Foodie Grrrrls!!

Wooooot!!!  Zoe and Caroline have joined the club.  I'm so excited to share great news of their heroic journeys from Tubeland to Foodland!

Zoe and Caroline are two Seattle sweeties whose moms, Shannin and Leslie respectively, became friends of ours through the tube feeding underground.  We've played, picnicked, kvetched and commiserated together, and they supported Heath during his transformation into an eater this spring.  Now we are overjoyed to see Zoe and Caroline leaving the tube behind!

Leslie and Shannin both spent lots of time conducting research, educating their medical specialists, and developing careful plans to wean their daughters from gastrostomy tubes that were no longer medically necessary.  Feeding therapy had not resulted in an eating breakthrough and it was clear the girls' history of overwhelming medical procedures had a lot to do with their aversion to eating, coupled with the fact that their bellies were full.  It was time to put power back in the girls' hands and find out whether hunger would awaken their natural instinct to eat.

Karen Quinn-Shea, a gifted occupational therapist at Seattle Children's Hospital who has helped over 40 children wean from tubes, suggested calorie reduction plans that would increase hunger but would not bring the girls all the way down to zero calories.  Hydration would be maintained throughout.  This type of wean is more often practiced in the US, whereas in Germany and Austria it is common to drop tube feeds and hydration entirely for a time.  The European method works more quickly (it was developed initally for use in clinics) and sends the body a profound and unambiguous signal, but the slow and steady method can work well for children whose instinct to eat is evident.   The girls started in early June and it took several weeks, but today both are full-on eaters and loving it!!

That little ray of sunshine is Zoe, 23 months old.  She has an advanced degree from the preschool of hard knocks, but it hasn't dimmed her exuberant spirit one iota.  She was born with a congenital diaphragmatic hernia (CHD) which required complex surgery to move some of her internal organs from her chest cavity back into her abdominal cavity.  A long stay in the NICU and lots of help from breathing machines meant that her early oral experiences were not all blissful.  She left the hospital on a feeding tube with no interest in eating. 

"Zoe was adamant about not wanting to touch food," said Shannin.  She refused emphatically whenever it was offered.  "She was so nauseous and had so many medical issues going on -- there were bigger battles to fight," said Shannin.  As Zoe's reflux calmed and her vomiting became less frequent,  she began to show curiosity during family mealtimes and would cautiously play with or suck a french fry, almost as if it was a toy. "We didn't want her to have bad associations with food so we never pressured her,"  said Shannin. 

At this point, Shannin and her husband Jason decided to try feeding therapy at Holly Ridge Center, which has a non-invasive approach to letting kids find their way around food.  During structured play picnics with six other children, Zoe became more comfortable seeing and smelling food in a safe, fun environment.  No one put a spoon in her mouth or forced her when she signaled, "No" or "I'm not ready."  Zoe began to enjoy food-based play sessions, but because she wasn't hungry, she usually stopped short of tasting.   "Therapy was really helpful in terms of sensory experience with food, but we could have continued it forever if we hadn't reduced her calories." 

Here is Zoe, skeptically-yet-intently checking out Heath at Baby Picnic at the beginning of her wean.  She was finally feeling hungry, and just four days away from her eating breakthrough...

The next day with her therapist, Zoe pretended to feed a doll snacks via mouth instead of via tummy, as she usually did.  On Day 12 of the wean she took a good hard look at some Cheerios and began to eat them, one by one.  Soon she was stuffing them in her mouth by the handful!   The dam had broken!!  What would she eat next?

Sunflower seed butter!!   Zoe gobbled this nutritious and calorie-rich food by the tablespoonful, demolishing three jars in two weeks and packing on nearly an ounce a day in weight.  Next she ate graham crackers, Nutella, pop tarts, goldfish crackers, fig newtons, and bananas.  She would taste nearly anything.  Tortillas with beans and guacamole.  Pho noodles and a bite of eggroll.  She was off and running and hasn't stopped since.

Zoe's weight dropped from a pre-wean weight of 25 pounds to 22 pounds 9 ounces about ten days into the wean.  Once she started eating, she gained impressively and was 23 pounds 13 ounces last time I checked.  Her tube feeds dropped 75% from their original level.  During the wean she got 250 mls. of blenderized food at night via tube, which has now dropped to 180 mls.,  and about 300 mls. of water throughout the day to keep her hydrated.  After Zoe's two-year weight check, Shannin hopes to stop the night feed altogether.  Zoe is drinking a few ounces a day now, which is wonderful progress!

Shannin wrote in her blog, "It is an amazing, crazy thing to have a child that eats!  Every day Jason and I are in awe watching her shovel food in and smile while she does it.  It is almost as if she doesn't remember not eating -- she loves it!!  To make things even better, Zoe no longer vomits at all!....It feels like freedom -- for both Zoe and us.  I can't even imagine how much better she feels.... Hopefully she never remembers any of this.... It feels like we have turned a huge corner in our lives and like a huge weight has been lifted.  Zoe couldn't be more amazing,  she continues to stun us every day with her strength and perseverance.  It has all happened so fast, I don't think it has quite sunk in yet.  We are one month away from Zoe turning 2 years old -- Unbelievable!  I remember when two days seemed like a huge deal.  Miracles happen -- Zoe's proof."

Zoe is really getting back to her old self -- weaning is psychologically stressful and can make kids needy and discombobulated.  She was "pretty much a train wreck there for awhile," says Shannin.  "She just wanted to read books for a good month or so.  She didn't play with toys.  She's been back to playing for two or three weeks now and has been really happy."  It didn't help that Zoe began cutting all her eye teeth and two molars at once after she began eating.  (This happened to Heath too -- the mouth says 'Hey, we need choppers, STAT!")  Zoe is back to babbling, playing, crawling and cruising in between eating turkey and cheese sandwiches, quesadillas from the drive-through, string cheese, pizza, scrambled eggs with heavy cream,  french toast, whole cupcakes, and whatever is on the kids' menu when the family goes out.  Which is easy to do, since Zoe doesn't vomit anymore.  Ever.    

Life is becoming so ordinary, Shannin is returning to her former passion for the first time since Zoe's birth: costume design!  A former professional costumer in L.A., Shannin will oufit an army of Von Trapps for the Sound of Music  on Bainbridge Island this winter!   "We are just being a normal family," she said, "which we've never been able to do.  It's very special to be at that point."  

Because she is still adding a range of healthy foods to her diet, Zoe continues to picnic with her friends at Holly Ridge, where she recently accomplished a first:  chewing and swallowing each of eight foods on her plate! 

Sweet Caroline too has become a triumphant eater!!!

A gentle soul with a precious, impish smile, Caroline was tube fed from eight weeks of age, when she contracted respiratory syncytial virus (RSV).  She was already struggling to eat due to a VSD, a hole the size of a quarter between the ventricles of her heart.  The added burden of a dangerous respiratory illness made her too weak to carry on eating.  An uncomfortable nasogastric feeding tube and other hospital traumas "put her over the edge" as Leslie says, and Caroline became 100% tube dependent. By the time she had recovered from surgery to repair her heart last summer (during which the hospital suffered a power outage! Thank goodness for backup generators....), all interest in food seemed to be gone. 

Perhaps because Caroline was nauseous and not hungry, she did not progress beyond food-refusal in feeding therapy, but in spring began to explore touching and tasting food "in secret" with her babysitter, Jillia, who employed a zero-pressure approach to playing with food.  Guided by Leslie, Jillia always asked Caroline's permission when offering food or engaging in games like face-painting with food.  If Caroline indicated, "No," then her wishes were respected.  Like Heath and his other tube-fed friends, Caroline was caught between two warring impulses -- self-protection and the urge to eat -- but with this gentle therapeutic approach she began to let down her guard and make progress in tasting.

When I met Leslie last fall, Caroline was vomiting up to 15 times daily, from reflux as well as tube-related discomfort.  Heath was vomiting up to 8 times a day.  Leslie and I were bleary-eyed, soldiering on in sweatpants and determined to find a way out of the tube-feeding trenches.  We soon learned how to add blenderized "real" food like vegetables and meat to the tube diet, which helped calm our kids' uncomfortable tummies.  Since then, we have laughed through the ups and downs and celebrated so many milestones.  During Heath's wean, Caroline's sweet, serene presence was a real gift at Baby Picnic.  She was already drinking tw0 or three ounces daily and tasting a variety of foods, so she was a fearless pioneer compared to the other kids! 

After watching Heath, Kai, and Rosie became eaters, Leslie knew she wanted to give Caroline a chance.  A speech-language pathologist herself, she did lots of research and thought hard about the best way for their family to approach a wean.  Caroline had endured so much, as had Leslie and her husband Mike.  If it was possible for Caroline to make her breakthrough without going to zero calories and dehydration, then they wanted to try that first.  Since Caroline was already an enthusiastic taster, a nudge might be all she needed.  Markus Wilken, the German psychologist who helped Heath, observed Caroline carefully at picnics and encouraged Leslie: "I think Caroline really wants to eat. She just needs to feel hungry."

With guidance and support from Karen Quinn-Shea, Leslie began gradually reducing Caroline's tube calories in early June.  As she wrote in her blog, "The first few days we skipped breakfast, the next few days we skipped breakfast and lunch. By day 7 and 8 Caroline was clearly hungry and the food that used to exit her mouth just as quickly as it went in, slowly started to linger in her mouth a little longer, and sure enough she eventually started swallowing! She ate yogurt, she ate waffles, and she ate cheese!  Now....two weeks later [June 22], she is slowly growing more confident in swallowing. She is drinking a lot of water, a little bit of milk, and eating a variety of foods, including cheese, tortillas, scrambled eggs, corn puffs, and macaroni and cheese." 

Caroline's therapy was to make eating as much fun as possible!  Leslie and Mike made up games to play in the highchair, kept the mood light, and taught her through smiles and laughter that eating is a hoot....not something scary.  They never pressured her to eat.  "Table manners and a balanced diet will come with time," wrote Leslie.

In mid-July, Caroline had a big setback.  She contracted an illness that brought three days of terrible vomitting and diarrhea and she stopped eating and drinking completely.  "I'm afraid to weigh her," wrote Leslie.  "Thank goodness we still had the G-tube."  Leslie gave Caroline Pedialyte via tube at night and over the next couple weeks she gradually regained lost weight and her previous enjoyment of food.

Now, Caroline is loving cheese quesadillas, pasta, mac 'n' cheese, waffles with peanut butter, bagels with cream cheese, bananas and lots of other goodies!!  I sometimes catch Leslie on her way home from the grocery store and get good ideas for things to try with Heath.  Caroline made the switch gradually over a few weeks while her tube feeds were decreased by 70%.  She continues to receive a few ounces of supplementation at night via tube, which will be reduced as she continues to gain weight.

How has becoming an eater changed things?  Over the past few months, I have seen Caroline blossom from a sweet yet self-protective girl into a more expansive version of herself -- happier, more humorous, expressive and playful!  Becoming an eater has really amplified these healthy changes.  From Leslie's point of view, "She is more confident, she finally has control over her body.  Her mood is better and I think that has to do with how she feels physically.  It's great to see her feeling good!"

Congratulations to Zoe and Caroline and their amazing familes.  It takes courage for anyone to leap into the unknown, much less a little one who has been through hell and high water and who does not have the capacity to tell us how she feels.  Watching a tube-dependent child with a profound medical history become an eater is a wondrous miracle  -- courage prevails, trauma resolves, and body and soul come into balance.  WAY TO GO, girls!!  You'll go far with that kind of spirit.

Comments

[olga]

i have CHILLS!!! awesooooome!!!! way to go mamas, girlies, and karen.

[Darcy]

I love to hear these stories! They are so encouraging. We begin a very gradual wean next week. Please keep the stories coming!