were okay with her slow gains. Some months when we went for a weight check it would be 4oz and sometimes no gain at all. It can be so frustrating when you put such effort into each feeding. Based only on my experience I bet your Emily will start to gain. You are both in my thoughts. Good luck.
Marianne

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With the formula you are on, you mention 24cal. There should be recipe, you need to ask the doctor for it, but you can up it too 26, 28, 30cal (we did 30cal), I think there is a 32 as well, but doctors like to avoid that. And I just looked back, we were on the same formula and we did 30cal, so I know it is possible.

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Duocal is a great product. Your nutritionist should be able to get it for you or suggest where to order it from. It's basically powdered fat that dissolves in any wet food or milk. Perfect for her cereal or avocado and for her formula. It doesn't change the taste or texture at all and will help pack in some extra calories.
Good luck!
Ellen

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If it has only been 2 days since she started refusing the bottle, then it could be a lot of things. Virus? Teething? Reflux?

My son went through a phase at 5 months adjusted where his intake went down to 10 ozs per day (from about 20 ozs per day) over three weeks. I was very concerned, but the doctors said he had to lose 10% of his body weight before they'd do anything about it. This was very frustrating b/c I thought it was pretty darn asinine to wait until a problem became a major issue if it could be head off at the pass. I pursued the issue however. It ended up being that Henry's Prevacid dosage needed to be increased. At the time, he was taking 7.5 mg once a day (the dose that he'd been on since 6 weeks adjusted). He'd obviously gotten bigger and that small dose was no longer therapeutic, so the silent reflux was getting him. I asked if the dosage should be increased since he was about 10 pounds heavier than he'd been at 6 weeks adjusted. The doctors were like "Oh, maybe we should increase it" (duh). Anyway, it got increased to 7.5 mg twice a day, and things got better.

Hope you find a solution that works for your daughter soon.

Best wishes,
== Kate

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We were on 30 cal- I would push push push for increasing the caloried before the feeding tube. At this age it can cause huge issues to go on the tube and can slow eating for the long haul. Duocal is also great! We also added butter to cereal and potatoes and that helped put on the lbs. Good Luck!

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One more thought regarding constipation. One potential problem with acid blockers, like Prevacid, is that some people say that they wipe out the "good" bacterial that helps the intestines break down the food. That can potentially slow down motility. Then, things hangout out in the stomach too long. Some people claim that giving Probiotics to baby can help restore some of that loss of "good" bacteria. Maybe that's something you could talk to the ped or GI about.

I haven't managed to locate empirical studies on it (at least not ones that weren't conducted by the Probiotics companies themselves, which always makes me a bit skeptical). Theoretically, the logic of the Probiotics argument is compelling, even if it hasn't been thoroughly tested. So maybe the doctors will have some thoughts through their anecdotal experiences with Probiotics. Our son's OT said that most of her patients who are on acid blockers long term are also on Probiotics.

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Keep your head up and just plow thru it. I remember all the times my doc told me he would do this or this to my failure to thrive baby or the times he said she had to gain this much weight by this time. Well she never did gain by his time line but he never carried out the threat either. My daughter who was failure to thrive was not my preemie, that was my other daughter but I have been there with a failure to thrive. My daughter weighed only 13.13 at 12 months old, so your daughter sounds like she is doing well for her age. Especially at the weight she was at birth, my daughter weighed 7.13 at birth and only gained 5 pounds in a year. Just remember that you are doing your best, your daughter is doing her best and you will make it. To me just a few encouraging words went a long way. Also, ask about adding more calories by high fat content foods, like powdered formula in her cereal or powdered milk in her cereal or other foods that add lots of calories. Hope my words encourage you.

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I found that when we increased the calorie content, she would just eat less and it would pretty much be wash. we are still struggling with weight (Jackie will be 3 on Dec. 22 and weighs 25 lbs) I have realized over the last 3 years that she gains in spurts. We went from 23 lbs to 25 lbs in only a couple of months but have not gained at all since hitting the 25 lb mark. Our doc never suggested a feeding tube but I probably would have agreed to it since feeding has been such a nightmare from the time. I have never tried Duocal but I just might order some and see where it takes us....

I wish I had the answer. Good Luck!

Also, you might want to ask about Periactin for appetite stimulation. It doesn't work for everyone but I'm pretty sure that without it, we would have been in an even worse situation as far as weight gain.

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I thought I would give you my daughters weight lines at what ages. She was not my preemie but my daughter weighed 7.13 at birth, 13.13 at 1 year of age, 18 pounds at 2 years of age, 25 pounds at 4 years of age when they finally took her off the failure to thrive list, 30 at 5 years of age.

She now is 18 this month and she is 4 ft. 9 inches and weighs 150, she is overweight for her height and has been for years. I think it was that when she finally did cash up on all those extra calories we forced on her as an infant and child she continued to get them when her body didn't need them but her mind was use to them.

My other daugher who was not a preemie but was a overdue baby with CP and breathing problems was not quite as bad but also gained weight very very slowly.

Our preemie has gained weight and is above average for height and weight.

But I have been their and I know how frustrating it can be. Just do what you feel is right for your child, did your heels in if your doctor is saying something that you disagree with, and know that there are those out here that support and encourage you. For me I felt my daughter would be fine although they gave me all kinds of warnings and threats, and it was very frustrating, but I fought back and we are okay. Get second opinions before any surgery. Ask what else can be tried before that step. And then when you feel like crying or need to blow off steam write to your friends here who may not have the answers but will support and encourage you with this journey.

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I have 2 daughters...both full term...one was 5 lbs 13 oz and weighed 15 1/2 lbs at a year and the other was 7 lbs and 17 lbs at a year.. both are great...the littler one has 3 children and is overweight and the other one had our 9 1/2 wk early 3 lb 7 1/2 oz NH baby....both are doing well. he is getting over RSV and is 5 lb 13 1/2 oz at 5 wks....35 wks gestational....

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After reading your stories of kids being labeled "failure to thrive" I have been so lucky that my son has not been labeled by his ped and other specialists. My 26 weeker weighed 1lb 1oz when he was born. After 105 days we brought him home. He more or less weighed the same as his age every time we went to the dr it seemed like. ( 10 months, 10 lbs)

He was on a 26 cal formula, but I cannot remember how much he ate at one time. It wasn't very much because of his acid reflux. We would add butter or olive oil to give him some extra calories. We probably started giving him baby foods earlier than recommended, but he was always wanting to eat what we were eating. And would supplement a pediasure once a day.

When he turned two, he still did not weigh enough for us to turn the car seat around. He is now three and weighs roughly 26 pounds. NEVER has his ped, nephrologist, pulmanory, nutrionists,urologist, or endocrinologist labeled him as failure to thrive. A talk of a feeding tube was never brought up after we brought him home. My little guy has always been very active, on the go, and into everything. They took this into consideration along with everything else we were doing. He is still small for a three year old, but he can keep up with them. I am glad that they looked at the big picture, and not just at the numbers on the scale.

Good luck!
Jodi

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Have you thought about trying different bottles or nipples? It's possible there's something about the bottle/nipple that's causing part of the problem. Maybe the hole in the nipple is too small making it harder to feed or maybe it's too large and causing her to choke a bit. Either way, it could have turned eating into an exhausting or otherwise unpleasant experience.

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The advice and information listed on these postings are so helpful! I'm glad to know that I'm not alone with some of the struggles we have with my son. Henry was born 31 weeks, IUGR, weighing 1lb 10oz. He too, has struggled with feeding and gaining weight. He is 8 1/2 mo. actual, 6 1/2 mo. adjusted and weighs 11 pounds. Sometimes I feel that the doctors make too many changes too quickly and don't give our little ones enough time to adjust to even see if there are improvements.

We started Henry on a Probiotic about 2 1/2 weeks ago and what a difference! I really do think it has helped him. We haven't seen much change in the way of BMs, but he eats now like he "wants to" and not like he "has to." If you've seen this, you know what I'm talking about. He also went from taking an average of 17 ounces/day to 20 ounces/day. For such a little guy, 3 ounces a day is a lot of milk! We made this decision on our own, but did discuss it with our ped and specialists, all of which were ok with our decision.

We've also seen that there is a limit to the amount of calories he's ok consuming. He has been on breastmilk supplemented with Pregestimil. Not sure what the caloric intake is, but we have noticed that he seems at a happy balance... we've tried increasing the supplement on a couple of occassions and it usually comes back up (if he even drinks it), or he seems gassier.

Medications also make a difference on how well he eats and how comfortable he is. The doctors had put him on Reglan with the thought that his stomach would empty quicker and he'd take more, more often. Not so... it caused bad side effects causing him to eat less and burn more calories (due to increased involuntary movement). He appears to be on a good dose of Prilosec for his reflux.

In my opinion, consuming more calories is not beneficial if your child is uncomfortable as a result. You should also think about your family's genetic disposition. My first born was full term and weighed 19lbs at 1yr. At 5yrs old he is only 33lbs, but has always stayed on his own curve and the ped is not concerned. My husband and I are small people. Even if Henry had been full term, I'd never expect him to be a large baby.

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sleep... we were told that sleep and NOT burning calories actually help the small wonders. also lots of love and holding, we believe, promotes comfort and provides the environment needed to thrive and grow.

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My DD is 9mo, 6 mo adj and had her 9 mo appointment yesterday. She is 13 # 2 oz. I saw on her chart that it said "Diagnosis: FTT (Failure to thrive)" My ped has never said anything to me about it, so I asked and he said that officially, a FTT diagnosis is when a baby stays below the 5% for a certain amount of time. He said she is obviously below the 5% for weight, since she is a preemie and as long as she continues to mimic the curve on weight gain, he's not at all concernced. He said in a preemie's case, FTT is a nasty way of saying she's always going to be petite.

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btw, at what age did you guys start giving oil and butter? What about full fat yogurt for the probiotics?

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Don't feel too bad....my littlest triplet was born at 15 oz., had many eating issues and is currently maintaining in the 14 lb. range. She's almost 20 months adjusted, is developmenting wonderfully, and is as happy as can be! Don't let them jump too quickly back on the FT. Stick with it and don't get too discouraged!

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We went through similar situation. My GI suggested feeding therapy and RESOURCE Just for kids by nestle. You can only find it through the internet. Please ask the doctors about this drink. We had so much success! My daughter was not gaining anything for 6 months and finally she gained 5 pounds.

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