What It's Like

Addie suffers from a sensory feeding aversion. Lexi had it too. When one reviews my kids' eating histories, it's not surprising.

When my kids are born, they do not know how to eat. What comes naturally to most full term babies, is a behavior that must often be taught to preemies. Lexi fell into that category. She was on the ventilator for 8 days during which she did not eat. When she came off the vent, the nurses would syringe feed her 3 cc (for reference, 1 ounce is 30 cc) every 3 hours to introduce her tender little insides to food. Slowly, the amount was increased as she tolerated her feeds. Of course, they tried to get her to suck her feeds through a nipple after the first few syringe attempts were successful. But, she didn't suck. She couldn't even hold a pacifier. It wasn't that she didn't want to suck. She physically couldn't keep the pacifier in her mouth. In order to eat, a baby must also coordinate sucking with swallowing and breathing. Lexi couldn't do this either. Since many preemies face this challenge, we didn't think it would be an issue with any of our other kids.

Then came Addie. I have to admit, I had a feeling throughout the pregnancy that she would have health issues. Then, when she was in the NICU, I came in to visit and noticed they had a pacifier in her mouth. But, they had propped it there. She wouldn't keep it on her own. I registered that and knew exactly what was happening, but didn't acknolwdge the knowing. I was so hopeful. She would gulp and gasp and sputter when she ate, but while in the NICU was taking her feeds so they didn't make a big deal out of it. As time went on, she got progressively worse and ultmately began refusing her feeds altogether. She stopped thriving. We went to the GI doctor. When I mentioned that she couldn't keep a pacifier in her mouth, he immedately referred us to therapy. They observed her eating and confirmed the whole suck, swallow, breathe suspicion and we started thickening her feeds so she would stop aspirating her formula.

So, from the start my kids have a horrible time eating. Then, they reflux. They are in pain. They puke up their very special and VERY nasty formula. Sometimes 8 times a day. And, to make things more complicated they have food allergies. No soy or milk. Have you ever tried to feed soy and milk free products to a baby? There's not much out there. While others are introducing table foods and yogurt and letting their infants sample ice cream, my kids are allowed formula, rice cereal and very simple veggie and fruit purees. As time progresses, when a parent should be feeding Stage 3 type textures, my kids are still on the simple purees because everything out there has some soy or milk added. I'm not kidding. Read the labels. So, our hands are tied in a lot of ways when it comes to offering a varied diet.

By the time they are near weaning off of the formula and have resolved their food allergies, their feeding patterns are pretty set. They aren't used to many types of food and have a pretty negative association with eating. Period. With Lexi we just kept her on the bottle and let time take it's course. And, we were pretty lenient about where and when she ate. We were so exhausted from fighting about food, we gave in. Well, that created some habits that we didn't like. With Addie, whether she eats or not, she sits at the table. And we only eat at the table. We eat as a family. Lexi has really come around and actually looks forward to sitting down together. (I know, from the previous post, you'd never know it. But, those moments really are few and far between.)

It's nearing time for Addie to wean from the bottle. But, because she doesn't eat solids, she gets almost zero nutrition from regular food. All of it comes from the formula. I mentioned her gagging when she touches strange food to our GI doc and once again, we're in therapy. Addie is officially on a "program". She gets 2 familiar foods at each meal accompanied by a new food. It must stay on the tray, even if she won't touch it, she's not allowed to throw it on the floor or set it on the table. We are to encourage her to touch the food, then smell it, then kiss it and if she's ok with that, maybe lick it. We have a "spit cup" so that she knows if she tries something and doesn't like it, she has an escape route. All of her food is to be in stick shape so that she has to touch it to eat it. When she's done eating, she has to throw her food in the trash so that she is forced to interact with it. All the while, we as parents, are to remain upbeat and positive and have eternal jazz hands so that eating is fun and everyone is happy and we're so excited to have a spit cup at our table!!!!

Can I interject here that at our first appointment, the food lady simply touched Addie's hand with a club cracker and Addie broke down into sobs? Hiccuping, slobbering, scared out of her gourd sobs. She was terrified. She sat on my big, 8 month pregnant belly for 10 minutes sniffing and blubbering because of the assault. We have a ways to go to say the least. But, we're holding tight to the program.

I know it seems ridiculous. Or that I might have created this monster somehow because of the way I feed my kids. If you just let them get hungry enough, they'll eat. Right? Right. Let me assure you, I would like nothing more than to have a baby who wants to eat every 2 hours as a newborn, who can have regular formula or even breast milk, who at 4 months will eat rice cereal, a kid who actually reaches for what we're eating (you know, my kids have never, ever tried to reach for food), and plays with their food. They just don't yearn for food.

I will say, dealing with feeding aversions is one of the most defeating issues to encounter. A person cannot force another to eat. When your baby is starving, but refuses to eat, it is crushing. As a parent, you know what will soothe their little tummy. But, the misery that comes with eating, for those little ones, is so awful they would rather refuse food completely. Sleep goes out the window. Screaming ensues. Stress levels rise. Doctor visits increase. You feel totally helpless. And, every 3 hours, you have to try again. After all, you can't just let a baby starve. You keep trying. The baby keeps fighting. The circle goes round and round. It's draining, exhausting, and horrible. It's not a very common thing, really, so trying to get someone to understand exactly what it is like is so difficult. I would try and explain what was going on with Lexi to my friends and they would look at me like I was crazy. In fact, I didn't even realize this issue had a name until Addie came along and my next door neighbor and NICU nurse mentioned that we would likely deal with a feeding aversion because of how long it was taking to resolve Addie's reflux. Only then did I realize I wasn't cuckoo.

On a good note, Addie's bottle is now mostly milk and she is tolerating it well. Soon, we'll get to offer her a cup and get off of the bottle completely. Of course, this has to happen in conjunction with her eating more solid foods so she won't be nutritionally deficient. At some point, she'll eat. I know this because Lexi is a fairly normal eater and she was just the same, if not worse. Addie has actually been trying some of my food. Of her own volition. I suppose we'll look back in a few years and have forgotten much of this trial. Boy, do I look forward to those days! For now, we just "keep calm and carry on".


Anonymous said...

Traci, I believe that I cannot say how much I feel for you. I may not understand it, but my heart breaks for you. I know it may not sound comforting, but I have always been told that Heavenly Father does not give us anything that we cannot overcome. I have been through a lot of trials, personally in the last 2 years and the only thing that has kept me going is remembering that. I am praying for you and Allen that this next baby will be healthy and be able to eat on a regular schedule, maybe even breastfeed. :-)

rl_riddle said...

Wow Traci. Even though I've known about Addie (& Lexi) with these problems, this post gave me so much more understanding for what you guys go through. The day to day stress/worry of it all is so tedious and tiring. Those who don't/won't understand just don't matter. I'm glad the ultimate result/blessing of it all is that they do eventually eat and thrive!
Love and thanks for the wonderful mom you are!

Brad and Lisa said...

Kally read this post and called me to say I needed to read it because she knows that we too suffer from these issues. I can honestly say I understand exactly what you're going through! Most people (understandably) don't get how difficult and frustrating this is. Eden definitely has feeding issues and everything you've written sounds all too familiar. We too see lots of specialists to try to help, but it appears as though only time will help this problem. At a good feeding, she will only take an ounce of milk from her bottle, and she does horribly when we try to give her any kind of baby food. But every three hours, day after day we try again. What else can we do with these little babies?! I know how hard this is, and fortunately we don't have any allergies like your girls do so my heart goes out to you with that added frustration. Hang in there... at least that's what they tell me. :)

marti said...

did i ever tell you you're my hero? seriously.

MoDLin said...

No, you're not alone, but it certainly can feel that way. Dealing with food aversion is very difficult. I was reading conversations today about this very topic at the March of Dimes community for parents of preemies called Share Your Story. It's a very supportive group. You might want to visit it: http://www.shareyourstory.org/

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What started as a way to communicate with far away friends and family has become a place for this horse trainer/HR manager turned stay at home mom of 3 girls to hold on to a bit of her own identity. It's my take on the ins and outs, the ups and downs, the thoughts and feelings, the mistakes and triumphs of this family as we bumble our way to eternity.