Friday, February 10, 2017


One year ago today, we pulled Helena's feeding tube and engaged in what I lovingly refer to as "starvation therapy". She was losing weight, she was puking up more formula than she was keeping down and she was just miserable over all. She would gag if we put a bottle in her mouth and scream and cry when she saw us holding one. 

So one year ago today, under the guidance of her cardiac nurse and her pediatrician we pulled out her NG tube and decided it was time to sink or swim. Either she'd figure out that eating is GOOD or she'd still refuse to eat orally and we'd have to explore getting a G-Tube as a more permanent feeding option. We gave her nothing via her tube, she only consumed what she took orally. We hoped that because her oral aversion was psychological, her hunger would help her overcome it. 

Note the dramatic weight loss, and initial refusal to eat

For weeks I kept track of every calorie she consumed, and weighed her daily until we felt that she had overcome her oral aversion and was gaining and thriving. I have pages and pages of notes like this. For weeks I texted all day with her cardiac nurse who was leading us through this, detailing every bit of food and drop of formula that Helena consumed. For weeks we "made up" her missing calories via a feeding pump all night. Do you know how many calories 1/2 a tub of baby peaches has in it? I do.

There's a cabinet in our kitchen that held all Helena's medical supplies (or at least the downstairs supplies). Yesterday, I sat on the floor and cleaned it out. I pulled out sterile lube, NG tubes, medical tape, stethoscopes and lots of other stuff that we don't use anymore. 

Luckily, there are a bajillion uses for medical tape.

I sat on the floor and just cried remembering how much we struggled, how much we cried, how much we worried and how much we begged Helena to just eat. And I cried thinking about how well she's doing now - she's trying to steal food from anyone she can and was upset that I wouldn't give her a second cookie before her dinner yesterday (I may or may not indulge her a bit too much when she asks for food :) ). She's just come so far. It's been such a long road to get to where we are today. It's hard to believe the journey we went on, and survived. 

As if on cue, Helena came over to inspect the box. She picked up her NG tube and held it up to me, of course only increasing my tears. 

"What's this? My arch nemesis? Oh, ok."

She has lingering effects from the tube and her hospital stays and medical experiences, but doesn't remember it. She freaks out if I try to touch her nose, she hates being restrained, she's terrified of anything even remotely medical looking (the carpet cleaning with its hoses and tanks scares her so much) and she gets super anxious in new places with new people. But that's all understandable, and we can help her with that. 

We don't know when her valve will need to be replaced. We don't know if we'll ever need all those medical supplies again. But for now, and for the immediate future we have an empty cabinet.

Well, except for that candle. Who knows how long that's been in there!

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