When They Call Your Child Failure To Thrive

I sat there on Sunday night breaking a pink-frosted, sugar cookie into small, bite-sized pieces, praying he would eat it. I added up the calories in my head. One bottle with milk and formula, two smoothies, another bottle with milk and formula…that was it. It had been a bad food day.

It was dinnertime and that was literally all my son had eaten that day.

Next to the pieces of the sugar cookie was a juice box, filled with beautiful sugar calories that any other kid would guzzle in a heartbeat. Not my kid. He wouldn’t touch it. If I tried to give it to him he would shake his head and turn away.

Two more sleeps until we see the nutritionist, I thought. Two more sleeps. I was waiting for this appointment the way my daughter waits for Christmas or her birthday. Apparently I was also counting down in the same way too.

In early March my son was officially labeled as Failure To Thrive and I have been a mess ever since when it comes to his eating habits. Really I had been a mess before the diagnosis, but having that label made it worse for me.

“It’s such a harsh-sounding diagnosis,” a friend had said to me as I was pouring my heart out over text messaging and trying to silently ugly cry so I didn’t wake the kids.

It was a harsh diagnosis. It is a harsh diagnosis. The words themselves make it seem like I have somehow failed as a parent.

But what does it really mean?

According to kidshealth.org it’s not a disorder or disease, but a sign that your child is undernourished. Gee, thanks. Next source, please.

John Hopkins defines it as, “decelerated or arrested physical growth (height and weight measurements fall below the third or fifth percentile, or a downward change in growth across two major growth percentiles) and is associated with abnormal growth and development. The reason for failure to thrive is inadequate nutrition.”

My son is about 21-months old and he is small for his age. His weight has gone up and down but he has never been above 24 pounds. His height, thank God, is finally on the move. He has grown two inches in the last three months. But the weight…it’s like two steps forward and four steps back.

He didn’t start out this way. He was born at 39 weeks and 2 days old at 8 lbs. 8 oz. Not a small baby by any means, but shortly after he slipped to about the 23^rd/25^th percentile and stayed there. That became his normal and his growth curve.

Honestly, I think the problem started with me. I breastfed and it was always a struggle for me to produce. He ate every two hours for a very long time. Part of me thinks he just got used to eating in little spurts.

But, looking back, each new feeding experience has been a rough one with him. He didn’t do well with baby food for a long time. I tried whole foods and he did better, and he did switch over to cows milk just fine at 1-year-old.

I figured he wasn’t a huge eater. He was pickier about foods than my daughter had been but he ate things like hummus on bread, bananas, blueberries, grapes and I could get some pouches into him too so he had a decent mix of veggies.

However the issues really accelerated for us at the end of November when he was diagnosed with pneumonia. That was the beginning of months of illnesses that turned into a journey of doctors’ appointments, food diaries and constant calorie counting.

In December, the day after Christmas, we took him to the ER. He had had a horrible cough again and had been throwing up – sometimes randomly, sometimes with coughing. He was diagnosed with pneumonia again. I also had the stomach flu so I’m guessing he has a touch of that too. We were admitted.

He hadn’t gained any weight since that November appointment. With the throwing up, I knew his weight would be lower.

After 24 hours we were released and he seemed to be a happier boy. He was even hungry. Antibiotics did his little body some good and they put him on iron supplements. He isn’t a big meat eater so I wasn’t surprised when they said he was deficient.

A few weeks later we were back at the hospital having his adenoids removed and his second set of tubes placed. He had constant ear infections since he was two weeks old and had been on a lot of antibiotics in his short life. His first set up tubes had been placed in March of 2016, but those fell out by October.

In the short window of time between the tubes falling out and having surgery for the second set he had already had 3 double ear infections and the two rounds of pneumonia. The ENT swore it would help to have his adenoids removed too and said when they see upper respiratory infections in kids it’s often a sign adenoids need to be removed.

About two weeks after that we met with the food team – a team of 6 doctors and specialist that evaluated him (and me) at once and then determined a path forward. At this point, he was eating more than ever before so I thought it had been sort of overkill that I scheduled this appointment. Maybe he was finally getting “back to normal” now that we were passed the ear, nose and throat issues?

I was happy for the extra help though, especially since they recommended food therapy with OT and had him tested for Celiac Disease (negative). He still wasn’t eating any sort of meat.

But that was the end of my semi-calm demeanor over this.

That weekend he was sick again and I took him to the ER again at 4 a.m. He wasn’t breathing right. It was fast, ragged. Similar to the way it sounded when he had pneumonia.

When we arrived he had a fever of 104 and threw up on me. They administered Motrin, did a chest x-ray and gave him a breathing treatment and antibiotics. We were admitted again. By mid-morning his fever had broken but they put him on oxygen because his breathing was still labored.

This time we were diagnosed with RSV and I was a complete mess. From that moment on, I became a ball of anxiety over his health and eating habits.

“What is wrong with my kid! Why can’t anyone make him better,” I was saying to myself over and over.

However, after 24 hours we were allowed to go home again and my son had made a stunning recovery. We were told to follow-up with a pulmonologist, which we FINALLY saw last week.

While waiting to see him our pediatrician sent us to the allergist and immunologist. That’s when I received the Failure To Thrive diagnosis and they let me know he was in the 5^th percentile for weight and height.

After multiple visits, testing him for environmental allergies, food allergies and immune disorders we discovered nothing.

“I think it’s just a food issue with him,” the allergist told me. However, he did want me to put him on a toddler formula and I started combining that with milk to up his calorie intake.

We’ve been to occupational therapy twice now. Our next appointment isn’t until the end of the month which annoys me because he is supposed to go every week. She has no availability though so we are on a waitlist.

From our first two appointments, these are the biggest tips I’ve received:

1. Wait 2.5 to 3 hours in between offering him food, this includes formula.
2. Work with him to focus his concentration when playing though touching him or corralling him into a small, more intimate space. Concentration on tasks will lead to concentration at the table.
3. Keep a food diary so you can really see what he is eating. This one has turned me into a crazy person. Before I thought he wasn’t eating much. Now I know he isn’t eating much.

At home we’ve done the following to try and help him focus on eating:

1. Clear the table of anything but food.

Our kitchen and living room are one room so often the kitchen table becomes a place for homework and coloring. Now we make sure everything is off of it at all meal times instead of in a pile at the end.

2. Give my son a designated seat.

Basically, I make him sit in his highchair for meals. He thinks he is such a big boy and wants to do everything my daughter does, like sit in adult chairs. Sometimes it works and sometimes it doesn’t, but I’ve tried to be more consistent about his place at the table. I can usually get him to eat some lunch during the day now on a weekday.

3. Limit my daughter’s interaction with him at meals.

This one is tough. So tough. She loves to talk to him, to touch him, to wiggle out of her seat, to play with a toy at the table, etc. Recently she has started trying to feed him. The problem is that she is a huge distraction and he is easily distracted. He would rather play than eat. If she offers some way to play, food time is over.

4. Make sure food is only eaten at the table.

This is a new rule for everyone. My son likes to snack as he roams around the house, but according to the food team that’s a no no. We now all eat everything, even snacks and bedtime treats, at the table.

At our last appointment I explained that I was really worried about his nutrition. My son now knows the color of his favorite veggie and fruit pouches. He refuses to eat the others, which are basically the green ones.

Not to mention my pediatrician’s office is now telling me to take him off the toddler formula because it’s “going in the wrong direction.” They said he should be eating less milk, more food and no formula. I’m so hesitant to do this because since he has been on it I’ve seen the most growth in his height. (And to complicate it more this is the PA telling me this because the pediatrician is now out on maternity leave.)

Luckily, our occupational therapist recommended this follow-up with the food team’s nutritionist. She is the one I’m waiting to see. I’m hoping she will give me some direction on what to do. Right now I feel like I have all these people telling me what’s right, but not a lot of people telling me how to make things better.

Aside from our appointment with the nutritionist, I also have to schedule three tests that the pulmonologist suggested and then follow-up with him in June. I’m on a waitlist for an earlier appointment. This has become the story of my life.

While I’m waiting for all these things over here, I just keep tearing cookies and bread into small pieces to attempt to get some sort of substantial calories into my son. Since our first visit with the food team his eating has only gotten worse. He won’t eat any fresh fruit anymore. Strawberries, blueberries, grapes and bananas are all out. He still won’t eat any vegetables – pouch or whole – and doesn’t eat any meat.

I never thought that I would count calories for anyone but myself. You just don’t think of something like this happening when you have an otherwise healthy kid.

Every day now I pray it’s a good food day. Good and bad food days mean something totally different when your child is Failure To Thrive. My days are now broken down to simple math equations and prayers.

Has he eaten enough to maintain his weight today? Has he eaten enough to help him gain weight? Do I need to get more calories in him? Please God let him eat something for me today – anything.

To read more kid life experiences – the good and the bad – click here.