Miss Lydia Rose: January 2018

I just finished writing this email explaining all the ins and outs of our whole foods blend. I never would have thought I'd be giving advice on this topic to other parents wanting to do this for their children. I also wrote and email to a couple that is expecting a new baby that will need heart surgery. I'm helping them through this process because even though the defect is different, the experience is similar.

It's just so neat to look at all the people we would have never met if it weren't for Lydia. All the staff at CMH, the Infant Toddler team, our nurses and staff at Maxim, and all our case managers with insurance and the waivers. Carrie, Dana, Wanda, Laura, Kipp, Cindy, Ann, Katelyn, Mary, Ben, Corinne, Addie and countless others have become part of our lives and in many cases, our friends. It's a good place to be if you find yourself having to be in it.

Dear________.

So it sounds like you're starting to do whole food blends and it's been tough getting it just right. It also sounds like you have the calories and foods figured out and just need help from the blender to the belly.

What blender are you using?

If it's not a vitamix or a blendtec forget it. We have a medically discounted blendtec and it's amazing. When we got ours I had to mail in a form and then follow up with an email. If I were you, I'd just call customer support and find the right person. Ours was $100 with shipping and we received it in under a week. Also, ours stopped working once and they over-nighted us a new one.

https://www.blendtec.com/blog/category/all-the-difference/

What pump are you using?

We were able to use our Moog Infinity Pump, the teal one, for a while when her food was thinner, but it's a process. There is a part of the loop on the bag tubing that had to be broken off. There are youtube videos out there if you want to try it, however, we got a shipment of bags that this trick didn't work anymore and others started to experience the same thing. So, we started doing bolus feeds with syringes and I'm never going back!

What syringes are you using?

We got some 60ml syringes from CMH home care and they are pretty useless with the blended diet. I, my dietitian and many other tubie mommas would recommend syringes from the Squirrel Store, yep, they're for squirrels and they are amazing. I've been using the same 4 syringes for over a year and they never wear down. You'll want the 60ml/cc O-Ring Syringe with catheter tip. They fit right into the extension of a Mic-Key button and an AMT MiniOne button. It's also helpful to get some syringe tips for on the go. We just load up our syringes, toss them in a cooler and away we go. Oh, so the cooler that these fit in when filled is the ThirtyOne Thermal Tote. Also, if you're going somewhere and need more food than what your syringes can hold, and even if you're just at home filling your syringes, this bottle makes all the difference. It's the Squeasy Bottle. It's spill proof and it's never leaked on us. You flip it over, stick the syringe tip in and draw up your blend. Game Changer!

http://www.squirrelstore.com/product/80013

http://www.squirrelstore.com/product/80022

https://www.mythirtyone.com/product/3000/thermal-tote-chevron-squares

http://squeasygear.com/16oz-gray-squeasy-sport/

What is in your blend?

We have a recipe that is generic and adjusted by our dietitian through Infant Toddler Services. When I say generic I mean is x amounts of fruit, veggie, grain, protein and fat and I make up what I want to put in. I mix and match as much as possible to make sure Lydia is getting a larger variety of nutrients. I mainly buy big bags of frozen fruits and veggies from the wholesale club. I cook up a large crockpot full of chicken, pork, beef and fish. I usually mix oatmeal, multigrain bread, whole wheat pasta and rice. She gets a mix of avocado, olive and coconut oils and a bit of salt. I make up 30 freezer bags at a time of all of the above and pull two out at a time to blend up. I used to freeze things separately but now it's all in one bag. Each bag is one day of food. We use 2% milk to blend with and if it seems a bit too thick just add some water and store it in the fridge in Rubbermaid containers. She's also getting water flushes 30 minutes prior to when she eats. It's a lot of work and takes about 3 hours once a month but I sure think it's worth it to give her real whole foods.

Some resources I've used and will rely on more heavily in the future. Lydia is 2.5 years old and transitions out of Infant Toddler Services this summer so we lose our dietitian that has been instrumental in getting us on a whole foods blend.

Blenderized RN is amazing. You can find her on FB, Youtube and a website.

https://www.facebook.com/groups/BlenderizedRN/?ref=group_browse_new

http://www.blenderizedrn.com/

I've also found these helpful from time to time, especially when trying to figure out low volume calorie boosters other than oils. Also, troubleshooting - there is always someone awake and watching these pages it seems and you'll get quick responses to your questions. They aren't all supporters of a blended diet but still helpful.

https://www.facebook.com/groups/1024004510994521/?ref=group_browse_new

https://www.facebook.com/groups/854870557932989/?ref=group_browse_new

https://crunchytubiemama.com/

http://www.foodfortubies.org/

Okay, so take some time to digest all of that and let me know what questions you have!