Monday, December 7, 2009

Questions about 18 month olds

At Daxton's last cardiology appointment we discussed not feeding him through his g-tube during the day and see how he does. He has done relatively well. He had a little bug for a few days and was throwing up a couple times. Besides that the eating has gone well. We were still tube feeding throughout the night until the other morning I went in to get Dax up and he was wrapped up in his tube. It was all around his body and around his neck. Needless to say this has scared me to death. I haven't tube feed him at night since that happened. Overall he eats way better during the day with out the tube feeds at night. So now my questions and concerns are these.....

Heart moms-
Why are the cardiologists so concerned about weight gain with transplant babies? Does it have to do with their heart, does more weight make it function better? Or is it because he is not on the chart? He is on a steady curve upward but I honestly feel it will be a long time before we are caught up with the "normal".

All moms-
What is "normal" for an 18 month old? How often do you feed them and how much? We were just told by our pediatrician to take him off of the bottle so we are doing sippy cups now. How much do your kids drink? Are their diapers still full after a nights sleep? I know that Daxton is my third child and I should know all of this but I can't remember and honestly my girls were not great eaters.

I am going with my gut on this and I hope it is right. I am nervous for when he gets weighed in. Any help and advice would be so very much appreciated.


The Simmons Family said...

I wish I could help you. Owen is on 1300 calories a day and all tube fed, I can't get him to eat by mouth because he's ALWAYS full. It's a losing battle. If we weren't ramping UP for transplant I would do what I wanted. :) Go with your gut. See how he does for a week and if he gains. I'm pretty sure most 18 month olds should have around 800 calories a day. You can also feed him and when he's DONE just blend up the rest and inject it into his tube. Good call on the night drip too. I am trying SO hard to get rid of that!!! It's just so un-natural to eat while you sleep.

Kaidence's Mommy said...

OK, my opinion is just trust your gut and run with it. I have kinda done my own thing with Miss K. You know Daxton better than anyone. I say play around with it a bit. One thing I do is strip K down and weigh her. I have a doctor scale, but haven't in the past. Just get a base weight on your scale at home and keep track from that. Either way you will know if he is gaining, losing or just staying put. It gave me a little more confidence to play around more with how I fed her. I won't lie, sometimes we were down and I had to quickly bulk her up for our appointment that was coming up in a couple of days.When that happened,I would bolus feed her and not give her much time to take anything on her own.

I do think that it is mainly numbers and wanting them to be on the growth chart. We are finaly to the point that she bounces back quickly after losing weight when sick. My McCaden is lower on charts for weight as well and he is tall. Kaidence seems to take after his build, making me stress less about it.

Kaidence is eating during the day. I have been tube feeding her 16 oz each night and her weight gain jumped. She is around 28 1/2 -29 lbs. She also drinks alot of milk during the day as well and just started taking carnation breakfast as of today. It has been a SLOW process as you know well. However, there seems to be light at the end of the tunnel. I do notice that we revert back a great deal with our oral skills when she gets sick. It is like she lacks the self confidence to swallow. Also, her tummy takes longer to tolerate night feeds again anf we have to cut back and build back up again slowly.

You will know what to do. Your a great mom. Just weigh him daily and see what happens.

ChristophersHeart said...

I'm a heart mom to 2 2 1/2 year old Chris with CHD's. Weight has always always been an issue for him, he wasn't on the chart at all until after his second birthday when we put in the he's on it, but just barely. We are having similar struggles - cardio wants him to be bigger, and my understanding is that being underweight isn't ideal should/when more surgery comes up. And for Chris hydration is also the issue because when he's not hydrated he easily becomes tachycardic, not ideal for a boy who's heart already beats faster than normal.

Our dietitian would love him to have 1200 mls of fluid a day (yeah right!). We give some formula (Nutren Jr and Resource Just for Kids 1.5) via tube and sip cup. We offer 3 meals and 2 snacks packed with extra calories. Chris has oral aversions and reflux so eats next to nothing.

The trick for the tubing and the night feeds? Thread the tube down his pajama leg and out the bottom....then you can be sure it won't ever end up around his neck. Gives me peace of mind for our night feeds.

heart mom to Chris, 2.5

The Stewart's said...

Here is my experience with Alex. He has been very slow to gain weight, 20 months old and he is 21 lbs. Cardiology tried pushing the g-tube on us, but we wouldn't do it. We felt like it would be more of a set back. So Alex has been on a higher calorie diet - they call it Power Packing for Children. Basically all I do is feed him anything he can handle that is higher calorie. Ramen noodles, cheetos, fruit in heavy syrup, french fries, veggies with tons of butter, pasta with tons of butter. He never gets plain milk, always has syrup added. Almost no juice. Alex is in his highchair 5 or 6 times a day for meals and snacks, plus what he eats off my plate. He started out really slow with the eating, but as the months have passed his appetite has grown, and his weight is finally moving to an upward trend instead of almost a flat line. We had been doing the Carnation Instant Breakfast for months, but it didn't help with him feeling hungry and wanting to eat. It filled him up to where I think he almost always felt full. Once we stopped it we really saw improvement.

Cardiology told me that the reason they are so concerned about weight gain is that they want to make sure these kids development doesn't stop. They told me that if the weight stops, then often the height stops, and then the brain stops developing, and then there are problems.

I don't know if any of this helps, but it's what we have been through.

Heart Hugs, Alex's mommy

Staci said...

I think that for heart kids, their bodies are working harder than regular kids just to stay alive, so they burn more calories this way. I understand how you feel about the growth chart, just make sure he keeps gaining weight. If that happens by only feeding him during the day-well that is how other babies do it. Maybe talk to Jen (cardiology dietician) she might have better reasoning.

Staci (angel Bridger's mom)

Cason Clan said...

I too feed her oxygen tube through her pajamas so she doesn't get tangled. That may change as she gets older. Ellie is on a high calorie diet and she is doing pretty well, but every time I ask about it, they say it's not enough weight gain. My second child was 15.1 at a year so I am thinking Ellie is doing awesome, but they want her bigger I guess. She gets most of her calories from 24 cal. milk. 1000mls a day from that alone. It's hard to know when you have a heart kid. Suddenly you feel like you have never been a mom before, because everything is so different. I just found out that teething tablets can interact with her heart meds. Good luck with everything. Becca

Aimee Hardy said...

I don't know that Jack counts as normal, but he still drinks around four 6 oz bottles each day, usually between meals and before bedtime. I've tried to talk him into a sippy cup, but he just sips and plays and doesn't drink very much with them so my pediatrician said that it was ok to keep giving him a bottle for a while.

I agree with Andrea and Shauntelle that you've got to go with your gut and do what works for Daxton. You know best.

Good luck!

oleyfriends said...

I hope you are done with the tube feeding -- but if you need to do more, there are loads of tips and lots of information (all FREE) posted on the Oley Foundation web site at www.oley,org.

In particular, you might want to check out the tube feeding tips page (posted at Check out the section on helpful products, there are many tube holders, special cloths etc. that might help with your tangled tubes in the night.

ALSO -- I'm very happy to connect you with other parents of tube fed children who might have more tips on this issue and others.

Best of luck on your journey.

Warm regards,
Roslyn Dahl
Oley Foundation
(800) 776-OLEY

Orley said...

Put some beer in that boys cup... he'll gain weight - no problem. If you wold like, I could come over and have a few with Dax while Ryan and I play video games... this will ensure his brains development as well as his hand/eye coordination. Just say the word...

Jones said...

Nevaeh is having problems with weight as well. The cardiologist is not happy with where she is at and said he will recommend tube feedings if i do not put weight on her. My peditrician sees a different picture. All my kids are in the 5th percentile. How can i expect Nevaeh to be bigger than my other kids? I will refuse a tube if the cardiologist pushes it. Follow your gut my dear. You are Daxton's real expert. Pray about it! As that God makes the choice clear. So weight gain with foods. I want Nevaeh to have good eating habits and not feed her junk. So i add olive oil or butter to everything she eats or drinks. You can even add olive oil to juice. she is doing well with that and has made great progress.

The Dustin' Man-goose Family! said...

Hey - it's Cori, remember me? I found your blog through Erin's, and just thought I'd say hello. My heart goes out to you and your little boy. I can not imagine how hard it must be always wondering if your child is okay. My baby was in the NICU for just a few days and it was awful; having something so huge to help your little one through must be heartwrenching. Good luck with the weight gaining. I'd suggest peanut butter, but I don't know if he can have it yet. Oh, and cheese.