Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, November 23, 2009

A word about weight

Now I know what you are thinking... I am not going to say much about my own weight except that it isn't were I hope or know it should be....

No, this is about Gator AND Ry ry (for that matter....)Weight is super important for a heart baby. The bigger they are the better they fight off infection, heal faster and usually have less problems later. If they have a little extra it means they won't come out looking like a mini stick figure.
Gator is 27 LBS I know I weighed him today. That is a whole pound down from the last time I weighed that kid. One pound, not just ounces but a whole pound that I fought to put on his body... Gaining weight is really hard for him.. Practically everything he puts in his mouth gets burned off by play. So putting extra on him is a trick. I think it is because he grew taller. He looks chubby cause of those darling cheeks he sports, but nope. So here is my issue, he is a pretty darn good eater. For a kid who has had oral overstimulating from tubes down his throat you would say he was a REALLY good eater. There are a few things he won't eat, that I want him to eat because although he needs all those extra calories now. What happens when he is older and has no good eating habits and turns into a tubba? What happens when his sister sees him get away with food murder and we don't let anything slide with her? She must eat a little of something I prepared, I am not a short order cook. So a fantastic example she is, and even though there is very little she won't at least try, I expect her to stay that good example... So is this fair? Gator will often pick and choose and sometimes eats very little of the dinner. Then later when we have treats or snacks, I let him have those too. If it were Ry there would be no way she could have the extras without eating the other... I figure he can use all the extra calories he can get...

I sure wish I could figure out how to do this fairly and still get Gator to gain weight. Maybe someone could just shave it off my belly, thighs, and under arms and give it to him.. (in small doses)

Also it is tragic that I can't get sick with the flu, I am like 6 flu's away from my goal weight.. Dang it.

Okay even if you are not a feeding specialist, but you have an opinion, I would like to hear it. Be brutally honest.


The Simmons Family said...

I wish I had some advice. Even with 1300 calories, Owen isn't gaining weight...argh. I can't imagine trying to give that by mouth. GOOD LUCK!!!

skyfighter said...

I am in the same boat as you not just with Roman, but my own weight. For example last night, I let Roman eat the cookie despite not finishing his dinner where as I would not have let the boys do the same. It is a hard thing to explain to the children. This is why my almost three year old will still get a bottle during the day because I know that is one way I can get a couple hundred calories in him where as a cup he only drink a little from. Very Frustrating at times. Hang in there. I just tell my boys that for Roman it is different because he has a special heart and that we have to make good food choices to keep their hearts from becoming broken. Not always easy though. Oh, I lost your phone number because I washed my cell phone. Would you please call me at 404-754-0255 or email me your number so that I can get in contact with you when I come in three weeks. Hugs, Kelleyn

Traci Bulkley said...

No advice from me either, but something I will have to think about in the upcoming years.

I should ask my mom. I have a little sister who has Cystic Fibrosis. She has always needed to eat a lot of calories. I was 8 when she was born, so old enough to understand a little better. I know my mom did try and give her more good fats than just treats, or like tried to add more butter to sister's food. Stuff like that.

Kristine said...

Sigh...not much more advice here. I do all of the standard stuff.

Add butter and olive oil to everything Katie eats.
Skip all of the lower calorie food and go straight to the high fats.
Full fat Yogurt, lots of cheese, whole milk, carbs, avocado and mayo.
I add Duocal to some banana pudding to get an extra 100 calories in each day.

All this and she still isn't gaining! But she's not losing, so that's something I suppose.

Hope this helps.

Kyle and Alli said...

Man... tough parenting dilemma. I do however like the idea of passing my extra weight on to Grant. When you figure out how to shave a little from here and there and pass it on to Gator, be sure to let me know!!!

Lance and Raegan said...

Brynn, I have no good advice. I just loved the idea of shaving a bit off. If my kids weren't so bulky themselves I might try giving them a few of my extras. I love what you said about being 6 flu's away from your goal. You kill me! Love ya!

Cason Clan said...

Ellie is gaining weight, but I know how paranoid I get when it's not enough or possibly too much. I usually come out worried one way or the other. They worry that her heart won't keep up the bigger she gets, but also they still want her to grow. She gets most her calories from a high calorie bottle diet. She is also fed orally. It does help that she wakes up every three hours and won't go back to sleep without a bottle. It works, but we lose a lot of sleep that way. Sorry I can't be a better help.

Becca-Ellie's mom

Molly said...

Have you tried PediaSure? Our Dr. gave it to us for Alice to try and she's not a huge fan, but I think it's growing on her. I can't get her to drink enough to make a difference yet, but soon, I hope!

Missy said...

I have a similar problem. One of Scott "Autistic" traits is that that sence of taste is hard for him to deal with so he really doesn't eat anything. (I'm sure you know all this I whine about it all the time) Scott is such a picky eater that I let him get away with murder when it comes to eating and It isn't fair to Ellie that I let him eat somethings that she can't, like extra snacks ect.
I know this might not sound nice but it works for us: When I'm in the situation where I'm giving Scott some food that Ellie cannot have. I remind her of the things that she can do that Scott can't or isn't able to. Like playing with friends, playing with me, eat a full meal, talk, sleep....Then I find a distraction or a substitute. and move on even if there is tears. We've gotten a lot strickter with her because she has gotton chubby. I feel bad everytime I say no. but It works for us. and it keeps them both healthy. Good luck!