Summer Feasts

We've had an exciting week in Seattle -- Markus was back in town!  We all welcomed our favorite German feeding specialist and Heath was thrilled to reunite with his old friend.

This time, Markus was here to see Matthew, the little one I mentioned last week.   As we all hoped and prayed he would, Matthew became an eater!!   He started out feeling great, munching and playing with food happily during his first hungry days, but his journey from A to B wasn't a straight one.  Like Heath, he became glum and withdrawn on Days 4 and 5 of the intensive phase and began refusing almost everything as he lingered on the threshold of his big decision.  We visited for dinner on Day 5 and our hearts went out to Matthew, who alternated between watching us eat with a look of great skepticism, sitting with his eyes closed, and eating a micro-bite or two himself.   That night, Matthew received 200 mls of supplementary nutrition via tube and woke up perky and ready to face the situation anew.  On Day 6, he sat down at picnic and ate!!  His mom Judy shared this update yesterday....

"Matthew has been eating very well since Wednesday.  Right now he's interested in trying everything and his favorites are avocado, corn tings, veggie straws, cream cheese (he licks it off the cracker), apple, and milk.  Since Wednesday he has tried clams, pizza, chicken salad, slim jims, and oreo cookies.  Yes, it has truly been an amazing week.  I sometimes catch myself staring at him when he eats, in amazement that he's not gagging but loving the food!!  He actually loves his highchair now and wants to sit, sleep and eat in it all the time!"

 

"Emotionally, he is still trying to figure things out.  He woke up quite irritated the last few days, which Markus said is quite common because he's adjusting to his new oral eating self.  He has been more attached to me than usual and doesn't sleep well at night but I'm hoping that this will improve in time."

 

"Matthew was on 5 days of pretty much zero calories (except for some prune juice and water at night and naptime).  Monday was the most difficult day of all where he was very tired and refusing food almost all day.  We decided that Matthew needed a bit of nutrition overnight and after that, he started to turn the corner on Tuesday.  He's still getting some water and prune juice through his tube at night but last night I stopped giving him the extra nutrition and he woke up super hungry this morning."

"Last night I called my mother and we had a good cry over the phone because I can actually say that Matthew is an eater!"

 

We are so overjoyed for Matthew and his brave family!  Thankfully, he never reached 10% weight loss (Heath dropped 12%) and at the rate he is going, he stands to regain well.  Judy was a champion hostess, putting on play picnics every day for kids in the community who came to support Matthew or to see Markus.  Our online friend Sylvia, from Tube Fed Kids Deserve to Eat, brought her daughter Sarah all the way from Indiana to consult with Markus, and I hope to share what they learned in my next post!  Matthew and Sarah made a great eating team and their play sessions with food were not only therapeutic but hilarious.

Markus won't be returning to the U.S. for the next year and has a busy research schedule, but we are hoping that when he returns he will do some training in addition to more weaning!

Heath has been having a ball hosting his own little parties for his animal friends.   More tea, Mr. Owl?  You look a bit peaked.

Oh stop, Mr. Bear!  Your witty repartee is too much!

 

All this fun with imaginary cooking, stirring, serving, sipping and munching got me thinking.  There doesn't have to be food to be fun!  I've been chatting a bit with some of the moms over at Babycenter's online tube-feeding group where many of the babies and kids have tubes that are medically necessary, lifesavers in fact!  Some of the kids have metabolic issues that will prohibit or limit oral eating, and some aren't ready to eat because body and soul are recovering from big stuff.  Some swallows aren't strong enough to prevent aspiration.  All this made me reflect on our early days with a tube and how I was desperate to help Heath learn to eat.  Looking back, I wish I had relaxed.  He wasn't ready, and there wasn't a heck of a lot we could do about that!  What we could do was perhaps more important than I realized.   Our friend and OT Jeni taught us non-invasive ways to introduce fun, pleasure, and trust to Heath's mouth, which had recently experienced a lot of tough stuff in the hospital.

There he is grinning at two months as he enjoys having his cheeks brushed gently. 

And there he is getting one of his first tastes, a halved, frozen grape on his lips and tongue.  Whenever he signaled, "Enough, guys!" we stopped the game and went back to something more fun.

This was Heath's first "meal" -- tastes we were able to give him with a pacifier before his swallow was safe.  He didn't object and even smiled a bit!  I remember being so happy that day.  When he felt nauseous or had pain from reflux, these games weren't as enjoyable for him.

Jeni, and later Gay, taught us ways to build a relationship of trust and fun with Heath around his mouth and food that paid off as the months went by and he eventually started grabbing for french fries.  The rest is history!

From those kids for whom the tube is a positive, lifesaving choice (Heath was one of 'em), I've learned there can still be yuks around the dinner table, trust and togetherness, and maybe even a few things that are safe to taste and enjoy.  We are all on a different journey!

Speaking of journeys, Heath is learning to conduct trains like a pro!  Many thanks to the Johns family, who packed up their well-loved trains and tracks and sent them from Richmond, Virginia for Heath to enjoy.

Choo choo!!!!  Have a great weekend everyone!

Comments

[daria]

Oh my goodness....that tea party is awesome!

And YIPPEE for Matthew and Judy!

[MELISSA AKA EQUIDAE]

HE LOVES ALL THIS PRETEND PLAY :) GREG IS MORE THE HANDS ON TYPE OUTDOORS....HE LOVES THAT MUCH MORE SO FAR

[Air Yeezy]

My life is not long! But I will not let my life boring! I will try to do something I love doing things for their own pleasure! Make it a rich and meaningful

[Emily]

Christopher says Heath can come over and play with all his trains and tracks whenever he wants!! :) ♥ you guys!

[Amber]

I love Markus and I've never even met the guy.

HOOOOOORAAAAAY for Matthew. Amazing, amazing progress. I'm in awe yet again.

Heath is so cute and looks so healthy even way back when during tougher times. You've done such an amazing job supporting Heath's spirit, body and personhood throughout this ride. He's fabulous.

I agree with all your thoughtful comments on people's different tube-feeding journeys. Well put!