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Apollo Update {April 2014}

double aortic arch, vascular ring,  tube-fed, g-tube, tube fed  toddler
double aortic arch, vascular ring, tube-fed, g-tube, tube fed toddler

Apollo’s  tube-wean attempt is still neither a complete success nor a complete failure. He (and his body) have shown us that he is not yet ready to go without supplementation entirely (he was miserable the entire two weeks we tried it and steadily lost weight). But he’s taking in less  now that he was in December. The kicker? He now weighs what he did back in October, six months ago.double aortic arch, vascular ring,  tube-fed, g-tube, tube fed  toddler

The doctor wants him to gain half a pound a month. He won’t do that (yet) without supplementation. And with what we are giving him now (a total of 240 calories per night) he just maintains.

The pros of only giving him one can of formula:

* It only takes about 30 minutes to feed him. We do this after he’s asleep so it doesn’t interfere with his regular preschool life.

* His feeding is done by 9 or 10, so he has enough time to get hungry by morning.

The cons of only one can of formula:

* He is just barely maintaining his weight and the doctors want him to grow.double aortic arch, vascular ring,  tube-fed, g-tube, tube fed  toddlerAs a parent, this leaves us to decide between leaving him at this level, and trusting (hoping) his body/hunger will kick in. Or, supplementing a bit more so he grows, but possibly becomes/remains dependent on the tube.

Apollo’s situation is a bit different from other tube-fed kids. We are not weight obsessed. In fact, Apollo weighs precisely what Judah did at this age. The difference is, Judah didn’t depend on supplemental calories to maintain that weight, and more importantly, he didn’t have a damaged trachea. The doctors tell us we need Apollo (and his trachea) to grow and grow now. Babies tracheas are very soft and they harden as they grow. Apollo’s trachea is “c” shaped where his vascular ring was. Where it was literally crushed by the double aortic arch. We want Apollo’s trachea (airway) to be as big as possible, before it hardens permanently. The shape will never change, it is getting the biggest diameter possible that is the goal.

In other news, at nearly four years old, Apollo remains completely ambidextrous. It is pretty amazing to watch him color, draw or play on the iPad and switch between his right and left hands! Chuck and I have a theory…that just possibly Apollo is/was naturally left-handed, but switched to his right hand when his left subclavian artery was damaged during his first surgery. The artery has since be re-routed so it works again. But, it’s all speculation, and who knows, maybe he’ll choose a dominant hand at some point in the future.

And best of all, he’s been sleeping well and feeing good these days. He has had spurts of engergy where he is running and jumping around the house. These periods don’t last long, but are amazing to watch! Several times lately I’ve had him in stores and he has been running down the aisle and disappearing from me…he’s never had enough engergy to do that before, so I’ve never had to teach him proper store behavior. And he seems to be approaching his “terrible twos” a couple of years late. I think that for the first time he has the energy to act out, so he is.

I am feeling very hopeful as  year four approaches.

10 Comments

  1. Melpub

    This continues to be an amazing story–what I like to much is how you observe him and weigh whatever a doctor says against your own hunches. This seems the best and only way to go. Thrilled to hear that Apollo has so much energy!

  2. C Smith

    I hope things become clearer and easier for you to decide, nutrition-wise. It’s hard enough with a typical toddler’s eating habits! Curiously, my 4 yr. old is also ambidextrous. We’ve always thought that she was a natural lefty (2 of my 10 are) and when a surgery caused some nerve weakness on her left side she began using her right hand also.

  3. Tanya

    Hard decisions…I pray you will be clearly led! What I’m wondering, though, is this…with more calories is he sure to grow larger, or might he just put on more fat? Like you said, Judah was the same size at that age….my boys were all small early on, but grew like weeds in their teens. Our youngest is the smallest child in his class, but I have no doubt he will reach the same height as his adult brothers eventually…. right around 6 feet. If Apollo might do his growing later, then maybe it is best to continue feeding as is, in hopes that his own hunger will kick in, like you said? I am simply glad I am not the one who has to decide, but I have no doubt that you will make the right choice… God picked you to be Apollo’s parents for that very reason! 🙂

    • bakersdozenandapolloxiv

      We have discussed it a lot with his doctor and its okay for him to be small, but from a medical standpoint, not okay for him not to grow. Does that make sense? Its hard to know what to do when none of the doctors agree, and some insist that he needs to grow bigger NOW…

      • Tanya Redfield

        Yes that makes sense, but I just wonder can you make the body grow bigger, or will it just put on fat? In other words will he grow up, or just out? haha I wonder if they could give him growth hormones, but that seems risky and unnatural, too. Yes, it’s so much easier when all the “experts” agree. Go with your instincts! That’s usually God talking!

  4. Erin

    My son switched between right and left right up until he was nearly 6. Then he settled on right. Apparently it’s within the realms of normal.

  5. Annie Bailey

    My nephew has tof and his mom has found that tof kids tend to just be skinny… He’s tall but thin and rarely hungry and he’s not tube fed so I wonder if there is a trend with heart kids? What a tough spot to be in!

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