Stella’s tube wean

Below are links to all blog entries written during Stella’s tube weaning process. Looking back at them now, I see that I didn’t really capture how awful and scary it was (then again, the time BEFORE her tube, when she wouldn’t eat was just as bad). We’ve long since weathered this storm and I’m extremely thankful that we now have a happy, healthy daughter who loves to eat everything from ice cream to broccoli to fish to candy canes to macaroni and cheese to ice cream.

Background

Stella had a nasogastric feeding tube for a couple of months, beginning when she was just shy of three months old. At that point, I think she’d slept about two hours total in her life. Felt that way at least. Something was bothering her! And it put a real kink in R&R. The tube was placed because she had a severe feeding aversion and therefore stopped growing. To say that it was stressful to be unable to feed my own child is a vast understatement. Hello, seething insecurity and deep depression! Come on in!

The pain of silent reflux and an intolerance of my milk likely caused her to feel intense pain during and after eating, so she decided she’d rather not eat at all. Not unwise, really. She ate just enough to get by and by “get by”, I mean “stay alive.” She didn’t lose weight, but she didn’t gain it. And you know what? I thought it was my fault. That I just had to try harder to make breastfeeding work. So I basically spent all day trying to get her to eat, forcing and pressuring and cajoling. Which made it all ten times worse.

During a God-awful hospital stay, we went from breastfeeding to tube feeding of hypoallergenic formula. Not exactly what we had in mind. Terrifying, actually–at the time. I’ll just say it once: Formula ain’t the devil. It can be quite angelic, really. For the full story, read How Stella Went From the Boob to the Tube.

The type of tube dependency I’m referring to is a common, unintended side effect of lifesaving tube feeding (intended to be short-term), wherein despite resolution of the initial issues that caused eating refusal, the child loses the motivation and willingness to eat mainly due to a complete disconnect with hunger. Not that a lack of hunger ever stopped me from downing a whole package of Tim Tams, but babies seem to know better. Even after much excellent occupational therapy, Stella never took more than 50% of her daily intake orally when she had her tube. At some point, we had to take a leap of faith, take the tube out, and see if she would eat enough to thrive all on her own. We were lucky to have some real support–I know that for some parents, there’s none to be found–at least not nearby.

I want to share our story to perhaps help just a few other parents, especially because so many pediatricians do not acknowledge the condition of tube dependency, and simply expect the babies to magically “turn it around” and start eating, despite the tube’s interference. Above all, trust your instincts. You know your baby so much better than any doctor ever will. (Unless you yourself are a doctor, then all bets are off. Sorry, just trying to make you laugh because if you’re where we were, you could use one.)

Tube-free Stella: Day 1

Tube-free Stella: Day 2

Tube-free Stella: Day 3

Tube-free Stella: Days 4 and 5

Tube-free Stella: Days 6 and 7

Tube-free Stella: Day 8

Tube-free Stella: Days 9, 10 and 11

Japanese Proverb

Days 12 and 13: A big meltdown. A bigger milestone.

This just in

Day 14: Manic Monday

Day 15: Ugh.

A Little, Hopeful Update

Days 16 and 17: Sweet, sweet progress!

Days 18, 19 and 20: Stella turns a corner!

Days 22 through 25: Stella got her groove back

To learn about Stella’s tube-feeding days, and the build-up to the wean, read entries from December 2008.

Even after she was weaned and totally fine, I still worried a lot about her eating. It took much longer for me and Cody to move on than for Stella! See for yourself in entries from February 2009.

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