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Three Year Visit {Update on Apollo}

large family, heart defect, double aortic arch, vascular ring, g-tube, toddler g-tube

I love this photo Apollo…It reminds me of a poster from a 50’s horror flick or something.

Apollo had his three-year checkup the other day. Overall, Apollo is healthy, but his growth seems to have stalled again. He is 28 pounds even. Not a bad size, really (Judah was only 32 pounds at age five!) The problem is, once again, he isn’t growing ( I just checked his records from Texas and he was 27 pounds 1 ounce in October 2012). If there is anything Apollo’s doctors agree on it is that he needs to grow to take advantage of the short time when his trachea (airway) is still relatively soft. And keep in mind we are pumping 480 high fat calories a day into his g-tube.

Apollo’s lack of growth, combined with his current fatigue has resulted in his doctor wanting us to add in a third feeding and full can of formula a day. This new regimen would have give him a total of 720 calories through his tube a day. At his peak back in October he was taking in 760 calories a day through his tube. Adding in a third feeding and can of formula seems like such a step in the wrong direction. And yet, he is tired a lot lately, so Chuck and I had both been discussing the fact that perhaps he needs more calories…but somehow it sounds worse when coming from the doctor.

Especially when no doctor can give me a medical reason for his needing the g-tube anymore. On the other hand, even when his esophagus was compressed and looked like this the doctors completely missed it…large family, heart defect, double aortic arch, vascular ring, g-tube, toddler g-tubeThe other less than exciting new from the doctor is that Apollo has now developed a heart murmur. Our family doctor said this is a result of his surgery (and a quick internet search confirmed this does indeed happen sometimes after surgery). When I emailed his cardiologist and asked him his response was slightly more diplomatic simply saying, “a heart murmur sometimes develops over time”.

So for now are trying three cans of formula a day for a month, per doctor’s orders. In theory, he will have more energy and have grown a month from now. But darn it, did you know a bag of peanut M&M’s has 240 calories? If only he would eat more than three or four at a time we could just add a bag of those in instead of tube feeding. Just kidding.

Kind of.

But not really.

I know I have a handful of doctors, nurses and med student who read this blog…would any of you mind chiming in (either in the comments or by email) and give me your thoughts? On both the increased tube feeding and heart murmur?

It is so hard to know what to do with his feeding. Push eating orally more? Keep up our relaxed he’ll-learn-to-eat-eventually philosophy? Keep up with the current feeding therapy or take a break for the summer?

I am tentatively searching for a local doctor with more expertise on Apollo’s issues. Given the fact that he is his cardiologist’s only patient with a double aortic arch though, I’m not very hopeful. I just feel like nobody really knows what’s going on…and his specialists are a hundred miles away, which is okay, except they never actually  talk to each other. It feels like we are in no man’s land, once again trying to figure things out ourselves…

 

43 Comments

  1. C Smith

    I am only a nursing student so I can’t give medical advice, but I can tell you that lots of children have heart murmurs and it doesn’t always mean there’s a problem. Two of my own kids have a murmur. A murmur is just the doctor’s way of saying they hear an extra sound, it could have always been there and just gotton easier to hear as the heart grew. I do have some experience with feeding issues and I think you’re own the right track with Apollo. You do not want to make eating a battle, you can never win a fight over food. I think it can become a bad habit not to eat, I have seen many kids in the process of being weaned from tube feeding get irritated and protest, “but, I don’t eat food”. Adding in more calories seems like a good idea, Apollo is obviously not growing at a good rate. When kids don’t take in enough calories they stop feeling hungry after a while and then it becomes even harder to get them to eat. Maybe the extra formula will get him used to feeling nice and full and he will be more likely to eat meals. I hope things get better for you, the idea of him feeling tired because he’s can’t eat enough makes me so sad for you.

    • bakersdozenandapolloxiv

      Thank you for your response. I know that having a heart murmur in and of itself is not a problem, but as you can imagine, we are a big “jumpy” when it comes to Apollo and his health. It took us 18 months of insisting something was wrong to get his diagnosis…and even THEN his compressed esophagus was completely missed! We have been told repeatedly that he *doesn’t* have a heart murmur and his heart “sounds perfect”.

      Yes, we can’t win a battle with food and he has proven in the past he will not eat enough to maintain or grow. I would just like to know, why, why WHY can’t he gain weight and grow?

      • shawn Brockert-Kress

        Renee,
        I have a 13 year that doesn’t grow or gain weight. We STILL don’t have any answer as to why. I, like you, wonder everyday why can’t my child eat. After years of watching him not grow and trying to force him to eat, he now consumes most of his calories from a formula. Some days he eats zero food. I’ve come to a place where I’m just thankful he can get his nutrition from formula and finally grow. It is not ideal and it is hard to understand but I try to focus on this is the only way my child grows.

        • bakersdozenandapolloxiv

          Crazy. I have a Facebook and photographer friend who’s six year old son also doesn’t eat or gain weight. He made the switch months ago to just formula…you a kid is sick when he’d rather drink formula than eat…he just returned from the Mayo Clinic and they *still* don’t have answers. Best of luck to your child.

  2. Sarah Faulkner

    Just a thought, but given the seriousness of apollos health maybe you should just schedule to go to Texas for a check up and your concerns rather than waiting. From an outside perspective that the drs are not entirely sure and rather than say that, they come up with a response. Even if it doesnt make sence. Apollo is tired. He should not be. His body is trying to tell you something ~ again.

    I had a friend with a small treac (ok i cant spell that sorry ) and it only left her tired if she ran and couldnt get enough air. She grew just fine.

    I dont know because im not a dr but I dont have a high opinion of seattles medical unit from apollo and another friend.

    • bakersdozenandapolloxiv

      Thanks, Sarah. Right now we are going to try the one month of increased feeding. If his tiredness doesn’t go away, we will definitely be seeking another cause…in TX if we must.

  3. Sarah Faulkner

    I am commenting on my phone and we had a bit of a disagreement. I wanted to say good luck and I would be praying, but my screen wouldnt scroll down.

    So good luck and I will be praying. 🙂

  4. cecily spencer

    You need to know what is causing he heart murmur. Just saying one can develop isn’t telling you why. What is his breathing currently like? Could the fatigue be early stage heart failure? Don’t need to be an alarmist but you have always known there was a problem long before the doctors would really take it seriously. Maybe the good pulminologist that you liked would be a good place to start.

    • bakersdozenandapolloxiv

      His breathing is the best its ever been. Yes, if the increased calories don’t work we will take him to his pulmonologist.

  5. Kara

    Try increasing Apollo’s protein. Doctors always seem to want to increase fats, but some people need more than the usual protein to grow and the formulas are generally on the low side. I’m learning lots about the effects of protein on a childs growth as we get ready to put Owen on the ketogenic diet. Low growth is one of the side effects of a super high fat, but low protein diet.

  6. katrina

    Considering commercially made formula is extremely unhealthy for you (it has corn syrup and soy, an ANTInuterient in it), I am not surprised he’s not thriving on this “food.” The website I listed above and again here: http://www.westonaprice.org/faq/faq-homemade-baby-formula is a HEALTHY formula and has plenty of nutrition experience backing it up (I would eat this if I had a feeding tube). I’ve been going to a nutritionist lately and changing my diet and I’ve found it to be a HUGE benefit to my health. It’s difficult to have to prepare it yourself instead of buy it readymade, but it’s WORTH his health!!

    • bakersdozenandapolloxiv

      We have blended his food in the past. We hoped the formula would just be a supplement, which I don’t mind. If we have to tube feed him more and more we will probably begin to blend some of his foods.

  7. Clarissa

    Have you tried blending your own food to feed through his tube? I know of many that blend high calorie foods, and ‘healthy’ ones together. Such as blending beef, chicken, dark greens and the like until it is a consistancy that can be placed into the G-tube. It’s something I’d suggest you investigate as you can blend foods that have a much higher calorie count…at much cheaper.

    • bakersdozenandapolloxiv

      We did blending for months after his second heart surgery. He had chylothorax and was on a NO FAT diet. We may add in one blended meal a day, right now we plan to just do the trial month and see if that helps with fatigue and weight gain.

  8. Kristen

    When my 4th had feeding problems and wasn’t growing, we had him on a high fat diet (he had breastmilk, a homemade formula, and purees only at this point and was well below the charts at his appointments), but I also had to greatly increase his carbohydrate. Our feeding clinic said high fat only would cause him to stall or even lose, as they find sometimes with epileptic children on the ketogenic diet.

    I’m sure Apollo’s formula has carbs and fat in it, but since we made our own I paid careful attention to get enough of everything in there. He had fruit/butter/cream purees with almost every meal along with his other purees and homemade formula (and my milk).

    M&M’s sound right up that carb and calorie loaded alley 😉

    Just sharing a little of my experience, though coming from a different place (we’re still not sure why Galen wouldn’t eat, probably something sensory we very. very. slowly overcame. ). Best of luck as you get Apollo growing again.

  9. Brenda

    Renee,

    I agree with Sarah and Cecily, the symptom of fatigue combined with his growth plateau and the new murmur deserves another look by the specialists in Texas. It will be more efficient and effective to travel there than if would be to find someone new (and less experienced) and then try to catch them up to his unusual and complicated history. Obviously he needs more calories, youve got to do that one way or another…but the real question should be WHY does he need more calories? In other words, his caloric demand has increased and you need to find out why. Feeding him meets the demand but does not solve the problem. As always — go with your gut feeling, as a parent you receive inspiration that will guide you to do what’s best. Often the best thing is not what you want to do.

    Brenda in Spokane

    • bakersdozenandapolloxiv

      THANK YOU Brenda, I was really hoping you’d respond. You’ve been a great resource from the beginning. When you state it that way (fatigue, murmur, growth plateau) its sounds terrible. Like I said, I am comfortable doing the one month trial of increased calories, then re-evaluating. And really, I want to know *why* he needs so much caloric supplementation, no matter what else is going on.

  10. C

    I don’t know how far you are willing to travel, but

    Sean Levchuck, M.D.
    Director of Pediatrics/Pediatric Cardiology St francis Hospital, NY
    Department: Pediatrics
    Specialties:
    Pediatric Cardiology, Certified
    Primary Office Location:
    100 Port Washington Blvd.
    Roslyn, New York, 11576
    Phone: 516-365-3340
    Fax: 516-365-5512

    Is a very well known and amazing cardiologist that you might want to contact and send Apollo’s records to for a consult.

  11. Kat

    I am a nurse, but not with children or anything. Both commenters who have addressed the murmur are right… They are common and often no big deal, but with Apollo’s history you shouldn’t take anything for granted. It’s something that needs to be looked into and monitored, but there’s no reason to think that it won’t just stay stable and this won’t be the one time in his health history that something turns out to be no big deal. I’d say the biggest thing is to check it every couple months and make sure it isn’t changing (if you trust your PCP then they can monitor it.)

    The fatigue could be connected to the eating, but my gut is that it probably isn’t. The pattern that it has evolved with, as you’ve described it on here, doesn’t really make sense for that. (And again, that makes me think of the murmur, because heart problems = fatigue.) BUT it’s still worth trying it for a month, like you said.

    As for the tube, personally, I wouldn’t think twice about it. Hopefully you are past all of the major surgeries, but in terms of his lifespan you are still in the acute phase of this ordeal. Right now top priority goes to keeping him healthy and growing, whatever it takes. He can learn to eat when he’s ready. As you have made a point of on your other blog, tubies live normal, full lives (I’m thinking of the picture of the boys with EOE in their football uniforms feeding.) There’s a pretty low rate of complications with tubes and it’s a nice safeguard to have when you are so worried about his growth. There may not be a physical reason he doesn’t need to tube but just because something is “all in his head” doesn’t mean it isn’t real. So if it takes a few months or a couple years or even more to lose the tube… I don’t think it’s a very big deal. At least don’t worry about it until his health and growth have been GOOD for a solid 6 months or so.

    I hope some of that helps to reassure you. I know some of the worst part is just not knowing what it wrong. I hope the increased calories will help him 🙂

    • bakersdozenandapolloxiv

      Thank you for this comment, Kat. It was truly encouraging to me and it helps to hear that an echo may be a good idea.

  12. Jennifer S

    Renee – you have always been dead on with your gut feelings. I say go with them. I am a nurse, but certainly not qualified to give advice. Slender kids can have pseudo-murmurs because there is no fat to soften the heart sounds. But with his surgical history, it bears monitoring and perhaps even an echo to make sure.

    When you eat less over time, you want to eat less – a snowball. By upping his TF, you could help him have the energy to want to eat more. You were doing that feeding therapy group – are you still doing that? Another commenter said never to fight about food and I totally agree with her. Apollo has had too many frightening experiences when he ate – it might take until he is older and you can help him understand that he will get over that fear. Those aversions can be extremely slow to overcome.

    I also like the idea of making your own puree for his food – real food might do a better job of giving him a more balanced diet. It will require more watching of the tube and vigilant flushing to make sure food doesnt retain in teh tube…

    I feel like i am telling you things you already know… trust your heart Renee. God picked you for him and you have everything you need to be the best mom for him and get him the help that he needs.

    • bakersdozenandapolloxiv

      I don’t mind using formula when it is to “supplement” his diet. If we continue to have to tubefeed him three times a day, I may do blended food for one of those meals. We had to blend all of his tubefeeding meals when he had chylothorax, so it is no stranger to us.

  13. Christina

    Just a tubie Mom here, at 4.5 and 30 pounds two weeks ago this coming monday our rates were uped to 1200 Calories and a total of 1250 fluid/including the formula so for us it is 3 cans of 1.5 a day and 500 ish of water either orally or tube. We had a dietician sit down with us and set the plan in place (we have a high caloric need) and it’s finally working she has gained a kilo since the up. She had lost prior to the change. The dietician says anything she eats durring the day is a bonus but our feeds (except the water) is night time to allow her to eat normally through the day.

    • bakersdozenandapolloxiv

      At this point Apollo’s tube feeding is supposed to be a “supplement”…but with 720 calories through the tube, it seems the eating is becoming the supplement 🙁 Can I ask why your child is tubefed?

      • Christina

        Our’s is also Just a “supplement” K has a swallowing disorder caused by her Cerebal Palsey(twin B abrupted placenta), but could eat normally( sligthly thickened feeds and no mixed textures, but she wont she can’t manage more than a couple of bites. She was diagnosed with an “empty sella” which changed this summer to a pituitary tumor (benign) which should not cause issue’s but it has (and now we know why she gets tachycardia at times). She is also a kid who could take all calories orally and we tried and tried and tried before resorting to a tube.

        As for calorie amount it is the amount she needs per day if she can’t orally eat enough we “top up” at night which is 3 cans of 1.5 cal a night so she has to orally meet 150 and liquids on top of the pediasure is 500 ml’s if she can’t drink the water it is tubed durring the day (she gets a bit more depending on the heat) (were close to you on the big island in BC) so we have had a hot summer so far.

  14. Melissa

    I’m no physician but I believe in going with your gut and also in “if it ain’t broke, don’t fix it.” I have mitral valve prolapse, have never had a problem, and was diagnosed more than thirty years ago at a time when everyone with this condition (they are not really calling it a pathology anymore) was supposed to take massive doses of antibiotics before any surgery, including dental cleaning.
    And now they’re saying forget the antibiotics and I wish I hadn’t dumped all that medication into my system!
    The only thing I can suggest that may help (and will do no harm) is TCM–Traditional Chinese Medicine OR a respected homeopath. These are two different things, but they have in common NO SIDE EFFECTS. If it works, it’s great. If it doesn’t, you don’t have to worry about anything.

  15. vivian

    i don’t have any words of wisdom about Apollo’s health needs. i can only pray for God to lead you to someone who can help him and pray for his health issues to be resolved.
    xoxoxo to you all.

  16. Maddison

    I have a more common answer that no one really hit on. I want to suggest something in the middle of force feeding him human food(traumatic obviously) and letting him choose when and what he will eat. I see big negatives in both those options.

    So as I have never met Apollo and I don’t know anything about his personality I will suggest something that may or may not work. Many children can be bribed to eat things by giving them other foods they want. For example, “Claire eat 7 bites of chicken and you can have an ice cream sundae.” Apollo doesn’t sound like one of those kids lol.

    But in keeping with the bribery theme: Bribe food intake with rewards. Every child is different and you obviously don’t want your other children to be upset when they aren’t awarded for eating so do age appropriate rewards. Rewards can be- Time to do a favorite activity such as 10 minutes on the ipad or 10 minutes of a movie, stickers work great with some kids, small toys(that can still get pricey AND jealousy can be involved but you can rotate them out. Give him a brand new blue dinosaur and then when he goes to sleep hide it and bring it out a couple weeks later. Works great on young children), Time with mommy to read, time to play outside. And if some food works on bribing him use it.

    I work in special needs and we essentially bribe- but we don’t call it that all day long. Often times in special ed. you teach behaviors more than schoolwork. Rewarding behaviors you want is great. Disciplining the ones you don’t want is imperative as well. The key to the game of children is 100% praise. Children want to please, that is truly their game in life. I spent some time with the sweetest boy who was very food picky we taught him to accept textures and colors that weren’t always what he wanted. (He wanted orange foods mostly, autism is like that I suppose).

    Just thoughts for you to mull over.

    • bakersdozenandapolloxiv

      I understand this point of view, but we have worked hard to not attach any special meaning to food. Apollo can go hungry for long periods of time- he is not a kid who will get “hungry enough to eat”. He will slowly starve instead. I want him to learn to eat when he is hungry, not to gain an activity or prize. I *do* understand how this can work with some kids, though.

  17. Leah

    I think Kat was spot on. My hubby had a heart problem that before he had fixed, he couldn’t gain weight at all. With Apollo being so young and his extensive history, the heart might just be working too hard right now and taking the extra calories. Your gut feeling is probably right.
    Your little man is really going to appreciate you when he gets old enough to know just how much you have done for him. ((hugs)) to you and him.. May God bless you with wisdom and Apollo with health and steady growth.

  18. Kelly

    Some heart murmurs are very normal in skinny children, but it really depends on the type of murmur. Can you ask his doctor what type of murmur it is? (Diastolic or systolic, and s1, s2, s3 or s4). It’ll give you a starting point of researching it. Sometimes the murmur is just heard because they are skinny enough to hear it, really common in certain body types. I will say one of my attendings has told us anytime you hear a new heart murmur you must get a new EKG and echocardiogram to determine if it is something to be worried about. (this is physician dependent, but with everything you all have been through I’d be on the extreme cautious side of this.) Disclaimer, I’m a student and this is not intended as medical advice :D.

    Also right now his brain is developing and her really needs the fat to allow it to grow properly. If that requires formula I would certainly go with it, it isn’t worth the risk to him to not do the supplement. I know some people tube feed during the nights, would that be an option for him? I’m not sure how old you have to be for that to be considered, but it might make him feel hungry enough to eat during the daytime while still making sure he’s getting enough calories to properly grow and develop. (Obviously make sure you talk with his physician/dietician/whoever you normally discuss diet changes with).

    • bakersdozenandapolloxiv

      Interesting point, Kelly. I assume if it were just from his being skinny though, that it would have been heard before. Especially when he was at his skinniest. Good to know about having a new EKG an echo…we may request that.

      We have never tube fed him at night, because he is such a restless sleeper, thrashing around constantly.

  19. Jean

    Why does the doctor want him on only 720 calories a day? My grandson was three in June and his doctor said that active three year olds should consume 1500 calories a day and non active three year olds should consume 1000 calories. Maybe Apollo is tired because he’s not getting enough calories.

    This is very interesting and has lots of good suggestions. http://www.inspire.com/groups/preemie/discussion/my-3-year-old-still-g-tube-dependent/ The page is shaded blue to make you sign up but it’s still clear to read. The mothers have good suggestions on how they got their toddlers off the g tube.

    • bakersdozenandapolloxiv

      The doctor doesn’t only want him to have 720 calories, that is just the supplemental nutrition he gets through his g-tube. He eats orally. In fact, the doctors can’t tell us at this point *why* he even needs the g-tube! The surgeon in Texas hoped he’d be off if after six months (it has now been nine months).

      I will check out that link when I get a chance. Thank you.

      • Jean

        I found another link for you. This is someone’s blog and it has good info and links in it. I think she is from Seattle because she links to a Yahoo support group in Seattle for parents of children with feeding issues. http://www.thecrunchyandthesmooth.com/tube-weaning.html This woman’s son was on a gtube. She also speaks highly of someone who worked with her son. I googled his name and he is a psychologist in Seattle who treats children with feeding disorders and gtube weaning. Is Seattle far from you?

  20. MDH

    I recently watched this BBC docu called “The Girl who Never Ate” and thought of Apollo
    https://www.youtube.com/watch?v=NelpARXhoZY
    It’s about a litlte British girl who has been tube fed her whole life (due to a medical conditon at the time) and while she no longer has any medical need for the tube, refuses to eat. It follows her and her mom’s attempts to get her to start eating by going to some radical clinic in Austria. I found it interesting (the clinic’s methods are kind of disturbing – essentially starvation – though)

  21. Quinault

    What type of formula is he on? Is it high calorie? Our 5th child is on EleCare. 30 oz a day is roughly 1500 calories. That formula got him to go from 13 lbs at 11 months, to 21 lbs now at 17 months. We are getting his formula via Children’s assistance program. It is delivered every month along with his thickener. His pulmonologist (Dr. Ong) is the one that put everything in motion so he was placed on the formula. I have found that his appetite increases when he gets compact high calorie consumption.

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