Friday, March 13, 2009

Feeding Micropreemies

It's not fun.

Not. Fun. At. All.

I've been meaning to do a new eating post for a very long time, but every time I sit down to do it I get discouraged and stop. The truth is that it's very complicated and there are no clear cut answers. Actually, there are very few answers at all and after more than four years of doing it I have very little sound advice to offer anyone.

All I can really offer is empathy. Feeding these girls has honestly been one of the (if not THE) most difficult hurdles on our journey, and one that we have yet to overcome.

All in all I think we have made a lot of progress over the past year. But just when I start feeling like we are in a good place with eating and weight gain, something happens (like RSV or another bout of pneumonia) that sets us waaaaaay back and brings all of those terrible, paranoid feelings to the surface again.

Eden had a really bad week last week. She was sick with another cold, which turned into pneumonia again, which in turn led to over a week of severe regression in her eating, and probably close to a pound of weight lost. Now, given that she had just FINALLY surpassed the 25 pound mark, 1 pound lost is a major, major deal to us. We went from making comments aloud about how she seemed to be filling out (as subtle as it was) and seeming overall slightly less skinny and quite a bit more sturdy, to once again noticing every rib and the slightly sunken in look to her face that makes us (John and I) more than a bit edgy and glum.

We feel like we need a plan, but at the same time feel like we've not just exhausted all of our ideas, but also our energy/motivation/want-to. It has been four years, after all.

So here's the last four years in review...

For the first couple of years, the girls drank bottles of Expressed Breast Milk (EBM) fortified with Enfacare formula to 27 cal/oz. When the EBM ran out we switched to straight Enfacare, still at 27 cal/oz. It was never easy, particularly with Eden. We struggled to get 2-4 ounces at a time in the beginning, but gradually over the second year they would drink 3 or 4, 6 to 8 ounce bottles at a time. At their worst we would struggle to get 8-10 ounces in a day, and at their best, Holland might drink 24-28 ounces and Eden 20-24 ounces.

We introduced rice cereal and baby food on the usual schedule and honestly never had any real luck. I can't say that my kids ever finished an entire jar of baby food in one sitting between the two of them. Holland again did somewhat better. Eden always had trouble swallowing pureed foods without gagging, and many meal ended with big vomits making it seem ridiculously pointless and depressing. We relied on the bottles for the majority of their calories for such a long time.

Around 18 months we went to 3 bottles a day, and around 2 we cut back again to 2 bottles a day trying to get them to eat more food. We discovered that they really preferred table foods of all types to baby food, and started having a bit more luck.

Well. Maybe I wouldn't call it luck. We had to bust ass to get them to eat anything at all. That's the truth. For close to two YEARS we had to practically tap dance on the ceiling to get them to eat. They required just the right amount of distraction, without distracting them too much, so they would allow us to put food in their mouths. We tried for months to use positive reinforcement with each bite, and that worked a little bit. Sometimes. But soon we discovered the power of the television. We could put a high interest DVD on and they would become much less resistant to eating. We made progress.

The vast majority of the progress we made was totally as a result of trial and error, and my own background and training in behavioral psychology. Our doctors offered us very little helpful advice, and I didn't really know anyone with older preemies to bounce ideas off of or even to vent to. Since that time I have come to realize that we are SO NOT ALONE in the feeding woes. In fact, our issues have been relatively mild considering what might have been. We had gagging and vomit with Eden, and serious reluctance and avoidance with both girls, but it wasn't every day and through it all they kept eating, even if some days their intake was extremely minimal.

I have read about other people's experiences with feeding therapy, and it seems like a lot of the techniques that other therapists offer are really similar to the things we kind of came up with on our own. So, I like to think that we did okay, even though I have a lot of guilt about all of the meals that ended in tears and utter frustration for everyone involved. Sure, I knew the importance of making meals a "happy time" and didn't want to create a (more) negative attitude toward mealtimes and food, but there were many days when I had just HAD IT and didn't feel like I could take it anymore.

Around this time last year I was really feeling at the end of my rope. Eden was in the hospital in February, and I remember talking to John about "where do we go from here?" I was honestly beginning to consider that we needed either "official" feeding therapy, or we needed family therapy to help us get past all of the negativity we had come to associate with feeding our kids.

We made a concerted effort to back off a little. We knew we couldn't back off entirely, but we worked hard at giving the girls a little more say in the matter and respecting their wishes. We tried to relax more, be more cheerful, stop when they were done, and quit with the outright bribery. It was far from perfect, and we still had an occasional bad meal, but overall things got better.

This past July, when the girls turned 4, we stopped the bottles altogether. It was extremely hard for us, because it was something that was finally EASY. They liked the bottles, drank them without a problem, and still got a good chunk of calories from their high cal milk. But I felt like it was an important milestone because they were getting set to start preschool, and we were starting potty training. I wanted them to feel like "big girls" and I felt that getting rid of the bottles would be good for them socially and emotionally, even though it was difficult for John and I (and Nana!) to see them go.

After stopping the bottles, they both lost weight. I think Holland lost close to 2 pounds, and Eden maybe 1. Their eating, however, definitely picked up.

Nowadays they eat an excellent variety of foods, and neither is what I would classify as "picky." They generally eat 3 meals a day, with 2 snacks in between. We have more good days than bad days, and on a good day I think they eat what anybody would consider a fairly "normal" preschooler diet. They both have particular food that they especially like, and each has come to me on numerous occasions and said the most wonderful words..."I'm hungry."

There are of course, a few clinchers. The most major clincher is that, left to their own devices, they would each eat a bite or two on their own then completely lose interest and quit eating. As far I can tell, they would joyfully waste away into nothingness. Well, of course we can't let that happen, so we end up feeding them almost every bite of every meal. And, as much as they have become accustomed to their routine, they eat best when watching TV, drawing, or playing while we feed them. Meals easily take between 45 minutes to an hour and a half. On average, we spend at least 3 hours a day just feeding them.

When I think back to how things used to be, I can recognize our progress. At times it makes me feel like I should just be grateful for what we have. At the same time, I can see that we have completely stalled in our operations and I am feeling drained of my gusto. Part of me wants to just do what's easy...and I guess that means feeding them in front of the TV for another year or more to see what happens. The other part of me realizes that it's time to move forward. They will be five this summer, and they really should be on track to feeding themselves.

I know what I have to do. I have to turn the TV off, sit with them at the table for three square meals, and just LET IT GO. Don't talk about it, don't give in...just let them feed themselves. I know they can do it. I know they WILL do it. Well....I think they will, anyways. But it's still so scary.

It's scary because they never really regained those pounds lost when we stopped the bottles. They MIGHT regain them by the time their fifth birthday rolls around, but who knows? It doesn't help that each time I get my self psyched up to do it, someone gets sick, stops eating, and loses weight.

I mean, my kid is 4 1/2 years old and isn't even consistently at 25 pounds. What does that mean? Does that mean I am a terrible mom? In denial of the fact that she should have had a g-tube a long time ago and saved myself years of frustration? Or, does it mean that I have saved her a lifetime of tube feeds, and taught her to really enjoy food?

The thing is that there is NO clear answer. I feel like overall I have made good choices considering our circumstances. Sometimes there is a nagging doubt in my mind, but at other times, when I see her scarf down an entire happy meal from McDonald's, I feel better. The thing is that NO one can say that she would be bigger, stronger, healthier, or happier if we had had the tube put in. In fact, it's just as likely that she would not be any of those things.

But for the love of all things holy! What I wouldn't give to have back some of those hours lost to feeding, and to avoid any of the hours still to come...

I'm not sure how much I have left in me.

53 comments:

Sarah M. said...

**hug**

Feeding micros is so hard. And so draining.

For us, the tube has been a means to an end to teach Sydney how to truly enjoy how to eat. It also has taken an enormous amount of stress off of me, which helps her, haha! So far it is working, and she's absolutely thriving with the extra calories. So if it ever comes down to it, it doesn't have to be tube or food. It can be both! :)

Emily said...

Billie, I honestly can't even imagine my mental state if we'd not gone the tube route. I have so much admiration for you trying to do what you feel is best for Eden and it's just shameful that the doctors haven't given you any guidance.

Is there a particular reason why you guys haven't done official feeding therapy? For us there has been a stark contrast between us trying various feeding techniques and a trained professional trying those same techniques.

I hope things get easier for you. I have to also echo what Sarah said. A tube in no way means that you have to give up food. She can still scarf down happy meals with a tube any day of the week. Dakota adores food now and it's only because we did choose to go with the tube which took the stress and pressure off of everyone when it came to eating.

Anonymous said...

What I have done with my 25 weeker (4.5) is ALL meals are in front of the tv. Its fine! Who cares? Etiquette can come later.

I feed first, and when its to a level that appears acceptable, I leave the food, leave the kid in front of the tv with a fork, and don't look.

Most days, this leads to more eating after a break. If your kids aren't ready for that, let them eat with their fingers. Don't comment! My child used the fork when ready. Just like the potty and everything else.

I also use chocolate milk in HUGE sippy cups as an after meal/between meals snack. Big calories, even better than the bottle!

Anonymous said...

I forgot to say that you are doing great and think of all of the good things that you thought would never happen with your kids that did. This too will be a memory.

Lindsay said...

Billie,
I wish I could give you a hug and just sit with you and talk. I have the same issue!! My son was a micropreemie and he could MOST days care less if he ate a single thing. It's getting a bit better for us but it's still on my mind constantly. Calling when he is home with my husband and asking what he is eating still. During the baby years (he is 3.5 now) he NEVER finsihed a jar of baby food at one sitting either. I actually used to have one of those baby feeders and I would be baby food in it and then squeeze it in his mouth and he would HAVE to swallow it. I know it seems so harsh but there were days I was that desparate. MOST days I have the TV on while he is in his high chair and sometimes he will get so engrossed in that, that he will just shove food in his mouth OR let me shove it in without really thinking about it. Most tims he will ask for something and eat 2 bites and tell me he doesn't like it.

Anyway, NEVER ever feel like you are a bad mother because of this. Feeding micros is SOOOOO hard. So consuming. And reading that blog, you have tried so hard and are so conscience of it. You will NOT let them starve and fade away.

You are such a great mommy! never forget that!!!!!

p.s. we just had pneumonia too and lost 2 lbs....VERY FRUSTRATING!!!! it's always something isn't it???

Jacqueline said...

Hi Billie,
I don't even have kids, but somehow stumbled across your blog awhile ago. While I don't have any advice I just wanted you to know that I think you're doing an amazing job, and your girls are beautiful. And I really hope they start eating like people in food competitions, who can stuff multiple hot dogs in their bellies in minutes!

Becky said...

I just wanted to tell you that I am thinking of you and that I hope it get easier, even if just a touch.

juneheller said...

Billie,

I love reading your blog. . Thank you so much for sharing your story so openly and honestly.

I do not have a micropreemie, and I have no clue what it's like to raise a set of micropreemie twins (well, maybe a clue, I am a faithful Holland and Eden blog reader!), but I know what it feels like to doubt yourself as a Mom.

Let me just tell you, you are an excellent Mom. I wish you were my neighbor, I'd come over with some chocolate.

Kate said...

I want to echo what others have said about a g-tube. My son was not a micropreemie, but after his first brain surgery, he lost the urge to eat because he does not ever feel hungry. He dropped weight quickly while we tried to figure out what, exactly, was going on.

Getting the tube was a huge blessing and allowed us to stabilize his weight.

Now, at the age of 3, Joshua *will* eat, but not much because again, without a sense of hunger, eating is more of a social thing for him than anything else. But because he has the g-tube, I don't have to stress about trying to get enough calories into him via mouth, so I'm able to enjoy what he DOES choose to eat rather than worry that it's not enough.

Having a g-tube doesn't relegate a child to a lifetime of tubefeeds. And it eases the battle over eating & takes a huge load of stress off you, the parent. If Eden & Holland had tubes, you could feed them overnight and then still serve them their 3 meals/2 snacks during the day, which would allow them to feel "typical" during the day at school and whatnot, but would provide them with the calories they need during the night.

((((( hugs )))))

Anonymous said...

Billie,

You are a wonderful mom! You and your husband have done a great job parenting Holland and Eden. As a fellow mom to a micro, I just wanted to chime in that a tube doesnt doom them to a lifetime of tube feeds. Anthony is a few months younger than H&E and his tube should be out shortly (2-3 months) This tube has allowed us to have SO much less stress over food. At the same time it is not a gaurantee of anything. He is 25ish lbs on a good day so no extra weight gain for.

At any rate you have done what you thought was best for the girls and I think you have no need to second guess yourself. We have done "offical" feeding therapy and for us the most important thing was making sure the therapist was using techniqiues I could mimic and didnt find objectionable, if that makes sense. Didnt mean to write a novel, just wanted to show some moral support!

Jimmie said...

Billie - thank you for posting this battle with food all in one spot. Over the past 18 months or so, I've been using all your tricks with my own little one (he wasn't a preemie, but he had a couple of digestive issues that made him learn that eating and drinking hurt). Thank you - without all the ideas I stole from you, I'm not sure how we would have gotten enough calories or fluid into him. I know it's easy to doubt yourself - but just remember that you're such a pro at this Mom thing that other people are even stealing your ideas...

Anonymous said...

We finally found success when we worked with the Nutitionist at Dr. Youngs office, that is when she had one. My son, with mild CP didn't necessarily swallow the food we put in his mouth and most of it dribbled out due to the lack of muscle tone. We tried the Peidasure route but with little success. We now order Kids Essentials which is kind of like a formula/Pediasure milk type drink. It contain 1.5 amount of calories in each 8 oz. serving and is the main source of our son's daily nutrition. It is the stuff some kids have put right in the feeding tubes. He drinks it out of a cup but it is packaged like a juice box and comes with a straw if you girls are able to do that. He is almost 4 and now weighs 29.3 pounds. There is hope out there ! You can also use this in milk shakes, add juice to it to change the flavor if necessary. He usues signs for drink now and prefers this to anything else although we are always excited when he actually eats real food.

jamie said...

billie,

first of all, i love your blog.

deciding on a feeding tube is SUCH a hard decision...i struggled with it. milo is not a micro-preemie, he is a preemie-preemie (born six weeks early), but due to other issues (like pvl) he has had feeding issues since birth. in the nicu they told us that it was difficult for preemies to figure out the whole "suck, swallow, breath" thing but soon a "light bulb" would go off and he would be able to take a bottle. well, we are still waiting for the "light bulb" and at 15 months he still has not mastered the bottle (although he does much better with solids)...anyway, we came home from the nicu with no tube and milo barely scraping by on bottle feeds, but once home we couldn't get him to take enough no matter how hard we tried his weight was falling off the curve. it was such a hard decision because we felt as though we were taking a big step backward, but we did decide to get the tube for milo. in some ways it helps...but it isn't perfect either. since he has had the tube vomiting has become a huge issue, and his weight is still very slow to go up, also, he loses weight whenever he gets sick, even with the tube. but, i am glad milo got the tube, and as far as a lifetime of tube feeds, well, i hope that eventually we will not need it anymore, and i think with feeding therapy and hard work feeding tubes don't have to be a permanent solution.

Lina said...

I don't remember if you have tried this or not, but have you tried to use some pediasure during sickness? That is what we have used, because Ethan stops eating when he is sick also. We have gotten to the point with him that we don't force anything and just let him eat his favorites, while trying to introduce new things. We know that in time he will eventually add new foods to his diet. We had him on baby food until he was close to 3, which is when he finally at table food consistently. Most of his meals consist of PB&J, chicken nuggets, mac and cheese and other pastas. Like I said, we have snuck in a few other things here and there, but nothing consistent. The pediasure has really helped us to get through those hard times.

I don't have experience with the g-tube, but it sounds like you have a lot of great advice here. I just thought I would offer one other thing to try.

I would definitely go to feeding therapy. We have done it and it has helped tremendously. They really gave him some great techniques, which he finally listened to. We also found that he loves dips, honey mustard, ranch, mustard and ketchup. We put it on just about anything, especially new things and he'll eat them. He won't eat pizza without ranch dressing. We were told that sometimes it has to do with waking up the mouth, so giving him things with a "zing" to it is really helpful. They said that difficult eaters will tend to eat just about anything when it has something like salsa or ranch on it. Hope it helps and that you find some answers soon.

Anonymous said...

Feeding is a huge issue and it's one they don't prepare you for when you leave the NICU. I have 26w1d girls and one had an NG tube for a year and the other had a gtube for 5 years. Lauren had the gtube and also has CP. The weigh ins were horrible, the days were draining. We gave up our bottles at 4 and it was miserable.

At age 7.5 I can say it's gotten easier, a bit. Maggie is still tiny at 35 lbs (on a good day) and Lauren is almost 40lbs (on a good day).

The dr's kept saying, oh they'll improve at 3 (nope) at 5 (nope) and it only has started to get better at 7. Maggie still drinks pediasure to get most of her calories but will eat a small portion of what is given her. Lauren will eat like she's been starved for a month and her CP just burns up the calories.

I don't think there is a magic answer for any preemie. We just do the best we can. You're doing the best you can.

Gina

Ellen said...

Hi. First off, you are an AMAZING mother. You are doing everything you possibly can, and I hope you really know that.

I related to so much of what you said. We have had feeding issues with Max since he was a baby. Because of the cerebral palsy, he has issues chewing and swallowing, so when you put food into his mouth, a lot of it comes out.

We, too, have spent a lot of time feeding him and working on his feeding. He is also a very skinny boy. My husand is the one who ends up feeding him a lot of times, because I get more emotional about it.

Max is 6 and weighs 32 pounds. Sabrina, who's four, weighs 38 pounds. That really got to me.

We give Max Nordic Naturals Omega-3 oils, to help him get more calories, and sprinkle a calorie powder into foods and drinks as often as we can. I know there are a few of them, the one we use is Scandical (sorry if I'm repeating anything you've already written about at some point). We also give him lots of avocado, a good, healthy fat, mashed up. He drinks Ensure.

Max eats most meals in front of a DVD player. While I do not love this, it helps to get the food into him. I say, you do what you have to do.

Keep up the wonderful work, Billie. You are an inspiration to us all.

The Buckley Family said...

Billie,
Thank you for posting this update/topic. We have been struggling big time lately with the kids - Annabel & Johnathan gagging themselves at times during eating and Mady just not wanting to eat much at times and all 3 not being great about chewing. I know it's "normal" that kids can go thru phases where they don't eat much and are fine but when you have micropreemies it's a much larger worry/issue, especially when doctors are hounding you about their weight! Your words gave me some reassurance that we're doing okay and just to keep chugging forward. Best of luck to you and the girls, just remember there's a lot of us in this together!

Jamie

Taylors said...

Billie,
Ariana is starting feeding therapy this month, and it is a special behavioral program called S.O.S. that is 6 weeks long and supposed to yield great results. At this point, our issues are definitely behavioral (since she are chewing & not gagging), and they sound very similar to what you are going through. I will let you now how it goes. Maybe it will be our respite?

I, too, refused the G-tube against her doc's recommendation (we switched docs), and I am SO glad that I did. Although Ari never really had trouble gaining or maintaining weight (thank goodness) due to slow metabolism(?), she has never had interest in many real foods besides fruit & I have always worried about her nutrition. I, too, do the distraction, reinforcement, forcing, feeding her every bite past the first (crying on the inside & sometimes the outside) routine every mealtime. You are doing everything right as far as I'm concerned.

My OT's 26-weeker is 9 years old now and has always been tiny but she has learned to love food (finally!). This gives me hope. Basically, as soon as my OT's daughter started being more active & playing sports, she learned to eat what she needs to sustain her activity level. Of course, she also has a very high cal diet.

Anyway, sorry for the looong post. It is so hard but you are not alone.
Elisa

iceehot said...

Feeding is by far one of the most difficult and emotionally stressful things that I have dealt with thus far (even with a g-tube).

Keep up the good work, you are doing an awesome job!!

Jen said...

First of all, I love your thoughtful and honest blog and think your girls are beautiful.

I am an SLP and I often see former preemies and micropreemies for feeding therapy. It sounds like a consultation with a feeding therapist (usually an SLP or OT) may be beneficial to you and your family at this point--and it doesn't necessarily commit you to regular feeding therapy. I also like for my patients to have a consultation with a pediatric dietician who understands children with different needs and their families.

I hope things get easier and wish you and your family the best.

Anonymous said...

Oh, Billie. (and John). Man-oh-man. I remember when you first wrote about feeding these girlies-- and I remember laughing ruefully when you wrote the "How I thought it would be" post and got to the part about meals.

All I can say is-- I hear you. I would feel the exact same way. That has got to be the hardest, most draining thing.

A close family member almost died from anorexia nervosa last year(after lots of treatment it's still touch and go). And his wife was talking about the hard, hard thing about food issues was that you HAD to eat to live, that mealtimes HAD to happen, that it wasn't something you could abstain from or change, and how much of our culture is built around meals, and how much of her time was spent preparing meals, worrying about meals, counting his calories taken in vs. calories burned-- ugh. It just took up so much emotional energy, so much physical time.

Plus-- you've been doing this with TWINS the whole time! Anyway, all of this is to say-- sending my best!

-Sadie

alice said...

Billie, thank you for once again sharing of yourself so openly and honestly. I'm not a parent, and I can't even remember how I came across your blog months (years?) ago, but your candor is what's kept me coming back. Thank you for sharing the frustrations as well as the joys - it helps even those of us who are going through different battles take heart, knowing that we're all making our way through life, even when it feels like we're standing still. Or going backwards!

Wishing you some peace and solace around this - here's hoping for some hungry daughters to make it easier on you!

Kathryn said...

**hugs**

Just chiming in with the several other moms that it doesn't have to be g-tube only or even g-tube for life. Use it only when you need it and when you don't need it anymore, you get it taken out and she just has a little scar. Still focus on feeding therapy. The feeding tube can just give you a little less worry.

jungletwins said...

Oh gosh. You have been through so much and you are such a great Mom. Every decision you have made for your girls, you have made out of love, without any regard to how much work and exhaustion you were taking on yourself. Your devotion is selfless and beautiful. I'm constantly inspired by you and your wonderful family, how you conquers every obstacle and live to tell the tale.

Big brother, Little sister. said...

Hi Billie,

thanks again for sharing your life on your blog.
Feeding/eating is such hard work and we do it all day everyday!
Cooper is 4 with Athetoid Quad CP from full term birth injury and is around 13kgs so just a little heavier than your girls.
The CP just uses up so much energy which makes for a super fast metabolism and skinny mini kids!
We add polyjoule to all meals to up the calories and let him eat whatever pretty much.
I hope that things ease a bit and I look forward to hearing more about holland and Eden in the years to come.

Zack's Mom said...

I feel your pain...I know your pain. I cry a lot. I'm so helped by reading your blog...you haven't given up, you haven't given in. We're in the same boat...feeding tube? He's 18 months and pretty much exclusively bottle fed. It's exhausting and taxing and I'm so tired of buying food only to waste it and so tired of vomit. So so so tired of vomit. Anyway, I think you've done an amazing job.

Jennifer said...

Gosh Billie,

You wrote exactly what I'm dealing with. Arianna, 28weeker who just turned 3 is exactly like your girls. I'm convinced she would be very happy to eat nothing all day (unless it was M&Ms). I'm convinced the only reason she weighs 26 lbs. is because she drinks Pediasure... alot of pediasure and with that all the money that would go toward our retirement. At 3 years old I still have to hand feed her at least half of her meals.

I don't have advice - we did feeding therapy and just said goodbye to our nutritionist and even when she was having a 'good streak' and eating really well for days on end she wouldn't gain anymore than her bad days.

We'd have the option of a tube if she fell off the charts again for at least 6 months but I don't want to see her get to that point again.

For now I have hubby give her her baths at night because I cry when I see her bend over in the tub and can count every ridge of her spine and every rib in her little body.

It seems no matter what we do or what we try feeding time is a major stressor in our house and I'm very worried about creating a negative relationship with food (and me cause I force her to eat)

Tobie said...

Hey Billie--
A thousand thoughts on this! We went through this same issue, feeding therapies in and out of the house, GI docs giving their two cents, expensive disgusting formulas, tube or not?, in the end we did nothing like you said. We just stopped everything and let our guy decide how much to eat. He's thriving better than ever now on whole milk and table food. He'll never be a big guy but he's not wasting away and no surgery or tubes. Go with your gut.

Anna said...

Dear Billie.

You have all my sympathy. I can't think of much except a small trick. Popsicles! After dinner. Either juice or yoghurt-milk ones (recipe below). I usually make them and my girl watches, but if she wants she can stir the sugar in, and if I feel like cleaning the counters I let her ladle the liquid into the molds. Then there's the wait for the popsicles to freeze. This is important, because it creates an expectation. Third, she has to ask nicely to get it, if she is not good I tell her she has to behave if she wants a popsicle. Sometimes she can eat two or three in a day, AFTER dinner (never BEFORE!). Juice ones are made from fresh apple juice, plus sometimes some orange juice, and I also add some sugar. Yoghurt ones are made with whole milk yoghurt (I buy one that also contains cream), whole milk and sugar. Each yoghurt popsicle will contain about 40 g of rich yoghurt, whole milk, and about a teaspoon of sugar (dentists, please don't read this). Do your daughters eat chocolate? I make a chocolate-rich cake that contains lots of eggs and butter....she helps me to make it, she licks the batter from the bowl, and the cake is gone very fast! Best wishes!

Bird said...

So I'm going to be really contrary here and say that for us, the tube wasn't all that it was advertised to be. Charlie went home on a tube and we weren't sure why--he was either exhausted or had trouble swallowing because of brain injury. Because our goal was oral feeding, we were on a bolus schedule which was hell for pretty much everyone at our house. Charlie screamed, I cried, and there were a lot of ugly moments. We started tying the bottle every chance we could get just to avoid the evil tube. In then end, he took all foods by mouth and the tube was removed. Once he started moving, it's been difficult to keep weight on him and like Eden he looses significantly when he's sick. He is a good eater, but CP kids are working very hard and burn a lot of calories just doing everyday activities.

So in a long-winded way, what I'm trying to say is that tubes aren't for everybody and it could have just as easily been the same horror that feeding time is.

Bird said...

I forgot! Not that you asked for tips. . . but. . . slippery elm. They sell it at health food stores and it's cheap. It helps keep the esophagus feeling good even when they're refluxing. We give some to Charlie every morning in his oatmeal. It doesn't stop the spitting up completely, but it helps us a lot.

Allison said...

Holy Batman! Can you say comments? You are so loved. First of all you are such a great mother. We all deal with so much guilt every day about so many things but let me tell you girl~GUILT is a useless emotion that we put upon ourselves. Your courage brings me strength every day but more than that, it provides so much for your daughters. More than you will ever know!

Anonymous said...

Hi Billie. Faithful reader here! I spend much of my time either trying to feed or worrying about feeding my 3 yr old former 25 weeker. You could be describing him with your feeding story. I just wanted to say that we have also opted not to do the feeding tube. All of the preemie moms we went to for advice said they saw an initial weight gain, then it leveled off and there was no difference in weight gain. Also, puking was still a big issue.

Your girls really are doing so well, even though I know it has been a nightmare with the feeding issues. It is such a basic instinct to feed that is denied preemie-moms. Unless you have been through it, you can't imagine how hard it is. But it is HUGE that your girls are able to tolerate solid foods. Keep being a wonderful Mom, and have faith that time will continue to heal your beautiful daughters!.

jo said...

Hi Billie, massive hug on its way to you from Scotland. I'm sorry you're struggling with this, and it breaks my heart when I read about you questioning your abilities as a mother. (but I understand where you're coming from as I doubt myself all too often!) All I can do from all the way over here is let you know that you always act in the best interests of Holland and Eden, and you and Jon have had to make some tough, TOUGH choices when it comes to your girls.

As we would say in Scotland, 'keep the heid, hen, yer doin' braw!'

Jo xx

BusyLizzyMom said...

Elizabeth is 4 and our meals are often still 1hr with insistent reminders to eat, chew and swallow. Elizabeth is not picky but still cannot chew a lot of foods and textures and rarely has a desire to eat. Elizabeth does not say she is hungry and the only way I notice she is hungry is because she gags/retches/coughs.
I think one of the hardest most isolating things was feeding Elizabeth. No matter how hard I looked there was no one trained with oral aversions. Like you I used my behavioural training and vowed 'no tube'. Elizabeth is bigger than your girls as she is 30lbs now so my worry is less. We are now working at her eating faster and chewing but it is painful. Sometimes she makes me doubt myself as she can gobble down a cupcake independantly and in seconds. It is such a fine line between supporting their independance and screaming 'eat please eat'.

K said...

I feel for you so much on this, especially the large chunk of time involved and the amount of patience. As I read your blog I had a thought... Are the girls adept enough to feed EACH OTHER? If you told Holland that she had to make sure Eden ate everything in the bowl and vice versa would that add bad pressure or the right touch of sisterly compassion and encouragement?

I'm sorry this continues to be an issue for your family? Do you and your husband relish an evening out alone in a restaurant? Hmm, have the girls ever eaten out? I mean, pretty dresses and the whole big-girl thing?

I can feel your exhaustion, though, and know that adding one more thing can be the straw that breaks the camel's back, so-to-speak.

Do they eat at school? If so, how do they eat?

I admire you for keeping off the feeding tube. Is it sometimes tempting? I think I'd do what you've been doing, though, and avoid it if possible.

I'll remember you all in my prayers. You've come so very, very far. "This, too, shall pass."

Anonymous said...

Billie,

I'm sorry that feeding the girls is so frustrating and draining. And you have to go thru it at least 3 times a day - ugh! I hope it gets easier and I hope you can be easier on yourself, too!

XO Amy

Twinkletoes said...

I honestly think you are doing a FANTASTIC job. My NON-preemie almost 5 year old was just weighed and he's only 32 pounds - WITH clothes on. You are doing a great job! Keep your chin up!

Vickie said...

Billie, you and John are doing great. All the decisions you've made have been the right ones. I cannot get over how grown up the girls look in the pics!

Nakengi said...

I feel you. Feeding issues have been one of our biggest micropreemie issues. Our little one has a G-tube, and we are trying to encourage more solids. There is not a lot of help out there when it comes to feeding issues. Her doctor doesn't seem concerned with her lack of weight gain, or inability to swallow fluids.

The Hull Munchkins said...

I've always wondered if there was any micro preemie who eats without drama. As much as I understand the ultimate frustration of not being able to normally feed my preemie, I wish my dd would eat at all.

Abby quit eating completely 1 month after coming home from NICU (reflux + oral aversion). The g-tube/Fundo was a life saving must for us as she refused to swallow and had so much vomiting.

We never stopped trying to get Abby to eat... anything! I swear people didn't believe us that she just wouldn't eat. The phrase "she'll eat when she gets hungry enough" doesn't apply to preemies. In fact, they would starve themselves to death!

Feeding has been such a difficult thing. She now has a gj-tube b/c she was still having discomfort with bolus feeds. AHHH! It never ends.

I don't know why I'm even writing except that this subject really frustrates me.
-Patty

abby said...

We're lucky that Hallie has, at best, sluggish metabolism, so weight's not a huge concern for us (though she seems to have not gained much lately, but she started out in a good place). Feeding, though...you know what we have gone through and have seen some of it yourself and we're very much in the same boat as you guys are. We're trying to give her more control, but like you, are afraid (based on experience) that this will mean that Hallie will eat two bites and be done, even when offered a favorite food. And she still needs distraction in the form of TV/DVDs, which our friends (the ones not yet lost...which is an ever-declining number) find appalling. And the vomiting, while MUCH better than it used to be, continues to be a factor for us (and probably yet another reason we've lost some friends. It's really hard to clean vomit out of the crevices of hard wood floors and it doesn't do much for carpet, either, come to think of it).

I don't see an end in sight, though, like you and John, we've had to find ways of keeping our own anxiety at bay and not get at each other's throats/take it out on one another when we have the inevitable bad stretch.

I guess where we're really lucky is that we have this odd little community of ours, and have had this, since the beginning. So we kind of know what to expect and that we are not alone. And that makes a world of difference.

therextras said...

Hi, just responding to the post, not all the comments. Seems like all the focus is on getting the food in. Maybe I missed it, but is there any question about their digestive capacity? With focus on their (dominant) diagnoses, perhaps your medical providers have just not thought to explore other avenues...?
(Enzymes? Food allergies?)

No need to defend if you've already done this. Just trying to help. Barbara

liz.mccarthy said...

Oh my goodness. too funny (well your subject isn't too funny, but the fact that you and I were having some of the exact same issues and we both blogged about it).

here's my post on the exact same thing:

http://lizmccarthy.blogspot.com/2009/03/sick-1-pound-down-drain.html

Billie, I know you've watched me tube feed kaitlyn years ago and watched her vomit all over me, remember that our goal was to get rid of the tube (and we did) and we still are dealing with feeding issues.

I don't know how you've gone so long without one, I would have jumped off the Golden Gate Bridge personally. I admire your tenacity (and don't ever feel like a bad mommy) I KNOW how hard you work to get weight on H&E. But is a tube still a thought at all?

Even if you were to add a tube now you'd always be trying to get rid of it. but...?? who knows a tube is a blessing and a curse, there is no easy answer.

Google the Graz feeding clinc in Austria (yes Austria) for some ideas.

We did intensive feeding therapy, at this moment, we really aren't using what we learned anymore. It's what got us off the tube, but as K got older, she started battling us and we started giving her control and lo and behold, she started eating more. We too used the tv to feed her(we got rid of it) I KNOW that if I brought back the tv that I too could spoon feed her and get her to gain some weight. Somedays I so want to turn it back on. Only other micro moms can understand how extremely frustrating feeding our kids is. It takes so much time energy and frustatation.

Maybe we should chat on the phone and share ideas? I don't think I have your number any longer (but I think you still have mine? feel free to call and let's chat (and comiserate!)

Anonymous said...

Hi Billie,
My son is not a micro-preemie and he doesn't have any feeding issues, but I recognized myself in your post because I am a single mother so I care for him by myself and sometimes I feel like a very crappy mother. I often wonder if I could/should do more, say when we get home from work and all I want to do is to have some time for myself instead of playing with him.

In my good days I know that we can always do more, but perhaps the issue is less thinking about what we could do, and recognizing what we have done. Your girls always look happy which is really the important thing. In my book you clearly have done (and continue to do) a hell of a lot. So, give yourself the credit you deserve and pat yourself in the back (as my pediatrician liked to say.

ana

Anonymous said...

Hi! I've been reading your blog for awhile and I'm SOO glad that you've posted about feeding issues! That is my sons #1 issue. He was a 24 weeker who is now almost 2. He is interested in food, likes to cook and play dishes. He puts all kinds of foods in his mouth but always spits them out-even purees. We are relying on bottles for now as every test we've run came back normal. He *just* refluxes repeatedly and vomits regularly. GRR. I know your pain and hope that science can explain micropreemie feeding issues very soon. Your a great mum! Hang in there!
*hugs*
Monica

JLH114 said...

Hi, Im a psychologist too:)
This isnt really my area but I do specialize in kids with special needs so I'll offer my thoughts...
I am impressed that they are not "picky"- that issue is half the battle, now you just have to figure out the independence and "filling up" parts. I've known other kids on gtubes that developed food aversion, medical complications, and other consequences- they are not the answer for all kids.
I wonder if there are strategies to help increase the girl's awareness of their bodies when it comes to eating, such as reading hunger signals (do they?), the idea of filling their stomachs, and then feeling "full". I imagine bc of their CP and whatever else comes with "preeminess", they might lack such physiological awareness. I'd use Social Stories to explain and cognitively rehearse this process (even though you've gone over it upteen times!). Social Stories would be a combination of words and pictures at this stage. They might understand through an analogy- ex, their stomachs as "fuel tanks" to run their "cars". Maybe you can you think of a little girl theme:) You can cue the girls for any hunger signals- their small tummies, grumbling, thinking of food, etc. Id use a relevant visual (a stomach- or whatever the analogy is). As they eat, you can show how the visual stomach is filling up, level by level. You might use velcro and the levels could be parts of a picture- when it fills completely up, the picture is complete. When they are full, they can pat their tummies and see how they are bigger and how they feel full inside. They now have "fuel" or energy or whatever you call it and they get to now use it for something fun. You could go further with a behavioral plan and have each full tank added to a reward chart. Be creative, be relevant, be attuned to their particular interests and ideas. I would back off on direct encouragement, cajoling and feeding them yourself while working on this other "angle" of teaching.
Just brainstorming here-

Solace said...

Hi Billie,

I can totally relate to what you're going through. Projectile vomiting and the whole nine yards. My son was about 5yo when eating started to become easier for him. He's now 8yo and still has a little trouble, but for the most part, he eats like a champ!

Do your girls still get the same milk/formula they did, when they drank from bottles? If not, that might help to give it to them again, but in a cup.

Or you might try...

Nutren Jr. - It's the only high-calorie drink that doesn't make my son gag. It's designed to be not so filling, like other high-calorie foods can be. I use it to make his oatmeal, instead of water, and he drinks it several times a day.

"Super Milk" made by mixing whole milk with dry milk powder.

Oil and butter - For a long time, my son had a hard time with oil and butter, but I kept trying and eventually he grew to tolerate it. He even likes buttered veggies, now.

YoBaby whole milk yogurt is one of my son's favorite foods. He eats at least two cups a day.

Basically, I just look at every meal and try to come up with a way to boost the calories. These kids have such tiny tummies, that it's necessary to get the biggest calorie content, in the smallest amount of food.

Here are some high-calorie recipe sites:

http://preview.tinyurl.com/dxpdzc

http://preview.tinyurl.com/cdunv4

My son's blog:
http://sweetiehandsome.blogspot.com/

Anonymous said...

My daughter was 1lb 14oz at birth I remember the days spending an hour expressing an hour feeding & half an hour clearing the sick up & hoping that maybe just a little stayed in her tummy, now 3 years old & weighing 18lb feeding is still a major issue we are lucky to get two mouthfuls of toast & half a potatoe some days, a feeding tube has been offered but we are going private before we decide. Good luck x

Stephanie, 2x preemie mom said...

You sound so tired and spring is here so perhaps you would want to try a fresh approach? If they are apparently oblivious to appetite I suggest resetting the table to be enjoyable for everyone. You could try a sort of Emily Post approach by getting them involved in selecting or making pretty napkins and placemats, designing table centerpieces. Teach them about setting the table formally, start using real china (thick restaurant china and chinese tea cups). A candle at dinner. Try fragrant things to entice them. Let them see Mom and Dad really enjoying wine in nice wine glasses. Get them involved in cooking and making their meals and make them fancier with elegant names, like a yogurt parfait with granola. Have real tea (with lots of milk and sugar). When cooking or baking, have them get their hands into different things to feel the textures in their hands before trying them in their mouths. Peel apples on a crank peeler. A fun cookbook for this age is "Pretend Soup" by Mollie Katzen. Although you increase the fanciness, be careful about too much variety in the foods. Let them get familiar and comfortable with a few foods while introducing all these other new elements. Try adding songs to your daily routine about food, "Oats Peas Beans" is one that comes to mind. Now that spring is here you could try growing a few herbs so they can see them and use them. I would try everything fun other than actually trying to shovel food in their mouths.

Anyway, the fun reason for all this is that you think they are old enough to enjoy a meal at a fine restaurant, and so you are all going to practice at home to get ready for it. Then make the restaurant visit maybe a monthly thing, perhaps at a fancy Sunday brunch. Everyone gets dressed up, Mom and Dad get good food and the girls get to see how much food and mealtimes can be enjoyed.

Now, with the other hand I would give them back their sippy cups of pediasure with no comments about how this is a big step back for them. It's calories and it may give you a break while you try the festive approach to enjoying meals. I might also try cutting back on spoon feeding meals since going to a fancy restaurant will mean everyone uses their own utensils.

One other thing is to keep them very well dressed in warm layers, more than for a typical kid. Yes, spring is here and everyone wants to put on pretty things, but if it is flimsy or shortsleeved put it over warm layers. If you are fighting to get calories in, try not to have them waste calories keeping warm.

These are all ideas we've learned through Florin's Waldorf teachers. They have helped me to see the way things are affecting the whole family, so if you can add some enjoyment back to meals for you and John maybe someday the girls will want to join in. If these suggestions seem like too much to attempt, just add a few fun things and once they catch on you will find it more fun to add other things.

So, that's my 2 cents. At least you get to have more wine and it's to benefit the children :). They are doing so well! They have grown so much because you got those calories in!

John and Becca said...

I also wish you knew the awnswer to feeding!! I bet all you want to do is sleep (undisturbed) until spring time. Me too. Thanks again for your blog. Keep up the great, thankless hard work. It is paying off! I get to read your blog maybe every few months and your girls look great. Slowly but surley.

Kara Melissa said...

I totally saw myself when you wrote about dancing on the ceiling to get your daughters to eat. I turn on the entertainment to get my son to eat sometimes. No one ever told me it would be so challenging, the feeding part. But it is. Way to go for your hard work and determination.

Beth said...

Hi, I can sympathies with you. I too have micropremies. They are now 9 ½ yrs. old. They were born at 25 ½ - 26 weeks. Doctors seem to think 25 ½ I say 26 weeks. As far as feeding goes, I can relate to your feelings and efforts. I too remember dancing on the ceiling. However, one of my twins has had a feeding tube since birth. And still does. Yes 9 ½ years later. He started out with a Nasal Gastric tube (NG Tube) goes through the nostril down to the stomach, for five years. Then he got a G-Tube put in when he was five years old. We have been to the best of the best feeding therapy in NY where we use to live. With follow-up therapy at our home, for 3 years. Then we moved to NC, and went to feeding therapy, for 3 years. Then we stopped going because it became an issue (time) with school starting. We just started again, about 10 months ago. The therapist comes to our home. It took me a long time to find someone in NC that would come to my home. Home feeding therapy seems to work better for my son. He seems to relate to the eating process a little better. There is no magic and he is doing o.k. He does not eat enough to even reduce his formula intake by ½ can. He and his brother are the same size. His brother has always had to be entertained and still does, to eat. We did and still do what you do (different techniques) to get my one twin (without the G-Tube), to eat. I still have to ask him what he wants to eat, at meal time. He will not say "I'm hungry and come running into the kitchen to eat. He is starting to tell us when he is hungry. But my twins same age friends, will get food and eat. And it only takes them a few minutes, instead of 45-60 minutes per meal. I do understand, totally. However, if I could change one thing that we did in reference to feeding my twin with the g-tube, I would have made him eat by mouth. We did try and still do. He gets the same meals his brother gets. However, he will lick the food, take little nibbles, and only if we constantly tell him to. It is grueling!
When he finally came home from the NICU, 11 ½ months, we after he was born, we were so happy to get him home that we did not push the feedings. He was not really allowed to have food by mouth, due to gut issues. But knowing now, what I didn’t know then, I would have made him eat and take the risk that he may get sick and land back in the hospital. It sounds terrible, I know, but we thought we were doing the right thing then, and I can honestly say that I do not think that was the correct decision. The doctors were of no help. They would say, “Give him a little taste and see how he does.”
In my opinion, having your child eat food by mouth is the best thing you could do for her.