Outside Hannah’s vocal cord weakness and laryngomalacia, our biggest issue for her is feeding-related issues.
I have to tell you. Trying to feed Hannah by spoon each day, few times a day, is my biggest disappointment. It is still an incredible fight to get her to eat by spoon, and she will still only eat stage 2 fruits by spoon. We still feed the majority of her food through her Avent bottles, even pureed stage 3 foods. She is now on whole milk and no formula.
HUGE accomplishment coming…
As for feeding by hand, she now will eat air-puffed foods. Cheetos are her absolute favorite. She will eat four or five of these at one sitting. She actually will dig her two bottom teeth into it. Thank goodness for Cheetos! She also is eating the air-puffed Gerber-like air puffed foods like the wagon wheels, air tubes, and the little air-puffed stars. She will also eat Vanilla wafers and gerber-like cookies!
So, we are definitely making some strides. We are dealing with two completely separate, yet both totally frustrating issues. First one is that she will not be spoon-fed. She also won’t eat it if we leave it on her plate, toys, or a spoon next to her. Yet she will put EVERYTHING in her mouth that is not food, and she will chew like there is no tomorrow on those. Yet, when she is willing to be spoon fed, we have to slip the spoon in her mouth, between her lips, at the right angle between her gums and teeth. She does NOT open her mouth for it. It will take 30 minutes for one stage-2 jar of food, IF we are lucky.
The other issue is that she doesn’t like chunks in her mouth. We haven’t been able to get into real stage-3 type of foods yet because of this. We are slowly making progress, as she will take thicker with micro-chunk stage-3 foods, like a blueberry-banana type that had tiny pieces of blueberries in them. Anything else, she will either spit out or attempt to gag out any little chunks.
It is almost as if she doesn’t put “chewing” and “food” together. She chews on toys. She chews on non-breakable food (like beef jerky, carrots, etc). But if it will be something that breaks off in her mouth. No chewing. That’s why the recent advancement of her eating Cheetos air-puffs and other air-puffed baby foods is such a big deal. She doesn’t chew on them, but she does work them in her mouth and swallow them.
Anyway, why are these a problem, outside of the obvious?
Hannah now isn’t getting enough calories. She has been around 20 lbs for almost 4 months now. It isn’t that she isn’t eating, the problem is that what she is willing to eat is just not caloric enough. In one day, she will eat about 7 to 8 jars of stage 2/3 foods plus about 18 oz or more of whole milk. Plus a few air-puff sweets every now and then. Five full meals a day. She just doesn’t have the stomach space to add more.
She is just so active now, especially in her little walker. She just zooms all over the house.
I talked to Dr. Vartabedian about it, Hannah’s GI doc, and he recommended started to add Pediasure and Boost Essentials to her bottles in addition to the milk.
Thankfully, we are meeting with a pediatric nutritionalist on Tuesday so we can come up with a real plan on feeding so that we can increase the calories, make sure she is getting the correct amount of protein, etc. We have been just “winging it” for so long, and since she isn’t making as much progress as we had hoped by this point at 14 months, we have to work with what we are given.
I dunno, 7-8 jars of baby food sounds like more than my 2-year-old eats in a day. Not to mention 18 oz. of milk, I’m lucky if mine takes 6. Maybe that’s why she didn’t make 20 pounds until she turned 2.
But if she’s not showing weight gain, and given her illness, I can see why you’re concerned/frustrated. Hope the Pediasure is accepted and that it helps! (My kid wouldn’t touch the stuff.)
.-= Carrie´s last blog ..End of Summer Fun Rush =-.
Hey there,
Congrats on getting 7-8 jars in her a day…THAT is an accomplishment, even if it isn’t stage three or spoon feeding at all times. Sounds like a lot of food, but I get it if she’s not gaining weight where your concern is. I was told (and I’m no doctor, so I can be wrong) that a lot of kids gain little weight from 1-2, that they get up to that 20 pounds or so and level off for a bit. I have an eighteen month old niece who my daughter (6 months) is rapidly catching up with in weight…my niece is at 100 percentile for height, less than zero percentile for weight, around 21 pounds.
You’ve had a bunch of accomplishments, I think, with your perseverance and hard work. Hannah is here. She is eating. She is stable. She is bonded. She’s zooming around the house. I remember reading your blog last year and you were concerned about each of these things and have been successful. I understand, truly, that you are dealing with a mountain here, but you have done some great work as has Hannah. (and Robert, we can’t forget.) Please celebrate some of your achievements if you can find the time. You’re whole family deserves it.
.-= melissa´s last blog ..Taking baby on an outing =-.
It really does sound as though she is doing great. I am so happy to hear she is eating so well. It’s hard to get enough calories in a gaucher kid. They burn 40% more energy than we do, and require more calories. You are doing a great job. I am always so happy to read about Hannah’s accomplishments and hope you know in our eyes, she is doing so well, making such amazing strides. Keep up the great work and don’t forget to take care of yourself, too.
I’m sorry the feeding has continued to be a frustration for all. Hopefully the nutritionist has some ideas for increasing calories and other foods that she may actually eat.
I’m sorry you’re having feeding issues. It’s a problem I know all too well. My daughter still only eats baby food and a few other things (Spaghetti-o’s, pudding, yogurt, and applesauce). I can’t even get Cheetos in her! She seems to have similar issues to Hannah, doesn’t associate food with chewing. It’s frustrating, and I understand completely. It’s due to autism and the sensory issues that come along with it. We’re currently waiting to start her in a feeding program as soon as our insurance approves it. This will be our second time in an intensive feeding therapy program, and I’m hoping this one works.
Keep on trying, and I hope Hannah eats better and gains better for you soon.
Does that mean the progress Abby made with spoon feeding was short lived? I was hoping that would continue to improve…
I’ll bet the nutritionist will have a lot of suggestions for you. My neighbor, who’s a registered dietician, has four children. The youngest (20 months or so) is a peanut and was diagnosed with failure to thrive after not gaining weight over a four month period around her first birthday. Her mom did whatever she could to add calories to the foods she was eating (she did eat typical foods in typical amounts, it’s just that nothing stuck with her). She added vegetable oil to her milk, for instance. I sure wouldn’t try that without an expert’s advice, but upping the caloric intake of the foods she will eat will probably be possible. And it sounds like the addition of puffed foods is a step in the right direction. For what it’s worth, none of my kids ever would eat purees with chunks — it either had to be smooth or table food for them.
Good luck…you’re always in my prayers, you know!
I feel your pain, at least with the food struggles! Our little guy dropped down to 19 1/2 pounds… at TWO years old (enter panicked mother). He has severe GERD/mild gastroparesis, so eating isn’t exactly “fun” for him (when you get rewarded with acidic reflux after every meal, you tend to avoid food). He’s now on Nexium, and we use DuoCal. We can add the DuoCal to his regular food (as long as it is moist) and it is only $25/can (cheaper than a lot of other additives). We can mix it into his yogurt, oatmeal, milk, etc. Its a flavorless powder, and other than turning everything white in color, you can’t tell it is even there!
I hope your nutritionalist can come up with some great ideas for increasing calories and food repertoire!
.-= Leah Lefler´s last blog ..Nolanisms =-.