I promise a sweet birthday post next week, after their party on Saturday, but today I need to vent about the whole feeding/eating (or should I say NOT feeding/NOT eating) issue.Aside from the CP and physical development issues, this is one of the greatest challenges we have faced as parents of micropreemies. I have done absolutely everything I can think of to get these kids to eat and I am seriously at the end of my rope. They hate food. I have no idea why. I know that we are not the only family experiencing the food hating phenomena, and with many micropreemies it is much worse. Many preemies experience some degree of oral aversion from being on the vent and tube fed for so long. Many preemies also experience varying degrees of reflux and vomiting that make feeding a nightmare. A lot of these babies end up with g-buttons, where they are fed directly into their stomachs. We haven't had to go that route so far, but it is always looming in the back of my mind when I am struggling to get them to eat. Sometimes I find myself wishing we DID have a g-button so I wouldn't have to worry so much about getting enough calories into them.
My girls are still extremely small. They are small for their chronological age, their adjusted age, however you look at it. Eden is pushing 18 pounds (she was 18 lbs 4 oz at the pediatrician's office today with her clothes on), and Holland is pushing 20 pounds (20 lbs 4 oz with clothes on). SMALL.I justify it every which way I can... John and I are both small. They don't look unhealthy. They're happy. You can't see their ribs (although you can feel them when you pick them up). Whatever. They're still small, and I still want them to grow. People with babies who eat like regular kids have no idea what it is like. They totally take their kids eating for granted. It is so stressful when your kid will not eat. Actually "stressful" doesn't even begin to describe it. It gets so bad at times that I end up in tears. I feel like a failure as a mother. I cannot even satisfy my kids' basic needs. It's really hard to describe the worry/fear/constant ache in the pit of my stomach that comes with them not eating and growing well.
I read that "normal" children between the ages of 1 and 3 should be taking in about 1300 calories a day. Okay, I know that they are not "normal." So, children between 5 and 12 months should get around 850 calories a day. Holland and Eden get about 400 calories a day from formula. That means they should be getting AT LEAST 450 calories a day from food. And they are 2, so they really should probably be getting 600 calories a day from food! That's 200 calories per meal. It doesn't take a mathematician to figure out that 2 bites of yogurt, 3 bites of a bagel with cream cheese, and maybe 3 sips of juice does not equal 200 calories. And that's on a GOOD day!!!
It's actually getting harder and harder to get them to eat. I know they don't have oral aversions. I know that Holland does not have reflux (Eden has some mild reflux). What else could it be??? It has to be preemie related because there are so many out there with similar issues. I don't think that normal toddler pickiness and attitude fully explains it. Although there is a lot of that going on too. Holland will seriously take a bite out of her mouth and throw it on the floor. At the restaurant yesterday I don't think she swallowed a single bite of food. She threw ALL of it on the floor. Well, except for MAYBE one pickle slice. She might have eaten that. How many calories are in a pickle slice?
30 comments:
My 25 weeker does not really eat a lot of adult type foods. We have made up for it by just giving him jarred food. We give him finger foods all the time and hope that someday he will get used to it and actually eat it. One of the doctors told us that a kid will not go hungry, they will eat when they want to and as parents we should not stress about it. So, you give them what they will take. We had Ethan on Neosure formula until his adjusted age 1 and then moved him over to Whole Milk. He still takes several bottles a day along with the jarred food and miscellaneous finger foods. He'll get it in time, so I have not stressed about it. If I've learned anything, it is that if the doctors are not too concerned than neither am I (unless I know something is wrong). They are professionals, they'll let you know when to be concerned.
My son wasnt a premie. BUT I totally relate with the not eating. He barely eats anything. But he is healthy. I get very fustrated that he doesnt eat. He's 19 months and weighs 25lbs. I talk to his dr and she says evnetually they do eat. We have to worry about him amemic and he never eats vegies. So unless the doctor says its time to worry I wouldnt. Your girls look healthy to me. Just wanted to let you know your not alone in the food battle.
Billie,
Sorry these things that most other people take for granted are so stressful for you. I hope that you get more feedback and tips from other families dealing with this food aversion thing. I love that your personality really comes through on your posts...like the "how many calories are in a pickle?" question. You are too cute. I miss you!!
Love, Amy
PS Holland's hair looks very pretty in this picture. I didn't know it was so light.
Just keep pushing that guacamole, it has to have more calories than a pickle slice!! Luv Liz
Hi Billie
I was going to blog about the feeding thing today, totally not anything similar to your issues, of course. But I did want to say that my sister has three kids and all three of hers are extremely fussy eaters. Now hers are not micropreemies, and hers are not tiny, and obviously she doesn't face the issues you do, but I wanted to give you this as hopefully some tiny measure of comfort.
My poor sister, sometimes her kids (2 and 4 - the little ones) will go on a food strike, they just wont eat. They will eat ONE yogurt the whole day. It makes her want to cry. She often does. Nothing she does helps, they just wont eat. She will make and offer a million dishes or choices, but they just clamp their lips shut.
And you know what is wierd, is that they are healthy, normal and NOT terribly thin, just small. I have no idea why, but these kids are fine getting by on so little.
But I can imagine how stressful it must be for you, because as I write in my blog post, one is obvioulsy concerned that they are getting the nutrients they need. (going to post tomorrow, dont read it because I am having a little tongue in cheek moan about feeding my kids and after reading your post, i have zero to complain about)
Anyway, long reply, just wanted to say you have my sympathy and that I think these kids are tougher sometimes than we think. Little buggers!!
I'm alurker and I never comment but I do read often. One thing I did with my 2 yr old daughter who had never ate was I gave her formula in a bottle and pediasure in a sippy cup at least twice a day. Its not the same as eating but it gets the calorie intake up there(I also offered her food right and left but it allowed me to relax a little and know that while shes learning to eat shes still getting what she needs). I'd ask your doctor what he thinks about their eating habits, if hes not concerned try not to worry so much. Many toddlers go through this phase. I'm sorry them being preemie makes it so much worse for you! I don't know if you do this already but also even if the eat the same thing everyday for aweek give them wha t they love what you kknow they will eat . Then slowly add one more thing to that regimen for another week and so on. They are lovely little girls and from what I can tell on this blog you are an awesome Mom!
Woiw many typos up there sorry!
You're absolutely correct in saying parents of children who eat well take it for granted. My oldest son, who is seven, has always been a wonderful eater. He eats healthy stuff....loves salad and brocoli and all the other horrible stuff, too, of course! But, I've never had to coax him or beg him to eat.
My just turned two year old is a whole different story. I had no idea feeding your child could be so frustrating! Now, he was not a preemie, but at two years old only weighs about 23-24 pounds. For a baby who was born weighting 8 lbs 13 ozs, that's small. He has always been on the low side of the growth scale.
Up until just a few weeks ago it as a huge struggle getting him to eat. He wasn't terribly picky, he just wouldn't eat...PERIOD. He was like this as an infant on formula as well. I would sit and cry after waking him to eat because he wouldn't drink his bottle. Many, many days he wouldn't even get close to 20ozs. in.
His pediatrician told me to offer him anyting and everything that was high in fat and calories. She told me to make him a "fat shake" with full fat icecream and full fat half and half. He LOVES those shakes, which have helped pack on a couple of pounds. He has decided he will now eat full fat chunky peanut butter...plain...right out of a bowl with a spoon. I nearly cried the first time he sat down and ate the entire bowl. That is a daily snack now.
As I said, then a few weeks ago it all magically changed! He decided to start eating and eating and eating some more! I have no idea what happened, but he's finally got an appetite. I guess the doctors are right when they say they'll eat when they're hungry. I hope your girls' appetites pick up soon!
Pickle slice = 8 calories. So on the bright side that's only 162 pickle slices to get to 1300 calories. Okay, terrible pep talk.
My Cole is 3 months corrected and we are dealing feeding issues (you probably know that since you link to our blog). We have other preemie issues as well, but the feeding problems, oh my goodness are they are a constant source of stress. Until reading your post, it never occured to me that this could carry over to his older years. Great Billie, thanks for making my night! Just kidding.
G-buttons, oral oversions, CP, developmental delays, words I wish I never had to hear, let alone deal with on a personal level. Dealing with one is stressful, dealing with many of these issues, well I don't think they have created a word that describes how we (micro-preemie parents) feel day in an day out. But then again,that's why the fridge is stocked with lots of beer and wine.
Hi- Try playing music or feeding them in front of the tv. They get so mesmerized they keep eating.
Long time lurker, never commented. Used to do daycare for 28 kids at a time.
The more you stress and obsess, the more THEY pick up on it, and will react.
I know it's hard because of their issues, but I think maybe if you dropped the issue completely, as if you don't care. Offer the fatty foods, allow 20 minutes at the table, and take the food away after that. If they complain, they're old enough for you to say "Breakfast/Lunch/Dinner is over, you'll have to wait till snacktime now". That takes the pressure off them, and you too - I promise - they won't starve.
It just may be possible they've not really experienced hunger before, because as premmies, the nutrition has been pushed and pushed on them. (of course necessarily). Maybe Mama needs to get out of that mind-set too. As two year olds with so many issues, it's doubly important to just drop the stress about it now, which I know is next to impossible, but they can develope even worse eating habits... just because they are two! :-)
The loss of a pound or even two is not going to starve them to death, and it'll tell you whether it's really a valid eating disorder, or a "this is fun to stress mama out" issue.
I can't tell you how many times I had parents in my daycare say their little darling didn't eat. And sure enough, they wouldn't for the first few days, even a couple weeks. But since I didn't have time to pay attention to that child while I was feeding 27 other children... they would start to eat. For them, it became not a big deal, cause they weren't getting the attention/obsession over it they were used to - there was no pay-off. But if they're parent came in or overheard mom asking if they had eaten? They'd drop the cookie, or yogurt cup immediately, and mom would come in the next morning, complaining again about how the little sweetie pie hadn't eaten dinner or breakfast. Yet, I'd sit them down at breakfast time, and they'd eat.
I learned sooo much those 7 years of doing childcare!
Good luck - they're obviously healthy, and go to doctors often enough to keep it well monitored. A doctor however, is going to be more concerned with calories, and may not take behaviors into account - just wanting those pounds to add up, so may be saying "Get those calories loaded on them!", putting pressure on YOU, and not necessarily looking at solving the problem.
Long comment for my first time, huh?
Hi Billie,
This is a struggle that I am dreading with our girls. They're already showing signs of oral aversions, Mady especially. One of my other 2 children was pretty picky as a toddler, and still is, but I know he's getting adequate nutrition. With the twins I am sure it's going to be a battle. You are doing such a fantastic job! I know it's just another worry to add to the heap, so just keep your chin up. Your girls look great! Have you tried making smoothies for them? You can add yogurt, fruit, tofu...whatever you want. Then they can suck it through a straw, and think it's a treat. Good luck!
Okay, you know as well as I do that I totally can't relate with this one. I have the oppostie situation with the "big boy" and it seems to be starting with the little one too. Perhaps we can have them all eat together this weekend and your girls can learn by example, or maybe they can sit on Aidan's lap and take in calories by osmosis, he could stand to give up a few of his pounds. I must say though that I agree with the many posts above that they will not likely starve themselves, and will eat more when they are ready. Hang in there girlie!! I could get you one of those pickle jars from Costco...much love, Jess
Never forget: you ARE a good mom. Your girls are doing great considering all that they have been through and you are the best mom they could ever hope for!
We have good feeding days and bad. The good days are when Sarah inhales some foods that are not high in calories (like frozen wild blueberries). There are days that she literally has 2 bites of food and that's it. She is now almost 18 mo old (14 mo adj) and is still on formula. I think she'll be on formula in Kindergarten. As long as the girls are getting nutrients, they are fine.
As a frame of reference. Sarah weighed 18lbs 14 oz at her 15 mo appt (11 1/2 adj apptmt), so your girls are a little higher on the curve than her!
Maggie,
Actually they are not higher on the curve...H and E turned 2 on Monday. They are 20 1/2 months adjusted! At H and E's 15 month appt they were 17 lbs 4 oz, and 15 lbs 2 oz. Sarah is a big girl compared to us:)
Arrrhhh!! I just typed a super long comment and lost it. :( Here goes again...
I too wish they grew pickles with more calories! Or tomatoes or olives!
Halle of course is at the extreme end of the feeding issues, but I feel your pain in wanting to get your girls to eat. The g-button has taken a lot of our stress away, since we can control the number of calories she "eats." Yet it is also a curse: we cannot get her to eat anything substantial; it sucks taking her out in public hooked up to a pump; people stare and ask nosey questions; you can't order off of menus, borrow a sippy cup at a friend's house, or throw a lunch in a diaper bag and go somewhere. It's just one more thing that makes my baby less normal than everyone else's.
For the record, and I know you understand this, some babies WILL go hungry/starve (contrary to what a commenter said). My Halle would not be here today if we had been given that bad advice!
Okay, off my soap box now...My gut tells me that in time, your girls will become better eaters.
I can only imagine how draining it is to struggle to feed two babies. Not only do they dislike food to begin with, they are in the middle of the picky-toddler-eating years. The good news is that they do not have aversions to food and they have nothing anatomically that interferes with eating/drinking.
Halle's nutritionist told us that her best meals with probably be away from me and/or while watching other children eat. The peer pressure thing *hopefully* will kick in at some point.
OKay, now some ideas floating in my head: Have you tried adding fat/calories into the foods that the girls will eat? I have read about some moms having success with canola and flax seed oils, whipping cream, and butter (just mixing it into whatever the kid is eating).
We're also trialing a product called DuoCal - a caloried boosting powder that we add to Halle's formula. Hallie Lovvorn uses it and has done well on it.
One more: Have you tried Pediasure or another high calorie formula for their "milk?" I'm starting to have deja-vu like we have talked about some of this before...forgive me if we have...
Okay, that's all I've got. :) I can't wait to see the birthday pics. It seems like yesterday I was reading about the big bash at the park for their first birthday!
Oh Billie - You KNOW I understand your pain (having seen my pain first hand and vomit on a restaurant carpet)...You are NOT a bad mom, you are a wonderful mom.
Feel free to call me if you want, I'd be happy to chat live - and as JP said, I was going to suggest a few things that she already has, adding calories to the formula is a MUST, and as JP said for Halle, having a g-tube is a godsend for us - Kaitlyn is gaining, she just hit 14 pounds, and even with all her vomiting. I try to feed her every day, it's VERy frustrating, as she really wants NOTHING to do with it, but I still try - but I know that I can still get the calories in her.
I know too that I'll probably have YEARS ahead of me of tubes, syringes, bags, cleaning equipment, stares from people, and on and on, but she is growing and I don't have to stress about getting food in her.
So again, it's probably too soon for a g-tube decision for your girls, but I know my docs were always so concerned about growth so she'll "outgrow" her preemie issues like lungs, etc.....feel free to chat live and call or IM me if you want.
And most importantly, happy birthday to Holland and Eden! I know it's bittersweet.
Liz
Ah the joys of mealtime! I feel for you girl, I really do. So here is my two cents into your quickly filling penny jar of advice. Pediasure (we use the kind with Fiber) has 237 calories in 8 oz. Collin & Cyrus have replaced the 22/24 cal. coemula with that & get it at nap time and bedtime. So if they drink only two bottles a day they get about 475 calories.
I have not been able to bring myself to allow them to feed themselves yet but once a day. Breakfast and dinner are usually still baby 2nd foods, one 4 oz. jar each with Milk or water to drink and stars or a cracker to supplement. Then we put the Benecalorie supplement into that approx. 100 extra calories per meal.
Now the kicker- Jacks Big Music Show and Blues Clues. If they do nothave something to focus their attention on they get all stir crazy and play or push the food away from their mouths. I struggled with this for a while, TV watching three times a day, but I do what works. Cyrus eats through literally clenched teeth. It can take up to 30 minutes to get a jar of baby food down him, but it gets down him. Collin eats the same amount in just over five minutes.
So there, a few more ideas to think about. Good luck, hon. You are doing great especially with all you have on your "plate", hehehe. Sorry. :P
Billie,
I know about the whole eating thing with Marley. I have a dietician telling me she needs to eat more solids and a nephrologist telling me she needs to take in more fluids so she does not get dehydrated. I just try to compromise and try to find a happy medium. With Marley being 13 mos. adjusted only being 12 mos. she should be eating more than one jar of food a day, but we have keep the fluids flowing and when she does eat it is a struggle keeping in her mouth or keeping it down. It can be very frustrating and having G-Tube always in the back of my mind. As long as they have no deficiencies and are not losing which they look like they are doing well. I would get some help from a dietician and ask what else you can do and to avoid a tube. I stressed to them that I would have to exhaust every avenue before she would get a tube. I wish you the best and try not to stress too much.
Love Heather, Jeremy and Marley
Do your kids see a nutritionist? Do they take a vitamin? Our nutritionist found our 26 weeker lacked zinc and iron this can affect taste an appetite. It was a miracle. She now eats everything. Look for Schiff's Children's Multi-Vit (natural peach flavoring) We started at 1 tsp and work are way up to 2 tsp (recommended dosage)
If the girls are always in the high chair when you try to feed them, change locations. We discovered that Julia knows the high chair means food is coming and she goes on the defensive. We keep little snacks handy so when she’s playing or walking through the living room, we’ll pop a dab of something (i.e. pudding) in her mouth. Most of the time it catches her off guard but she never fights. Just looks at us like “WHAT was that??” and goes back to doing whatever.
Carrie
Oops! A major blonde moment from me! I looked at their birth dates before I posted. Yeah - 2004 is 2 years ago. I think I'm frozen in time thinking it's 2005 - DOH! Sorry for my blondeness :)
One thing to pass on - my older brother was full term and he weighed 18lbs at 1 year and 20 lbs at 2 years. My mom loves to remind me of that when I remark how little Sarah is. He was on the small side until he got to middle school, then he sprouted (upwards AND outwards).
Sending sprout vibes to both Holland & Eden!
I remember those feeding issues all too well. I had a big baby (9 lbs 2 oz) and he did fine for about 6 months, then he slowly stopped gaining. The ped kept saying that it was no big deal - he had a cold, he would be fine. But when at a year he hadn't doubled his birth weight yet (most kids triple by a year), we started adding butter to foods and heavy cream to formula. We saw a ped gastroenterologist who pushed an ng tube. He had a endoscopy to check for problems (none found). We tried drugs for reflux. They never did figure out why he wasn't eating. It was like he would take a few bites to take the edge off the hunger and then wasn't interested anymore. We used Pediasure and found a high cal juice type drink (don't remember the name, sorry) that seemed a bit more refreshing in the heat of summer.
He has always been an adventurous eater - he will try anything, just not eat a lot.
I used to know exactly how many calories were in one golfish, one bite of yogurt, etc. I kept a food diary for weeks. When we realized that he had stopped growing taller (and had fallen way off the charts for weight and height), we finally had an ng tube inserted. He had only gained 1 pound from 13 mo to 18 mo (and less than 1") I HATED it - the questions, the stares, the feeling like I couldn't feed my child, but it did work. He grew 2 inches in 2 months and gained about 4 pounds. That brought him back to the 3-5% level. We probably would have kept the ng tube longer except that he kept getting a cold and we couldn't use it then (he would just throw up all that expensive Pediasure).
For years he stayed at about the 5% weight, 10% height. Finally at age 7, he hit 25% for both! He still eats a wide variety, but he sometimes "forgets" to eat.
Sorry I don't have any real answers, but try different supplements. Like another commenter, my son was starving himself - with a small minority of kids they just WON'T eat enough to thrive. Sorry for being so long.
Billie,
I am a lurker but have been following the twins story for a long time now. While I can say that I have never had a problem with my son eating, I am constantly worrying about him not eating enough as he is tiny. He is almost 2 1/2 years old and 24 month clothes are big on him. As the Dr. put it, he is just not going to be a big kid. His Ped said he may not eat for a week, then he will eat everything in sight. I have found on the days that Cade does not want to eat, if I stress over it, then he doesn't eat just becuase I am stressing over it. I agree with one other poster that said perhaps that because as preemies, the girls always had food pushed at them that perhaps they don't know what it feels like to be hungry.
I do know that now that Cade is older, I wait for him to tell me when he is hungry instead of giving him breakfast at 8 because I should. Sometimes it is not until later, sometimes lunch is not until 2. It seems he eats more and better if I let him tell me when he is hungry.
P.S. My son has had many meals of pickles and catsup!
Hi Billie,
I'm mom of twins a boy and a girl born at 28 weeks and now just turned 2y.o. We also have hard times with my son when time comes to eat. We used during meals to have our kids sitting in their high chairs and they weren't very happy about it. Couldn't sit through the whole meal and soon wanted to get out. Our doc recommended to make meal as a family event. So we all moved to their little table. Now all 4 of us sit around their little table where they use just kids chairs and we use beach chairs for us :) And I think it helped us some. They love it, and our boy started eating more sitting at this table. Have you try something like this yet?
Hiya Billie,
I commented in your guest book but I suspect that it becomes overwhelming to read it and remember what you have and haven't read...however, I did pose a question about the ezcema that I should have done here... so I will post it again... has it resolved itself or is it still a battle?
Kristin,
The eczema is not nearly as bad as it used to be, but it is still a battle. We have a rub-down routine that we do twice a day with Aquaphor (either after her daily bath, or after spraying her skin down with a water bottle). We use 2.5% hydrocortizone on the dry red patches as they flare up. She used to need the hydrocort almost daily, now we only need it about once a week on different parts of the body depending on where it flares up. If we do NOT follow the routine, we are guaranteed a flare up. Also her knees get bad from crawling on the carpet so we often have to keep her legs covered (hard to do when it's 100 degrees outside!).
Hey Billie,
My mom has ezcema and has had since childbirth (as does my significant other's son), and they both are using Whole Emu Oil on their skin and it seems to help especially with the itchies.. you can usually get it at health food stores. It can be quite pricey and anything I've found online has always been more $$ than what I find in health food stores. Hope it helps!
Your girls are beautiful:) We just had twins in September at 31 weeks and they are doing well... are on neocate formula b/ of milk protein and soy adversions. I am very wrried about the future, but we have resolved to just take things one day at a time. I myself have a mild case of cerebal palsy and i have never let it interfere with my life and have done everything i have ever wanted to do.... accountant, married the love of my life, have had 6 beautiful children..... you are doing an amazing job with your girls and the only advise i could ever give is to never say "you can't..." my parents never did, and i always found a way with an attitude of "I can... and I will." Enjoy those beautiful little munchkins:) Francine Spears (frspears@shaw.ca)
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