So small
Justin is really small. I mean reeeaaaal small for his age. He’s eighteen months, and I feel like he’s been a baby forever. And, no, I’m not just saying that because I see him everyday. Loi and I measure him (length and weight wise) often.
He hasn’t grown spectacularly well. His weight fluctuates up and down. He is now at a constant 18 pounds. As for his height? He’s about 29 inches. He’s a full head shorter than other kids his age. He is not on the charts for weight or height, as in he’s below the 5th percentile.
I wouldn’t worry so much about this if he were following his “own” curve, growing at his own pace. But, for a couple of times, he fell off his own curve, and this got me worrying.
Through the medical and personal accounts that I’ve read, CHD patients are expected to be smaller for their age. Through my experience, now I see why. CHD patients don’t normally eat that well because they often tire before eating enough. They’re gastro-intestinal system is not as efficient in absorbing food and distributing the nutrients and calories because they’re heart isn’t beating at its optimal. The calories that do get absorbed are mostly allocated to the functioning of the heart (which works harder than a normal heart), or the brain. So, with the little calories that they do consume, the majority goes to their heart or brain, leaving little else for the development of other parts of they’re body.
So, Justin’s small-ness can be attributed to nutrition, or the lack of.
What makes me wonder if it’s just Justin’s diet that is causing his inability to thrive is this: when I read about other CHD children, or ask their parents about their development, I find that although the children are small, they’re still within the normal curve. Justin is waaay below it.
Let me also point out that Loi and I are not particularly tall people. I’m at a borderline 5′0, and Loi is 5′7. With this observation, doctors are also quick to point out that Justin’s size may have to do with his parents’ petiteness.
Ok, fine. But, he’s NOT really growing.
This leaves me to wonder, with the inside of his body as messed up as it is (stomach on the wrong side, malrotated intestines, no spleen, hanging pancreas, large liver), not to mention his heart defects, I wonder what other systems in his body are affected, too. Most particularly, his endocrine system. As complex as the human body is, where every system works in accordance with the others, I wonder, how his heterotaxy affects his endocrine system.
I can’t find information anywhere about this. I’ve asked this question on the online support group board. These children vary in sizes and complexity, so it’s hard to compare.
My next resort, after speaking to his cardiologist and pediatrician, of course, would have to be testing. As in, poking and blood drawing. This is another can of worms I must think before opening.
Justin is happy. Should I just leave well enough alone?
February 13th, 2009 at 11:48 am
One of the books I’ve been reading had a section about feeding and growth issues for CHD kids.
Book link: (http://www.amazon.com/Parents-Guide-Childrens-Congenital-Defects/dp/0609807757/ref=sr_1_1?ie=UTF8&s=books&qid=1234550739&sr=8-1)
One of the things they mentioned is supplementing breast or formula with high-calorie powder add-ins. Basically, because CHD kids do tire easily before eating a large quantity, super powering the smaller volume they do eat can help them get enough calories.
February 13th, 2009 at 1:11 pm
Thanks for the resource. I will definitely look into it.
I have been supplementing Justin’s milk since he was 1 month old. He was growing really well in the first 3-4 months. Since, then, not so hot. Now, I supplement his milk with Carnations Instant Breakfast, and I feed him high caloried foods such as yogurt, cheese, cream, etc, in addition to healthy fruits, vegetables, and grains.
He just doesn’t eat a lot. I tend to puree lots of his foods so that it’s easier for him to eat. But, now that he’s older, he has more of an opinion on how food gets in his mouth. He likes to feed himself!
I’ve also read from other parents that no matter how many calories their child consumes, they still grow at the same rate. And, there would be times when they gain several pounds in a month or two after months of no growth. So, I suppose it depends on the kids?
Seriously, I do everything I’m supposed to do, and wonder what else I can do. I guess the next thing would have to be the tube :(. But, we’re not going to go there!
Any other resource would be greatly appreciated.
February 13th, 2009 at 3:54 pm
Hi,
my son is a heart kid too and he’s 19.5 months and very underweight. He hasn’t been on the growth chart or even his own curve since about 3 months of age. He has GI -reflux in addition to his heart so eating is a huge challenge. He still barely eats solids. We give him Pediasure Plus or Resource Just for Kids 1.5 (basically they are 237ml cans but have 377 calories 1.5 cals per ml or something like that). So he can drink less and get more calories. Normal formula wasn’t enough and it wasn’t complete nutrition for him at this age and milk is way less calories. It has helped him at least maintain but gains are slow. Our dietician helped us get this and our doctor actually gave us an Rx for it. Some insurance companies will pay for it.
email me if I can clarify anything a bit more for you.
Good luck, the growth/weight challenges are tough with heart kids.
February 14th, 2009 at 9:35 am
I certainly can’t answer your final question, but I think that if you continue to be as resourceful, studious and careful a mother as you have been, you will uncover the answers you need. I hope you will find them quickly and have the comfort of knowing that you are doing all you can to promote his growth and health.
February 17th, 2009 at 8:05 am
I read about so many heart parents who have this same concern. It is so tough! While Elijah has always eaten well, I still worry about his eating all the time. And he is really super short for his age, so I worry a lot about this, too.
Does Justin like cream cheese, or regular cheese? These are two things Elijah loves that are just packed with calories. I’m sure you’ve tried about everything…
I’m sure his little body is just working extra hard. It has a lot going on. I hope you can find peace surrounding this issue. You know, there are even heart babies who are 100% tube fed who still have these issues. It’s just such a tough thing, especially for the mamas who are left to stress about it. Praying for answers, good eating and PEACE for you! oxox