Feeding Challenges: “I’ve Got This” and Other Things I Once Believed

March 26, 2017 complex heart defect, developmental delays, early intervention, failure to thrive, feeding tube, feeding/swallowing therapy, malnourishment, March 2017 Feature - Feeding Challenges, Nutrition, oral aversion, paralyzed vocal chords, refusing food, surgery 4 Comments

Major cardiac defects? That’s a little more intimidating than we initially signed up for but nothing a good surgeon can’t fix. Plus I’m a nurse, I can handle the hard. God prepared me for this.

Poor oxygenation? That’ll correct itself once her heart is repaired.

Severe developmental delays? Of course she’s delayed, but look at those bright eyes. There’s no way there’s not something in there yearning to breakout. She just needs some TLC and a family to encourage her, she’ll be walking and talking and sitting on her own in no time.

Severely malnourished? Not a problem. I’ve got this.

Malnourishment was not something I thought another think about. Not to toot my own horn or anything, but I’m a darn good cook. My boys eat. They always have. They may not have the best manners or like everything I put in front of them but they will eat it, they know I will wait them out or reheat their leftovers for their breakfast if they give me a hard time.

I believe in vegetables, bacon, butter, and all good things in balance. Even on pizza night the boys eat a handful of spinach or carrots or whatever greenish item I provide before chowing down. They don’t have cereal every morning and chicken nuggets are only a thing at restaurants.

See, I’m pretty great right? I love to bake and eat and fattening people up is a specialty of mine. Toot toot.

The first time I held Lizzie, beyond the warm fuzzy feelings, I was shocked to feel how frail she was. I knew to expect small and blue, her oxygen saturations were in the 50% range on a good day. But she was skin and bones, her hands were constricted, and she was so weak. In all the pictures she had been bundled up so it was hard to tell how disproportionate she actually was.

The nanny let us know she would need to eat soon so I got out the snacks we came ready with. I handed her some Gerber puffs and a sippy cup of water. It was funny to see her finger the puffs, she had no clue what to do with them.

We got back to the hotel and made her bottle per the nanny’s instruction. I warmed up water and mixed the formula with a little rice cereal, even widened the hole in the nipple. She would not take it. I made the bottle a little warmer and the hole a little bigger, still nothing. The water ended up being straight from the electric teapot and the hole was as big around as a pencil eraser before she would touch it; and she would only let my husband feed her.

As those first few days progressed it dawned on me that she truly had only been given scalding hot bottles of formula, albeit mixed with congee and what not, but she never learned to suckle and what she consumed was tasteless.

Lizzie did not know how to eat. She watched curiously as we chewed and mimicked our mouth movements, it was totally foreign to her.

I utilized the hotel sewing kit and took in all of Lizzie’s six month-sized pants and skirts, everything I had packed fell right off of her. We took her to the checkup with the rest of our travel group, again we knew to expect a reaction from the medical staff based on her condition but for some reason seeing she weighed only 14 1/2 pounds at 2 1/2 years threw me off more than the 53% oxygenation reading.

Once we arrived stateside, Lizzie was taken straight to the Pediatric ICU for observation. The doctor took one look at the can of Chinese formula and advised we switch to Pediasure right away. Thus began our affair with canned corn syrup mixed with essential vitamins and minerals…

After being home for a couple weeks the plans for her heart repair were made. We were instructed to fatten her up any way we could and enjoy the bonding time. She began crawling, then cruising, then walking in no time. She said a few words like mama, baba, and bye-bye. She was already blowing everyone’s expectations out of the water.

I began adding coconut oil to her bottles and offered her baby foods and whatever we were eating without much luck. The plan was to hit her hard with feeding therapy after she recovered from her surgery; that should only have been about 3-4 weeks so there were no worries there. She gained five pounds in little over a month so I wasn’t too concerned.

(Remember my sweet skills?) this feeding thing would not be an issue.

Lizzie checked in to the hospital mid-September 2013 and didn’t come home until late January 2014. Two open heart surgeries later, she came home with a ventilator and with oxygen.

She came home highly addicted to pain medications and extremely immunodeficient.

She came home with paralyzed vocal chords from multiple ventilations and tubes crammed down her throat over several months. Even if she knew how to eat she couldn’t without the risk of aspiration.

She also came home with a feeding tube inserted into her belly.

The instructions “fatten her up the best you can” turned into “just keep her healthy the best you can.” Pediasure was her only source of measurable nutrition. Days turned to weeks and months turned to years and, while we had luck with fun foods like pudding and Nutella, nothing stuck.

No progress was made; standard feeding therapies weren’t cutting it.

While Lizzie’s feeding difficulties are extreme and have been greatly impacted by extreme situations, the root of her issues began where many adopted children started as well: she never learned the joy of eating.

There were no Saturday morning pancake breakfasts, no cute first spaghetti mess pictures, no nursing at their mother’s breast or being cuddled while taking a bottle. Often these kiddos come from a survival-of-the-fittest scenario. You eat or you don’t, and if you don’t there’s no second chance or bedtime snack. Going to bed hungry and hurting becomes the norm.

Add to that possible genetic disorders, health problems, developmental delays, sensory issues, attachment disorders, or any combination of the above and you’ve got a recipe for some serious feeding difficulties.

After a couple years of feeding therapy Lizzie became stagnant. The g-tube has been a lifesaver but also a crutch on which we became a little too dependent. The thought of sending Lizzie to an inpatient tube weaning program made me sick; eight weeks in an industrial setting where they force her to eat never felt right. Unfortunately, it looked like our only option.

Over the years I’ve received numerous pointers and have had multiple people tell me things like, “Oh, I have a picky eater, too…” or “Leave her with me for a week and I’ll have her eating in no time…” or “You know if she gets hungry enough she will eat…” And I would think to myself, “Oh gee thanks, why didn’t I think of that??”

At some point I realized I was once just like all the well-intending folks with such awesome advice, sort of like before you have kids and you say/think crazy things like, “My kid will never act like that,” while judgingly observing a toddler having a melt down and watching the frazzled mom cave.

What people don’t get is that she has been hungry. She has been so severely malnourished that she was near death. Being hungry wasn’t enough to make her eat then, and it would be over my momma-bear-dead-body that I ever let her think she had to go back to that place in her past again.

It’s not like she just didn’t feel like eating. She did not know how.

Of course some of what was happening was behavioral and comfortable, but certainly not the simple reasoning behind why my child would not eat. My “you’re gonna eat that or go to bed hungry” approach to mothering would not work on our little lady.

So many things became clear to me after we changed to feeding therapy with Spectrum Pediatrics. Lizzie’s new therapist developed a program around her needs, and when standard treatment didn’t work she altered the plan to fit Lizzie. She introduced me to a book called Love Me, Feed Me and drove home the idea that trust is key. Kids with pasts similar to Lizzie need to know that hunger is not something to be feared and their needs will be met in a loving way.

Spectrum offered us an opportunity to participate in their tube wean program as well. Their website states: The key to ending tube dependency is correcting each child’s relationship with food and as well as helping them recognize and respond to hunger. Being satiated, enjoying food, and enjoying mealtimes with family and peers are the natural reinforcers for learning to eat. We believe treating the whole child with respect and individualized care is essential to unlocking the drive to eat. Any child learning to eat should be doing so in the presence of hunger and in safe social settings and not under the stress of an unnatural clinical or institutional setting.

Umm, yes! This was exactly what I was trying to say and exactly the type of program I prayed would exist for my daughter. Up until this point, Lizzie never associated fulfillment with eating by mouth. She enjoyed the taste of things but had forgotten the concept of “If I’m hungry, I need to eat.” Just a few months ago, if Lizzie was hungry, she’d lift her shirt and point to her tube.

There are still many hurdles to jump and mountains to climb, but she has come so far. Lizzie has learned to love certain foods and she is no longer tube-dependent. She gets more calories, fats, and nutrients by mouth than she ever took by tube.

In December we were able to stop tube feeding all together. We’ve had to hide all the cheese in the garage fridge (she hates the garage) to keep her from raiding the cheese drawer and restock her allotments daily in the kitchen fridge (don’t worry, every single person in the house has been guilty of giving her extra because she is so stinking cute and irresistible). I spend a fortune on yogurt and if someone leaves the peanut butter in her reach you better believe she will be in it.

We are now to a place where she knows what to do to satisfy her hunger and she likes the way eating makes her feel. It is safe to introduce new foods and cut back on some of her favorites, just as one would for any baby learning to eat.

Unfortunately we discovered in late January (completely unrelated to the feeding therapy) that Lizzie’s heart is not doing well and needs repair. Her overworking heart is burning more calories than she can consume and she has begun losing weight quickly. It was decided best to start giving nightly supplemental tube feedings until she has the corrective cardiac surgery.

This initially felt like such a devastating set back. Just when we were making ground we had to put everything on pause. But, really, it is okay and I know it will be okay. She has continued to eat by mouth and no longer asks for tube feedings; in fact she seems annoyed by the ones we have to give her now.

After her surgery in April, we will hit the ground running again. She will have a healthy heart and will be recovering from a very different starting point than before. Once she is ready we will apply the same loving approach we did for the tube wean. We’ll continue to include her at family meals, we’ll feed her when she’s hungry, and we’ll say no when all she wants is chocolate pudding (or six pieces of string cheese) just like we would for any of our other kids.

We will sometimes lose patience and get frustrated with her and – in the next moment – be encouraged over the slightest interest shown in a new food. We (I) will stop letting new diagnoses, such as level 3 Autism, be an excuse to keep her (me) from doing hard things. We’ll take breaks and hang tight where we are, if need be, but we will not quit.

Rather than be frustrated by people staring at what seems to be a normal six year old child eating like an eight month old infant, we’ll keep doing our thing.

We will meet her wherever she is at the moment and celebrate how far she has come – and all she will achieve.

– guest post by Whitney

4 responses to “Feeding Challenges: “I’ve Got This” and Other Things I Once Believed”

  1. Andrea Olson says:

    Thanks for sharing, Whitney!

  2. Heather says:

    I’m so glad you wrote this. My son who was adopted at 1 year and 1 week of age will be 8 in August. We’re still going to feeding therapy and are only eating baby food and completely smooth yogurt. It’s a hard road, isn’t it?

  3. Alice says:

    It was lovely to read a bit more of your story, Whitney. Knowing you and Lizzy, and your guys, was one of the most momentous and memorable parts of my long nursing career. I love you guys and will never stop praying for you!

  4. Meg says:

    Good luck in April. I’ll be sending prayers and vibes of health and peace.

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