Wednesday, June 26, 2013
In my last post my goal was to empower momma's (or dad's) to give homemade blend a try. I wanted to ensure them it is not as hard as they may have heard from professionals who, quite frankly, have never done it but only have read about it. Today, I want to give a few practicle tips that may be helpful.
First of all, you need a blender. If you intend to do homemade blends for a substantial amount of time, you need to invest in a good blender. The two recommended by blending parents are the Vitamix or Blendtec. I know the Vitamix has a medical discount where in exchange for a doctors note of medical necessity, they will send you a refurbished one at a pretty good discount. But, even with the discount, they are expensive.
If you can not afford one of these high powered blenders, don't fret! Start saving now and use your regular old blender in the mean time. You may not be able to pulverize meat like the high powered blender allows, but you can still make a blend for your kidd-o. I made baby food for all 3 of our other kids with a normal blender... it just takes a little more liquid and a little more patience, but it can be done!
Secondly, if you want to "lazy-blend" like me and make big batches once a month, start saving for an extra freezer (preferably a deep freezer). You can find used ones pretty cheap on Craigslist. I know there are many families who make a blend every day for their kids, but I just can't do this for several reasons: #1 I'm too lazy to do all that cooking, blending, and cleaning every day, #2 I have 3 other kids to take care of, #3 I can't get laundry done as it is.. adding one more thing to my to-do list isn't going to help this, and #4 again... I'm lazy. I like to make one huge batch for the month then freeze it.
Once you get enough freezer space, place the blend in glass mason jars and freeze them without the lid. After they are frozen, put the lid on to keep them fresh. Dominic eats enough that every day we go through one mason jar. I have the night nurse make the feedings for the whole day (or in the rare case we don't have a night nurse, I make it). It's super easy! You defrost the mason jar (the day before or in the microwave that day) and pour the right amount into bottles. We also make all of the milk bottles so all day we just have to grab a bottle out of the fridge when it's time to eat. Again, a short cut for those who are lazy/busy/whatever.
My last suggestion: recruit help! I am lucky enough that my momma helps me make Dom's blend every month. If you don't have a momma or momma-in-law close, bribe a friend with a margarita. You can easily do it alone, but a friend and a margarita (or coffee before noon... whatever) makes it way more fun. :) And besides, everyone wants to help these special kidd-o's... this is a practical way they can!
So, go ahead... blend!
Friday, June 21, 2013
|Dominic trying out a gait trainer... still a little too small for it!|
Often I receive praise (very uncomfortably I might add) from people who perceive me as some sort of super-mom for feeding Dominic real food. While the sentiment is kind, the reality is they would do the same thing if they has a tube-fed child and were expected to. Just as we are all expected to feed our typically developing children good, wholesome, nutritious food, we should also be expected, taught, empowered and encouraged to feed our tube-fed children the same!
With the exception of the children who require specific diets with very close supervision due to medical complications, beginning a blended diet is not that hard. If in fact your child does have specific issues that real food would affect, I would encourage you to look high and low for a knowledgeable and supportive dietitian to guide you through, even if this means contacting the woman who literally wrote the book about blended real food (as I did in a moment of despair). Because Dominic isn't typical and his motor development isn't either, he doesn't fit into any of the pre-made growth charts pediatricians use. Thus after searching and asking in many different ways for some guidelines of feeding him, I once again took matters into my own hands and now have him followed by a dietitian from Early Childhood Intervention. All this woman does is come out once a month to weigh and measure him. We then look at his growth velocity curve and decide if he needs more or less quantity, fat, calories, etc. I then adjust that next months blend to fit that.
At the urging of our hospital dietitian, I, in the past, made complex spread sheets with everything weighed and measured out to the ounce, charting everything from calories, fat, cholesterol, sucrose, etc. per ml of blended food. I found this to be a ridiculous waste of time. My new method of following his growth velocity curve seems to be working much better for us (and is MUCH less work). As a small example, if he is gaining weight too slow, I increase his meat and coconut oil in the blend. If he needs to slow down on his growth, I substitute lean chicken breast for roast and cut down on the coconut oil and butter.
I want to give you a brief outline of how we started with Dominic in hopes of empowering you to give it a try!
Just as any typically developing child, you want to start with one food at a time to check for intolerance's. You can begin to check for intolerance's using jarred baby foods since you won't be using enough to warrant making a huge batch of real blended food. We have never used a pump for our blended foods, we bolus every feeding with a 60 ml syringe over 15-20 mins (this time got much fasted after introducing real food- less spit up issues). Some people use a pump, but this seems to be more work than it's worth. The pump could get clogged, you have to worry about the food spoiling hanging in the feeding bag for so long, and how in the world could you possibly clean all the bag and tubing to ensure safety? Some people so it. Not I. (Side note: often beginning blended foods decreases the need to feed over such a long period of time, thus making bolusing the food more practical. It also, in our case, reduced then finally stopped his spitting up and reflux). Here's how we started:
Week 1: 10 ml green beans via med port (in place of 10 mls milk)
Week 2: 10 ml green beans, 10 ml carrots (in place of 20 mls of milk)
Week 3: 10 ml green beans, 10 ml carrots, 10 ml butternut squash (in place of 30 mls milk)
..and on and on until you get a good variety of food being tolerated.
We continued along this path until we had a good amount of usable food to blend. He now receives 180 ml blended food bolused 3 x day and 180 ml cow/breast milk mixed with yogurt and prunes 3 x day. He gets all of his milk needs during his 3 milk "bottles" and gets the grunt of his nutrition during his 3 "solid meals." Please be sure to consult a pediatrician or dietitian to make sure your child's milk need is being met. We fill this need with our "milk bottles" between solid meals. We also do not feed him over night, one more thing the blended food allowed us to cut out.
PLEASE comment (or e-mail) with questions! I want to be a resource to any momma's out there to give this thing a try. I promise you'll be glad you did!
Friday, June 14, 2013
|Dominic with his main squeeze, Bridget (a few months ago)|
It's official! July 1st we will be admitted to the hospital to try to get Dominic off of the vent for good! This process, from what I understand, takes about 2 weeks. But if it successful that will be 2 weeks well spent. We will wean 1 hour a day (we're only on 12 hours a day now) and go down until he is off completely. Once he is completely off (if he makes it that far) we will be kept in for a few more days to monitor how he is doing with no vent at all. We're keeping our fingers crossed.
A little while ago, after my mom and I finished making Dominic's blended food for the month, I said to her "I'm already mad about being admitted in the hospital." She reminded me not to start that way, to be positive and remember this admission is a good thing. "Don't be that mom," she said. To which I snarled my lip at her and reluctantly agreed. This is one of those times a person can either grow in virtue or fall into angry despair. It seems to be my style to do the latter, but I'm going to try for the former this time.
It's easy to get your panties in a wad in the hospital. That's right, I just said panties because this expression seems to get at the gist of the feeling. At first it's not that bad, then it gets annoying, then it's unbearable, then it just pisses you off. It is irritating dealing with all the various professionals who come in the room at any time they please. It's irritating gaining 10 pounds from eating hospital food for 2 weeks. It's exhausting sitting in that little room, doing nothing. BUT... it is much better than what some of the families on the floor are going through.
During our last admission I met a mom whose son was in the hospital going on 9 months for a traumatic brain injury. I used to treat these kids, with little sympathy for the plight of the family I might add. Sure I felt bad it happened, but I needed to get on with my day. I never ministered to these people, asking how I could help, or just sitting with them for a few minutes. I had a full case load and lots of kidd-o's to treat. It never occurred to me that my presence, un-scheduled, may be a big stressor to them. I didn't get what a beating being admitted really was. It was normal, everyday life to see these things. I would even comment on how the mom might be a little on edge and flustered. I wish I could slap my then-self and tell her all the secrets I know now.
So, here's to perspective. To remembering how good we have it. To allow myself to be stretched- after all it's not I that will do the work of growing in virtue... I just have to consent. And if you happen to get a worn-out, flustered, fed-up blog from me during these two weeks, feel free to slap me and remind me of that kid down the hall.