Tuesday, June 1, 2010

figuring out a blended diet

So I just kind of wanted to give a little update on what feeding Jonah looks like these days. Our schedule goes a little something like this -

7:30 or 8:00 to 9:30 - Dressing Change
9:40 - 10:40 - first meal
10:45 - 12:30 - nap
12:30 - 12:40 - bolus 2 ounces of water
12:40 - 2:15 - window to get out if we can
2:30 - 3:30 - second meal
3:45 - 5:00 - nap
5:00 - 5:10 - bolus two ounces
5:10 - 6:30 - hang with dad, play time, set up for tomorrow's dressing change
6:45 - 7:45 - third meal
8:00 - bedtime, overnight drip of water

So... life is busy. But good. Better. No more puking. I have to get his feeds to thick yogurt consistency. As long as I do that and push it (usually around eight ounces) slowly over 45 minutes to an hour, he does fine. I start the feed with a one ounce flush of water and end with another one ounce flush just to get some additional liquids in him. The "meal" usually consists of four to five ounces of solids mixed with three to four ounces of liquid (formula, Lactaid whole milk, orange juice with calcium, apple juice, or V8 fusions). Each meal is anywhere between 280 to 350 calories.

This is what we ate last night. I made Mushroom Stuffed Chicken (from Cooking Light), egg noodles, and green beans. I kept up with the total calories as I cooked, took 1/3 of the green beans, 1/4 of the egg noodles, and one of the six pieces of chicken, and figured the calories for just that amount.


Then I blended it, with a little chicken broth, in the awesomest blender in all of creation...


And Voila! I put it into ice cube trays and divided the total calories by the ounces it made. So now I have little frozen 43 calorie blocks of chicken/noodles/green beans for Jonah's future eating not-so-pleasure.


And this is the Taco Salad I made tonight (minus the chips, plus some sour cream for added dairy and calories). Doesn't it look so tasty??? Whatever. Forty-eight calories per ounce.



And this was his dinner tonight - two ounces of Baked Ziti (from last week), one ounce of Avocado (LOADED with all kinds of healthy stuff and 50 calories per ounce), one ounce of Spinach, one ounce of Apple Cinnamon Oatmeal, an ounce of Lactaid whole milk, two ounces of formula, and one teaspoon of Flaxseed Oil (65 calories!).


And at the beginning of each feed, we offer yogurt by mouth. Some feeds he loves it, some feeds he cries, gags, and pushes it away. More dairy. Usually an additional 50ish calories. In addition to his meals he gets Polyvisol with iron, and Zinc, Vitamin C, and Protein supplements every day.


And he also enjoys a bite of his remote control (Thanks, Rory and Quinn!) every now and again.

And he watches the Baby Einstein Newton DVD and plays in his high chair (usually pretty happily) while we do 10 cc's at a time. Isn't he the cutest?



So that's it in a nutshell (20 calories... just kidding). It's a ton of work but completely worth it. Jonah isn't throwing up, and he's getting all the calories he needs without all the liquidy volume he can't handle. And with the overnight drip of water, we're still having plenty of pee pee diapers each day and crying real tears, so he's plenty hydrated.

Things, for now at least, are good. He may not be getting the "complete nutrition" his formula would give him, but I guarantee he's eating healthier than 99% of 15 month olds. He's definitely eating healthier than I am. :)

I know several of you may be facing the same issues and maybe the decision about the blended diet. It might not work for everyone, but so far, it has been a lifesaver for us. It is VERY hard, extremely time consuming, and I have the most ridiculous spreadsheet you've ever seen, but it is SO worth it. And I think it will get easier with time. Thanks to
Andrea for all the help. I can never thank you enough!

20 comments:

Stef said...

God knew exactly what He was doing when He made you Jonah's parents. I read this and it puts my day with typical developing baby issues into perspective.
Im glad things are continuing to get easier on the feeding front :)

Jennifer said...

Patrice you are a Rockstar MOM!!!! Only the best for Jonah!!! You go girl and someday when you get the chance...please share a pic of your spreadsheet. Always praying for your family, -Jen

The Simmons Family said...

That schedule looks so familiar! HA. It is time consuming, but SO worth it.. just like you said. Anything is better than cleaning up puke all day. Owen just puked up his dinner.... guess 500 calories is too much... but I was so grossed out with the puke. I can't believe I used to deal with that multiple times a day. It definetly makes the constant feeds worth it!

I'm also glad you LOVE the blender! Isn't it fantastic! No more wasted leftovers for dinner either. I do the same thing. Measure, blend and freeze. It's so convienient to pull a few cubes out and defrost them the next night for dinner.

You are so welcome. I'm thrilled that Jonah is taking so well to it!

Laura A said...

Once again, I'm just amazed! So glad the Vitamix and the blended diet are working for sweet Jonah. Baked ziti - who knew?!

Continuing to pray for you, Matt and Jonah!

Love from TX!
Laura

Amy said...

Amazing, you are amazing....that's all I can say! Mealtime for me is the hardest part of the day and not because of anything at all like you're going through. Tomorrow I will count my lucky stars when my son asks to eat frozen waffles all day long.

Ben said...

Patrice,
Iwas just curious, because as a pedistric nurse for 19 years I have never seen EB and have learned so much from you not only about the physical aspects of EB, but after your last hospital stay, how to be a better nurse, not only to those with EB, but really to all of my patients. You showed me how very important it is for me to LISTEN to my parents and to let them do as much as they can their way if it is at all possible, not to do it our way just because "that's they way we always do it". Anyways, back to my quisetion, isn't there a risk of Jonah getting TOO MUCH water and getting HYPONATREMIA, or low sodium which can cause seizures (which happens when we drink too much tap water and "water down" the blood's electrolytes.
does Jonah get Speech Therapy to help with his oral aversion? I have seen them work miracles with kids who have "short guts" or oral aversions for other reasons. You are such an amazing Mom! Jonah and Matt are very Lucky to have you! No longer will I complain about my "Picky eater" I don't know picky do I??

Melanie Whitaker
Perrysburg, OH

Kristin said...

You are a ROCK STAR MOM! Your hard work is obviously paying off and I'm so happy for you. Praise the Lord!

Emily said...

Congrats again on being one of the most amazing parents I'll ever know! I know first hand how complex a blended diet can be, but you are doing a fantastic job. Plus, personally I have always felt better feeding real food than an entirely liquid diet (even if it is formula). He's eating super healthy and getting so many calories every day!

Meg said...

Looks like you've got a great system going!

You might want to try some goats milk for Jonah, I just read about it and I think it would be a great variation from cow's milk, I read about it here on Dr Sears website (you may or may not have heard of them before?) and felt I should share with you guys...

http://askdrsears.com/html/3/t032400.asp

Mommy2Four said...

Hi Patrice!
I'm so so so glad things are getting easier on the eating front! You are such an awesome Mommy for figuring out this blended diet thing!
As for oral feedings, I don't know if this information would apply, but I thought I'd throw it out there. I really relate to your feeding struggles, as we went through a really hard time getting Sierra to eat after her palate surgery. It was months of struggles just to keep her hydrated. Everything hurt when she tried to eat, so she just wanted to give up eating! I wound up finding a woman in her 20's, that had a cleft palate that wasn't repaired when she was a child. She went in for the surgery a couple weeks after we got out of the hospital. She took the time to write me, and to tell me that any variation of hot or cold, hurt something awful. THe wounds in her mouth were so deep and sore that cold foods sometimes even felt worse than warm ones. She suggested I try to make everything I give her room temperature, and sweet...... and it worked! Now, I know EB and a cleft palate are different, but I was thinking if he has any sort of wounds in his mouth or throat, that this may help! Either way, my family's still praying for you guys! My kids always want to check on baby Jonah!

Lindsay

megan said...

You are amazing. Your patience seems neverending. Thanks for the update!

Amy said...

That's awesome! When my son was a baby I made all his food too and used the ice cube tray method so he could eat what we ate. I even sent food to his daycare because I didn't want him living on mac-n-cheese and canned ravioli everyday.

Have a great day!

Island Baby said...

I have to comment and say that Jonah looks JUST like his momma!

I love how you are blending his food now. Would beans blended up work? Beans are packed with protein so was thinking it might be good for Jonah.
Extra zinc supplements might help his skin heal faster. I took extra zinc after my surgery as recommended by the doc and my incision healed up so much faster this time.
Just curious, why don't you run a feeding drip during his two naptimes while he is nice and quiet? I am sure you must have your reasons! Would love to see that spreadsheet you talk about. I bet it is amazing!
Keep up the good work mama! You are doing the best for your little boy and it shows.

Gail said...

Sounds like you are figuring out what works best for Jonah and getting into a routine. Happy to hear Jonah is not puking and getting lots of calories. You and Matt are doing a great job. I love seeing pictures of Jonah...he is getting so big, and he is just so cute! Praying for continued success with the feeding.

K said...

You are awesome!

Do you have an automatic pump to push his feeds?

Do you have a Little Green Machine? It does wonders on cleaning up vomit. Just suck it up, rinse and suck some more and you are done.

I'll be praying for you and Jonah.

Lilly said...

you are an AMAZING family! Jonah is such a sweet boy and he's got some incredible parents!!!!!

KSB said...

I am not a frequent commenter, but I gotta tell you just how impressed and inspired I am by you, your husband, your faith, and your sweet little man. He is so blessed to have you, and I KNOW you feel so blessed to have him. I cant often offer much advice or feedback on your posts, but I thought Id offer a great DVD suggestion for you and Jonah :) My daughter is about the same age as J and she loooooves the Leap Frog "Letter Factory" DVD. Whitney knows the sounds all 26 letters make (and shes only 13 months old) simply because she watches that DVD. (And Im a former teacher, so I would LOVE to take credit for her brilliance..but alas, it was all the frog's doing.) It might give him something new to look at and give you a break from Baby Einstein :)
We think of you often and keep Jonah in our prayers nightly. Hugs!
Kathleen

Anita Johnson said...

I'm so glad this is working for you...and I know little Jonah is glad to have you as his mom. You both are blessed! Happy blending!

Michelle said...

Hi Patrice! I don't comment, but I do check in almost every day. I love reading your blog, you are such an inspiration to me and I just love your sense of humor! I did want to tell you about some DVD's that my daughter loves. They are from Preschool Prep Company and they have letters, shapes, colors, numbers and also meet the sight words. She started watching them when she was around Jonah'a age (we received one as a gift) and she is almost 4 and still loves to watch them! She has really learned a lot from them, too. I am amazed at the words she recognizes. Anyway . . . just wanted to mention them to you.
Continued prayers for you and your precious Jonut!

CycloneMomma said...

Just curious, based on how he holds that remote control, do you think he could hold a piece of corn on the cob and enjoy chewing on it? Or would it get his bandages too dirty? I know my kids loved and still love corn on the cob.