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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2 Responses to Stella’s tube wean

  1. Sasha says:

    Hi, reading your blog is really interesting.
    We have a 19 week old girl called Sofia. A happy, alert & thriving young girl despite all she’s been through.
    Since she was born, feeding was always stressful. She suffered major colic from birth to around 3/4 weeks until we put her on Comfot milk.
    At around 6-10 weeks she suffered severe constipation and would refuse feeds as well as.
    Hospital visit resulted in sepositary & nutramigen – no difference.
    Recently had a 3 night stay in hospital with a NG tube as feeding came to a point blank halt.
    Previous diagnosis of reflux, been on ranitidine which had a short term effect & then wore off, despite increase.
    Doctors put her on NEOCATE straight away, took a few days for her to take to bottle again & eventually had it taken out!
    First week was amazing, taking feeds awake and calmy, 4-8 oz quite happiliy !
    THEN
    Nightmare, just as I thought we had hit the nail on the head, the refususing of feeds started again, the ‘unhappy baby’ in feeding position (x100 different ones) vs ‘the happy baby’ when left to do her own thing!
    So cows milk intolerance it may be but food aversion is the case & I can honestly say I feel like a zombie. I am only 19 and quite mature for my age but nothing could prepare me for this. I feel quite naive to assume ‘baby > bottle’ approach. Now it can take me an hour or even 2 to get 2/3oz down her.
    Everybody has tried, and i mean everyone. I have a nack but even with the nack it doesn’t work!
    I’m pushing for an x ray & wouldn’t be surprised if she ends up with a NG tube again!
    Pray that things get better ! I’m going back to my nursing next March and terribley worried already! I can’t even leave her 1 night without being called back because she plays up. I feel like it’s all my fault, did I do something wrong in the beginning! UGH

  2. Chauncey Williams says:

    On Oct. 4th, 2016 our daughter Chacely was born. She spent the first 26 days of her life in the NICU and special care nurseries. Chacely has a very rare chromosome 17 micro deletion. There is no name for her syndrome and only 15 cases ever documented so we were faced with a lot of unknowns. One of her biggest challenges was that she wouldn’t eat. We were discharged home with an NG tube. Before each scheduled feeding we would offer her the bottle but it was a serious struggle trying to get her to eat just 20ml.
    By the time Chacely turned 3 months old I had developed some pretty bad depression and began questioning my relationship with God. I felt like the NG tube was consuming every moment of our lives and I absolutely despised that tube. What made matters worse is that each Tuesday I would personally replace her NG tube and it gave me the worst anxiety attacks. I’m pretty sure I cried more than her. I’m a nurse and have put in hundreds of NG tubes but it’s so much different when you have to do it to your own baby.
    I was at my wits end trying to figure out how to get rid of the NG when I stumbled across your blog. You gave me hope. Then Chacely surprised us in the wee hours one Saturday morning by eating 64ml. It’s the most she had ever drank from a bottle. Right then I knew she had the capability to eat, just not the feeling of hunger because of the tube. The following Wednesday Chacely had 2 feedings in a row where she ate 40ml each time. I decided after the second good feeding that Chacely was ready to ditch the tube and took it out.
    Day 1- she ate 11 oz
    Day 2- she ate 12 oz
    Days 3 & 4- she ate 13 oz
    Day 5- she ate 14 oz
    Day 6- she had her 4 month vaccinations but still ate 13 oz
    Day 7- she ate 10 oz and slept a lot from the vaccinations
    We are currently on day 8 and as of 9pm while writing this we are at 16.4 oz! She ate 3 oz just in one feeding! Her new best feeding ever!
    Your blog has been a God send to our family. Thank you so much for sharing Stella’s story and providing all the research articles. I know we aren’t out of the woods yet, but for the first time I can see the clearing ahead!

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