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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Tuesday, April 11, 2017

Lessons in Life Skills: Food Labels

Recently I've been reflecting back on how different life is now than it was when Raya was a baby or toddler. The "On This Day" feature of Facebook is somewhat of a mixed blessing. On one hand, it reminds me how quickly my babies (none of whom are babies anymore) are growing up. At the same time, it gives me an opportunity to remember more poignantly the way things used to be. I really can't do justice to some of the struggles of her earlier years other than to say it was hard in every facet of motherhood. Today, it reminded me that there was a whole year of Raya's infancy during which she ate and drank virtually nothing by mouth, and relied solely on nutrition and hydration through her feeding tube. It is still hard to wrap the mind around the idea of a child that young being so averse to taking in anything by mouth that they would choose not to, but having seen her experience so much vomiting and relentless episodes of violent retching, I could hardly blame her. It was uncharted territory for us as parents, so we relied on the guidance of therapists and doctors and did the best we could to support her through that time of her life and encourage whatever positive interaction with food that we could.

Fast forward to the present, and we have seen her do such a turnaround! She is interested in food and is no longer afraid of eating. She actually LIKES eating. She still has her reservations about going outside of the foods she's comfortable with, but she has a great therapist who helps her stretch her comfort zone and we have seen her expand the list of foods she's interested in so much over the past year. We are doing our best to take advantage of all the improvements she has made, and one of the ways we're doing that is by working on some life skills around food.

Life Skill #1: Reading nutrition labels for food allergies
Raya has several food allergies, which has always been one of the difficult things about finding more foods she can eat. Some of her reactions are delayed, so we may not know for a day or two that the food didn't agree with her. Other reactions are potentially life-threatening. Regardless of the potential reaction, it's not good for her to eat things she's allergic to. She's getting to an age where it's important for her to start learning to watch out for herself. Now that she can read, she needs to learn what to look for and where to find it, so I decided it was time for a lesson in food labels.

I had heard that a new health food store had opened up near us recently so I took her with me to check it out. I sometimes have good luck finding things she can eat at stores like that so it's fun to check every once in a while and see what new things I can find for her. Since she is allergic to wheat AND rice, it's tricky to find things that are free of both. We found the aisle with all the baking mixes in it and I taught her to look for the word "Ingredients" and then read through the list and look for wheat, rice, and milk. I actually felt bad for her because the reality is pretty harsh. Eeeeeeeerythaang that's gluten free has rice in it.
We did luck out though and found a pizza crust mix and a cinnamon roll mix that were mostly just tapioca flour with a couple seasonings. Thank heavens she's not allergic to eggs because that sort of thing just turns out better with real eggs than with egg replacer.

I also realized while we were there that she had never actually eaten Daiya cheese. I bought some once and she was so uninterested that it never made it out of the package and died a frosty death in the freezer. She thought the Daiya "cheddar style shreds" looked good so we bought some to go along with the pizza crust mix, and so that she could put cheese on her tacos and make nachos. She is pretty much always excited about everything and nothing, but oh my word was she ever excited. She bounced along through the whole store asking me if she could try everything. An hour or so and $25 later, we had some fun new things for her to try.

That night, we made pizza. I don't think I even took any pictures because things got busy once we got home, but for being a non-dairy, gluten free, rice free pizza, it turned out pretty good. She and the other dairy-allergic child in the house both tried it. It would be a little bit of a stretch to say that Raya liked it, but she didn't dislike it. She ate 7-10 bites (nibbles, whatever) and then she was too sleepy to keep eating and had kind of had enough. Sensory-wise, it was a pretty intense thing for her. She had not eaten pizza since she was 2 or 3, and she didn't really eat much of it that time. The crust was very chewy and she's really not used to that kind of texture, much less a chewy crust with sauce, ham, and "cheese" on it. She did really well though and I was proud of her for trying it and for taking that many bites.

I think it was the next day that I made the cinnamon roll mix. It worked surprisingly well and they were totally edible! She really liked them. The instructions were to bake them in a mini muffin tin, so they're small, and that's a good thing for her. She took one to school for lunch and ate almost the whole thing.

She also tried a couple new flavors of the brand of non-dairy yogurt she likes and we bought some non-dairy kefir. I was not a fan but I found one kid who would drink it so it won't go to waste. We also got some plantain chips for Raya to try. She did try one but was not impressed and I haven't gotten her to try another one.

The next thing she needs to learn is what alternative names her allergens might go by so she doesn't miss something on a label, like what the different names of all the tree nuts are. We had to teach her big brother that too, and it's something we're still working on. Nut allergies are scary, and that's why we feel that it is so important to arm them with the knowledge they need to protect themselves.

Sunday, April 2, 2017

Thriving


If I had to choose one word to describe Raya at this stage of her life, it would be THRIVING. In nearly every way, she is in the best condition of her entire life right now. Medically, she is more stable than ever. She is tolerating larger bolus feeds than ever over a shorter time period than ever. She is eating a wider variety of food than at any other point in her life in spite of her food allergies, and she's able to eat more food at a time than at any other point in her life. And more willing.

A few weeks ago, she told me one morning that her tummy had been hurting when the school nurse or her aide connect her for her second feed of the day and that she hadn't said anything to the nurse about it because the way her tummy felt confused her. We were confused too. She had a hard time describing it because it wasn't like any pain she's used to feeling, and the pain got better after the feed started, not worse, unlike when she's had trouble tolerating her first feed of the day. After a lot of discussion between myself, the school, and her feeding therapist, we realized what she was feeling wasn't pain, it was HUNGER! She had started taking sandwiches to school for lunch when we started trialing gluten free oats again, and was eating a larger amount of food at lunchtime than she normally does. I'm not exactly sure how that made a difference but for whatever reason, when she was taking those sandwiches and eating more food at lunch, she started feeling a more intense hunger sensation by late afternoon when it was time for the next tube feed. This was a huge milestone for her and we are so excited to see her making more of those connections about the sensations she's feeling. It is so awesome as a parent to see all of the years of hard work we have all done paying off this way. We know there's always a chance that her dysmotility and chronic pain can flare up and set her back, but as she gets older, she's learning to cope and her body seems to recover faster from those flare-ups. It gives us hope that there will be an end to tube feeding for her. She has a long way to go before the tube can come out but she gets closer with every bite she takes and we know that when she's ready, she will do it.

Aside from being in the best physical condition of her life, she's really blossoming academically and socially. After school one day this week, she handed me a paper with some standardized test results on it. After reading it 3 times to make sure I understood it correctly, I realized the paper was telling me that she scored in the 97th percentile for reading, and that she's reading 2 grade levels ahead. I knew she was a good reader but didn't realize she was doing THAT well! She is so smart and cheerful and witty and sweet and thoughtful and energetic and just plain awesome. To see how far she has come in all aspects of her life. She's getting better at articulating her needs and how she's feeling because she understands that people are better able to meet her needs when she uses her words. It is so exciting to see that emerging. She is such a joy to us. She's turning a corner in her life where she is starting to speak for herself, advocate for herself, and take ownership of her story, and we are so proud of her. I was in the health office at the school today and heard the school nurse and Raya's aide talking about a student named Sunshine. After they talked for a minute, the nurse looked at me and said, "Does that work for you?" I must have had a confused look on my face because she said, "We're talking about Raya. We call her Sunshine." And that sums her up perfectly. She is Raya Sunshine.

Thursday, February 23, 2017

A post-CNW message for my fellow tubie mamas


This past weekend, I had the privilege to attend Clinical Nutrition Week in Orlando, Florida. The conference is put on by ASPEN (American Society of Parenteral and Enteral Nutrition). This was my 4th time attending as an exhibitor with Feeding Tube Awareness Foundation, alongside my friend and colleague and the founder of Feeding Tube Awareness Foundation, Traci. This one was extra special for me because I had the great honor of receiving the Lyn Howard Nutrition Support Consumer Advocacy Award. Of all the things I've done in my life, advocating for my daughter, our family, and others like us has been one of the most rewarding. I am grateful to be in a place where I can use my experiences to help others.

Speaking in front of a LOT of people very early in the morning

Me with the one and only Lyn Howard

When we attend conferences as exhibitors, we have a booth in the exhibit hall where those attending the conference can stop by and learn about our organization and what we do. Here's our booth from CNW:





And this is our friend Biff, whom we've had the pleasure of being stared at by at other conferences as well:
(I still think he looks more like a Desmond than a Biff.)

I realized this weekend as I was talking with hundreds of clinicians (GI doctors, surgeons, nurses, dietitians, and pharmacists) and industry professionals about the Feeding Tube Awareness Foundation and what we do, that most people only know about a small portion of what we do. With over 48,000 followers, our Facebook page is pretty well-known at this point, as is our website. Our facebook page is a place where parents can go to connect with other parents, ask questions, and get feedback about all things tube-related. The website contains in-depth information about all aspects of life with a child who is tube fed, and includes links to our educational materials, tubie love gear, and all sorts of helpful resources. All of this serves the primary function of supporting families, but that is only part of what we do. We have also worked hard behind the scenes to develop relationships with clinicians and industry professionals so that we can help them better understand the needs of the families they work with. For us, that is what Clinical Nutrition Week and the other conferences we attend are all about.

While at CNW, we had many opportunities to meet with people in every avenue of the tube feeding world. We talked with formula/medical food manufacturers, engineers, sales reps, home supply companies, physicians, nurses, dietitians, pharmacists, product development specialists, researchers, and everyone in between. We were also invited to give a 45 minute dinner presentation to a group of about 35 clinicians and industry professionals with one of the major formula manufacturers about the parent perspective on tube feeding. With each conversation we have had, not just at this conference but at all the conferences we attend, I have felt that there is a disconnect between the people who make, distribute, and sell the supplies that we depend on to keep our children alive and thriving. I have also felt from these industry professionals a great desire to eliminate that disconnect. The companies they work for function to make a profit. They HAVE to in order to stay in business and continue producing the things we depend on. However, as I have met with the individuals who represent the companies, I have felt the passion they have for what they do. They may not have the personal experience of living with a child who is tube fed, but they DO understand that the end users of the products they are innovating/creating/manufacturing/distributing/selling are real people with real lives, and that we depend on them to do their jobs so that we can do ours. They understand that even seemingly small disruptions can have disastrous results for us. They WANT to know how what they're doing affects families and how they can do better.

Likewise, I think there is a disconnect between us as end users of the products and services and the people on the other end of those products and services. We get our monthly supply shipments and don't think twice about how those supplies got to us. That is why I felt the need to write this post and express to other moms like me that there ARE real people on the other end of the supplies and services you depend on to feed your child! These people have families too. At the end of the day, they want what they do to be meaningful. They want to hear from us, the consumers, in a constructive way so that they can make whatever improvements are possible to the products and services we all depend on, and improve quality of life for our children and our families. In the 4 years that we have been attending conferences and cultivating these relationships, we have found that companies who deal with tube feeding are becoming increasingly receptive to consumer feedback. They can't fix what they don't know about, so they need to hear what our pain points are and what might help those things. When they know that information, they can innovate on their end to improve their products or services and better meet our needs. They do care, and they are listening!

Tuesday, December 6, 2016

Repost from December 2011: Grateful for c. Diff and Dirty Laundry

Facebook reminded me about this post from my family blog today. I had forgotten some of the details about the day, like how it ended, and all I really remembered was cleaning up the vomit. I'm glad I wrote the rest of it down because it's pretty warm and fuzzy at the end. I'm also glad life is different now than it was then because that was hard in a different way than the hard things we're dealing with now. Anyway, I thought this would be worth sharing again since I don't know if I ever posted it here.


Yes, that's right. Today, I found a reason to be grateful for c. diff (which is a terrible gastrointestinal illness that causes diarrhea, is highly contagious, and is not killed by hand sanitizer) AND dirty laundry. Let me back up a little.
Last night, I went to bed (later than I should have) with a tension headache. The kind that starts in between your shoulder blades, crawls up your neck, and makes you feel like someone has taken a chisel to the back of your head. I took something for it before I went to bed, but when I was awakened at 6:15 by the usual fighting over oatmeal packets and an argument about how many years Kaida will be when she goes to school, the headache was still there. After the typical routine of trying to quietly answer questions like, "Mommy, can I open another box of cereal?" and "Mommy, I don't like banana oatmeal, can't I open a new box and have strawberry instead?" and then shoo the children (who are seemingly unable to whisper) out of my room, Raya's head popped up over the side of the crib earlier than I was ready for.
I dragged myself out of bed and changed Raya's diaper and then went out into the living room to find Ashtyn's pillow and blanket and a giant mixing bowl on the floor. I asked her if she was sick and she said, "I threw up at 1:29 but I'm fine now." I asked, "Did you throw up IN the toilet?" and she said she had. She said she tried to wake me up but I wouldn't wake up so she made herself a bed on the floor. I told the kids to finish packing their lunches and get dressed, which took much longer than it should have but we made it out the door in time and headed off to school.
After I dropped them off, I remembered that last night I had been downloading videos off of the video camera so we could erase the memory so I went upstairs to check on it. Someone had left the bathroom light on and as I leaned around the corner to turn off the light, I was simultaneously blown away by the sight and smell of the 7 hour old vomit that Ashtyn had left all over the bathroom without mentioning it to me. I turned off the light, turned on the fan, and closed the door to allow myself some time to prep for the clean-up.
Remembering why I came upstairs in the first place, I sat down at the computer and checked my email. There was one from the credit monitoring website I use saying that my credit score had been updated so I logged in and checked it only to find that it had dropped by a whopping 64 points. To make matters worse, I also saw that the reason for the sudden drop was a mortgage that was paid in full on the house we sold in March that was now showing up on our credit report under a new mortgage company even though I had been assured that the statements we've been getting since August are a mistake that happened when their company took over loans from our mortgage company and that it wasn't being reported to the credit agency. Obviously it WAS reported, and so for the 12th or so time in the last 3 months, I called the mortgage company. After speaking to 6 different people (most of whom knew NOTHING) over the duration of about 90 minutes explaining to every single one of them that because of a clerical error, their company was screwing up my credit score, I was finally told that NOW our account is showing a zero balance and that they are investigating as to why it was erroneously reported to the credit bureaus even though it should have been. She said they'll see what they can do to get my credit score corrected too. I'll believe it when I have proof in writing!
After that lovely phone call, I remembered that there were 2 little girls running amok downstairs so I went down and found this:
And instead of getting upset with her, my first thought was, "Wow, she's not W-sitting!" (you know, the way little kids sit with their feet out to the sides that makes your knees hurt just looking at them) She has a hard time sitting with her legs tucked under her for very long at a time so her PT will be proud. :) THEN I took away all the candy that she was having fun unwrapping but not eating and made her spit out the giant wad of gum that she was practicing her chewing skills with. (her feeding therapists will be proud too :) I got her down and put the chair back, gave her the morning doses of her meds, and collected my supplies to go sanitize the bathroom upstairs. When I walked into my bathroom to get the cleaning supplies out, I discovered a clogged toilet with a whole other kind of smelly mess in it that had to be unclogged before I could start on the vomit. THEN I went upstairs to clean up the bathroom.
THIS is why I'm grateful for c. diff and dirty laundry:

I couldn't clean the mess up with one hand plugging my nose so I got a dirty long sleeved shirt out that was stuffed in Cole's shirt drawer and tied it around my face. It smelled like a kid that's been playing outside for a while but that was a heck of a lot better than what the bathroom smelled like. Then I put on my blue nitrile gloves that were left over from when Raya came home from the hospital last year with c. diff and I wore gloves to change her diaper until it was gone, and got to work. Had it not been for that nasty 6 week battle with c. diff, I wouldn't have had any gloves to protect me from the yuck. Since Cole stuffed his dirty shirt in the drawer instead of putting it in the laundry room to get washed, I had a gas mask to wear while I cleaned up puke. With that shirt on my face, I couldn't smell a thing but dirty little boy which was MUCH more pleasant than 9 hour old vomit. And as for the gloves, let's just say they prevented me from having to think too much about what I was scraping off the floor and every surface and crevice of the toilet (did I mention we had breakfast for dinner last night? eggs.). All the while, in my head I was just DARING the school nurse to call me and say that Ashtyn wasn't feeling well & needed me to come get her. I was all ready to tell the nurse, "You tell Ashtyn that when I'm done scraping her vomit that she didn't bother to tell me about before she went to school off of every surface in the bathroom, THEN I'll come and get her!!" But she never called and Ashtyn has been feeling fine ever since she threw up.
When all had been cleaned & cloroxed, I returned downstairs to find Raya perched on the arm of the couch with her feet dangling in the branches of the Christmas tree playing with ornaments. Kaida ran over and held up the bottom half of a broken ornament and said, "Mommy, Raya broke your kitty!" But Kaida can't say her "K" sounds. She says a "T" sound instead, so "kitty" doesn't come out the same when Kaida says it. I don't want to put that word on my blog but you can fill in the blank. At least that was good for a laugh. :) And that, my friends, was all before 10:30 a.m. Oh, and when Raya says "stomach" it sounds like she's saying "dammit" so we are frequently telling Kaida to say "cat" instead of "kitty" and Raya to say "tummy" instead of "stomach". With a straight face.
After plucking Raya out of the Christmas tree, I told the girls that we were getting the "H" out of the house for a while and going to the store. Kaida thought I meant the grocery store so she started to throw a fit because she hates the grocery store. And pretty much every kind of store. I got out a new pump bag for Raya's feeding pump and filled it up only to discover while priming the line, that there was a tiny pinhole in the bag which squirted formula up the sleeve of my shirt and jacket. So then I had to get another new bag, pour the formula out of the holy bag into the unholy bag, change my shirt and jacket, and THEN finish getting the feed ready. I finally got Raya fed and dressed and at 11:15 we were out the door. Raya's naptime is 10:30 but I HAD to get out of the house so we went anyway.
In the 1.5 mile drive between our house and the craft store, I got stuck behind or cut off by every elderly snowbird in the area, including one person who pulled out of the craft store parking lot in front of me into the left turn lane that I was trying to turn INTO the parking lot from, and then the guy got mad at ME because he couldn't see past me to turn out into the lane of traffic. Idiot.
Once we got inside the store, I didn't want Kaida to see the things I was buying so I was holding everything in one hand and trying to push the cart with the other hand while Raya cried, screamed, and yelled at me for not letting her hold things (which she was repeatedly dropping on the floor). One time I was looking at something and she accidentally hit her cast on the side of the shopping cart. When she realized that it made a loud noise, she started deliberately banging it against the cart just to "get" me. Then 2 minutes later she said, "Arm hurt!" Yeah, no sympathy on that one, kid.
All the way through the store, Raya was crying and screaming and every time we turned a corner, everybody turned to stare at us. I ignored the screaming and the stares, got what I needed, and went to the checkstand to pay. Raya stopped crying for a minute but there was another kid in line behind us that was having an even bigger screaming fit than she had been. The lady a couple people ahead of me in line started talking to the cashier and with a snide look on her face said, "Sheesh, somebody's not happy. Sounds like it's naptime. Why do parents even bring their kids to stores when it's naptime??" AAAAAAAAHHHHH!!! I wanted to THROW my SHOE at her! Really, lady?!? Do you not get it that sometimes things have to be done whether your child is crying or not and that moms don't enjoy listening to their kid scream any more than anybody else does?? Lucky for her there was another customer in between us or else all of the pent up frustrations of my morning would have been unleashed on her judgemental self.
While the next lady was paying for her things, Kaida did something to hurt Raya's broken arm so she started screaming again. I paid for my things and then when I looked at her again, her face was covered in awful-looking red spots:
I dragged the girls out to the car and by the time we had gotten out of the parking lot, Raya was almost asleep. It was noon and I was starving so we drove through Chick-fil-a to use a coupon for free food but we had to wait behind 6 other people in line, so by the time we got our food, we'd been in the drive-thru for 20 minutes. We went home and I put Raya in bed without even taking her jacket off because I didn't want to risk waking her up, and then Kaida & I ate our food while we watched "I Shouldn't Be Alive" on Netflix.
After we ate, I decided that I'd accomplished enough before noon to merit taking the afternoon off, if you will, so I snuggled up on the couch with my big fuzzy blanket and watched another episode of the show. Then I fell asleep and had a nice little catnap before going to pick up the other kids. I had planned on letting the kids stay & play for a few minutes so I could talk to my friend but then all hell kind of broke loose and we both herded kids back to the cars & went home instead.
As we were getting out of the car, a sales lady started walking towards us from the neighbor's house and started talking to my kids, which irritated me. I had my hands totally full (purse, feeding pump, Raya, mail, keys) and this woman starts yapping at me about how I clean spills out of my carpet, etc. I just stood there and stared at her for a second while trying not to drop anything and trying to keep an eye on my other 3 kids who were running around and asking me if they could have a snack. Couldn't she see that I was BUSY?? I politely told her that it was not a good time for me and went in the house.
While I was trying to calm the chaos of homework and figure out what people were going to eat for dinner, I looked over to see why the kids weren't putting the toys away and what the fighting was about and saw this:
In case you can't tell, Raya has taken one of the toy baskets off the shelf and crawled in the cubby so she could reach down behind the shelves and plug in the Christmas lights. And she's grinning at me the whole time, of course.
Then, as I was going through the mail, I came across a handwritten envelope. It was a very sweet thank you note that someone from church had sent me. She was thanking me for the lesson I taught last week at church (which I felt very self-conscious about afterward) and for a minute, I forgot all about my less-than-stellar day and was filled with gratitude for this sweet sister who, despite the difficulties in her own life, took the time to actually write me a note and mail it to me. (I'd like to say it made me forget all the yucky events of the day but it will take a couple more days to get that vomit out of my head.) But really, it was one small & simple act of kindness and it totally made my day. Moral of the very long story: 1. Blessings can come from unexpected places (i.e. leftover c. diff gloves and dirty shirt stuffed in a drawer) and 2. Do nice things for people because you never know what nastiness they've had to clean up that morning and your act of kindness might completely change someone's day! :)

Friday, November 25, 2016

Black Friday Deal on Instant Pot!!

Instant Pot!!

Okay, people, if you don't own an electric pressure cooker yet, now is the time to get one! This is my most favorite small kitchen appliance! We have adapted most of our favorite recipes so they can be made in a fraction of the time in this beautiful little piece of stainless steel and plastic.

There is nobody paying me to say this, I just have found it really, really useful! I can make large batches of things that my food allergic kids like, and then freeze them in portion sizes. I haven't tried making bone broth yet but that is on my list of things to do this weekend! Bone broth is so good for the gut, especially when you have a compromised gut like many kids who are on nutrition support do, and when you can make it yourself in about 30 minutes, why not?!

Amazon is having a SMOKING deal on the 6 quart Instant Pot for Black Friday. For today, the price is cut from the usual $129 down to $68! It really is an amazing deal so if you've considered getting one, now is the time! Click here to get this deal!



Wednesday, October 12, 2016

ENFit is here!

After years of waiting, stressing, and anticipating, ENFit is FINALLY rolling out! Yes, I used an exclamation point, and yes I meant it in a happy way. I can't be the only one that's tired of adapters, right?? I first heard of ENFit in early 2013 and at that point, it was supposed to roll out in 2014. Here we are in the 4th quarter of 2016 and we are FINALLY getting ENFit supplies for both ends of the connection, and all I have to say is it's about time!

A lot of people are still unsure of what ENFit is and why the change is happening. For more about that, you can read here, here, and here. The condensed version is that there have been serious injuries and deaths due to medical misconnections, so all medical device connections are changing in phases to be incompatible with each other. ENFit is the name of the enteral (feeding tube) connection. The process started 10 years ago, and although this {ridiculously long} transition phase is a pain in the rear, the end goal is safer connections for everyone.

After many, many delays, ENFit extension sets are now making their way through the supply chain, as are the updated Moog EnteraLite Infinity pump bags. The pump bags had been released in 2014 but there were some issues with the purple ENFit connector cracking, so Moog temporarily went back to the red Christmas tree connectors while they reworked their ENFit connectors to address the problems. Now they're back, and with a slightly different design and (hopefully) improved material that will not crack.

So far, extensions from Halyard and AMT are the only ones I have personally tried out. I had the opportunity to try Halyard's ENFit extension sets back in May. While I do still worry a little bit about the second port being able to pop open and I think I'd feel more comfortable with a cap that twists on, I really liked the ENFit-to-ENFit connection. We used the same extension for 10 days and did not have any med port accidents, accidental dislodgements of any kind, no disconnections between the pump bag and the extension, and really no problems at all with it. Being realistic, it takes more than 10 days to have problems come up, but I felt pretty optimistic about ENFit connections between feeding pumps and extensions after testing out the MicKey ENFit extension. Here's a picture of the ENFit end:


We were surprised (mostly in a good way) to have these new AMT hybrid ENFit extensions show up in our supply delivery this month, along with the new ENFit Moog Infinity bags. They are a hybrid extension, meaning they have an ENFit port and a non-ENFit port. There has been some confusion as people have started receiving these extensions. The white piece where the med port used to be is attached and is not removable. That part is the ENFit port.
I saw these hybrid extensions at a conference I attended in May and was a little confused as to why they would make the med port ENFit rather than the feed port since ENFit pump bags were available already but syringes were not, so I asked their reps. I don't remember the exact details but it has to do with regulations that went into place in July. The manufacturer wanted to provide people with a combination extension but in order to be in compliance with regulations, this was the way they had to do it.

Here is how the hybrid extension works with ENFit Moog pump bags (and Kangaroo Joey pump bags also, I just don't have one of those):
We (Feeding Tube Awareness) still recommend tightening the connection to fingertip tight and not twisting harder than that to avoid damaging either part of the connection, but I noticed that the design changes Moog made to the purple connector makes it so you can only twist it so far. Their previous design made it really easy to overtighten and crack the connector, but this one doesn't seem to work that way.


Syringes and Adapters
AMT has put a lot of effort into helping consumers through the ENFit transition. They have a whole line of adapters available to help us all use the supplies we have stockpiled, and to be able to use our current supplies with the new supplies we are receiving from our supply companies while the transition rolls out. {and no, they're not paying me to say that, I just genuinely appreciate the efforts that AMT makes as a company to serve the needs of consumers}

Since ENFit syringes are not yet being distributed en masse, AMT is including a slip tip syringe adapter with the hybrid extension sets. This is what it looks like:

To use the adapter, you twist the adapter into the ENFit port on the extension until it is "fingertip tight" and then give meds as usual. Simple enough, right?

If the slip tip syringe you're using fits into the syringe adapter, then yes, it is that simple. 

Buuuuut some of our slip tip syringes don't fit. Like that little brown 1 ml syringe on the right. It is the exact same diameter as the adapter and it does not fit. Nor do these 10 ml oral syringes that our pharmacy gives us, which I use for water flushes after meds sometimes. 

So what's a girl to do when the syringes don't fit the adapters?? Or if the adapters crack, which we have been hearing reports of on Feeding Tube Awareness. (If you have an adapter crack, please contact AMT's customer service department and let them know. They are very responsive to consumer feedback and they are aware of this problem and want to fix it!)

Our solution is to just not use the adapter. It so happens that 1 ml, 3 ml, and oral tip syringes fit directly into the feed port, as do cath tip syringes. We've actually been giving all our meds this way for a couple years now because we were tired of dealing with med ports.

I didn't realize the oral tip syringes fit directly into the feed ports until we were inpatient once and I saw a nurse give one of the meds that way. The tip of an oral syringe is longer than the tip of a slip tip syringe, so it actually does fit snugly into the feed port.


I know my opinion will not be popular with some but I really am happy to have ENFit extension sets and pump bags so we don't have to use adapters for that connection anymore. Since we're using the feed port to do meds anyway and now we're using the med port to feed through, giving meds is quick & easy.
For doses that are 1 ml or less, we use 1 ml syringe. For doses from 1-3 ml, we use a 3 ml syringe, and anything more than 3 ml, we use a 10 ml oral tip syringe. We also give things that have to be mixed with water, like powdered PPI packets and probiotic powder, so we use a regular cath tip syringe for those. This may not work for everyone but it has made giving meds much easier for us while we wait for ENFit syringes to reach the supply chain, and hopefully it will help someone else too!

(**Note** I don't have any information about the timeline for ENFit syringes, or how they will be distributed but if and when I hear more, I will share that information as well.)

Monday, May 30, 2016

Kindergarten: DONE!

It is unreal to me that another school year has come and gone for my awesome kiddos, and that kindergarten is already over for Raya! A lot has been asked of this crew in the last 10 months. Huge things that have meant making new sacrifices and taking on new responsibilities. They've risen to the occasion and I think we've had a great year! {read: we friggin' survived!} 


I can't believe how much they've all grown up this year! And how trashed their shoes are. Haha. I'm so proud of them and we are ready to have a fun summer!

Monday, May 23, 2016

Because of her feeding tube


There was a time in this girl's life when we wondered what the future held for her. We wondered if she would ever be healthy enough to live a normal life. If she would go through her whole childhood feeling as sick as she did during her first 18 months. How malnutrition would affect her development. Every now and then, I catch myself watching her in amazement. She has come so far and overcome so much! A lot of things are still not easy for her but she does them anyway. 
In my role with the Feeding Tube Awareness Foundation, I talk to parents all the time who are hesitant to go forward with tube feeding. They're afraid that using a feeding tube means they're giving up on their child, or that they're doing something permanent to their child if they consent to a G tube. I used to be that parent, and I wish I could help every other parent facing that decision to see that the most important thing is that their child is receiving adequate nutrition, and that for some kids, a feeding tube is the best way to accomplish that. A feeding tube is not the end of the world! For so many kids like mine, life BEGINS when they start getting the nutrition their bodies need! Watching her rake up hedge trimmings this weekend, I couldn't help but be in awe once again at the full and wonderful life she's living because of a simple little feeding tube.

Wednesday, February 10, 2016

FTAW 2016- Development: The Power of Tube Feeding



Today's topic:
Development: The Power of Tube Feeding
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?



Development is not the first thing that comes to mind when the topic of tube feeding is discussed. The first thing that comes to mind is survival. Ironically, it is the act of living in survival mode that inhibits developmental progress for many children. I remember sitting in a class in high school and listening to the teacher lecture about Maslow's Hierarchy of Needs. It looks something like this:

I can still remember the teacher talking about the most basic, primal human needs. The bottom of the pyramid contained physiological needs like food, water, sleep, breathing, and shelter. She explained that once those needs are met, the individual moves up to the next tier of the hierarchy to the safety and security needs, such as employment, financial stability, health, and property. As the needs in each tier are fulfilled, the individual continues to move up to the higher-order needs. If the most basic needs are not being met, it is impossible for the individual to work on higher-order needs. How does this translate over to a tube fed infant? Development. 

When a child is facing a medical crisis (or multiple medical crises), the focus MUST be on survival. At that point, keeping the child alive is the priority, and often that comes at the cost of other higher-order needs or skills. There are many children who are tube fed, not because of a feeding disorder or a problem with their digestive system, but out of necessity due to other medical problems. For example, children with congenital heart defects are often given feeding tubes, either temporarily or longer term, because eating consumes too many calories, they lack the strength & energy to eat enough to grow, they have a higher caloric need than they are able to take in orally, or they need additional calories to help them reach the weight they have to reach to have open heart surgery. Kids who are intubated tend to develop oral aversions that hinder their ability or desire to eat by mouth. Obviously, all of these interventions are critical to their survival, but often come at the cost of being able to eat and drink orally enough to sustain their own lives.

Looking back at Raya's experience as an infant, I can see where we had to sacrifice certain developmental needs for the greater good of keeping her body nourished. It wasn't as drastic for us as it is for many of our cardiac friends, but we still had to sacrifice certain things in the name of survival. I think the most obvious example is that when it was decided that she was at risk of primary and secondary aspiration, her GI doctor and I agreed that it was in her best interest to stop oral feeds completely until she had a swallow study done. Allowing her to continue drinking formula by mouth when we suspected that she was not swallowing safely could have resulted in life-threatening aspiration, so the decision was made for her safety, but with that decision came the cost of oral motor skills and the natural progression of feeding skill development. At the age that most infants are starting to eat solid foods, we stopped feeding her by mouth completely. That meant that not only was she not maintaining the skills of sucking and swallowing that she already had (as lacking as they may have been) but she was also not continuing on with the next set of skills that come with learning to eat solid food from a spoon. Survival in the form of preventing dangerous aspiration was necessary, but halted that development.

Somewhere around 14-16 months, Raya inched her way out of survival mode. The switch from a G tube to a GJ tube allowed her to keep enough calories and nutrition in to actually start growing and absorbing the fats and nutrients that she was struggling to absorb with the NG and G tubes. As the vomiting slowed and then stopped, she blossomed right before our eyes. It was an amazing transformation.



The difference was that tube feeding had allowed us to optimize her health, and that allowed her to move out of survival mode and start working her way up the hierarchy. When we were constantly having to put out fires with her medical needs, we did not have the luxury of focusing much of our time and energy into working on her developmental delays. Those things just had to fall to the bottom of the priority list while we tried to keep her medically stable. Once her body was no longer in a constant state of stress, she was able to start working on those areas of development where she was struggling. All of that was made possible because of tube feeding.

Now that she is older, the feeding tube still supports her development through nutrition, but there is one other important way that it supports her. The feeding tube takes the pressure off of her. I have come to the painful realization that my daughter does not have a normal relationship with food. I mean yeah, that's obvious, but in a very real, psychological way, she does not have the bond with food that typically developing children have. Eating requires not only a great deal of physical effort, but also a great deal of mental and emotional energy for her. When the demands that eating places on her are just too much for her, being able to rely on the tube to get her by relieves the pressure that she is under. Now that she's in kindergarten, there are a lot of demands on her limited attention span. The tube is allowing her to have a balance in still working toward being an oral eater, and falling back on the tube for support so that she can focus on what she's learning.

I know I've shared this video a lot, but I think it really illustrates what my ramblings are getting at. We started with a baby who was to busy trying to just survive, to ever attempt to overcome some of the developmental struggles she was facing. Heck, we didn't even RECOGNIZE a lot of what she was struggling with because we were so busy trying to keep her from puking her little guts out! Anyway, here's the video that still makes me cry every time I watch it.






This week is also Congenital Heart Defect Awareness Week! When I first started searching out other parents of tube fed kids online, it was the heart moms that I gravitated toward. There were so many awesome heart mom blogs, and so many of those kiddos had feeding tubes. Over the years, I have come to know and love so many CHD warriors and their warrior mamas, We ♥ tubies and we ♥ the ♥ kiddos!

Tuesday, February 9, 2016

FTAW 2016- Nutrition: The Power of Tube Feeding


Today's Topic:
Nutrition: The Power of Tube Feeding
There are long-term consequences to malnutrition. For some people, there wouldn't be life without tube feeding, but for others, they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren't able to eat enough on their own to get the nutrition they need.

Nutrition can be a touchy subject among tube feeding families. In the tube feeding world, I think many of us have different feelings toward nutrition in its various forms at different points in the tube feeding journey. Before Raya was even born, I planned on breastfeeding her just like I had done with her 3 older siblings. It wasn't that I had anything against formula, I just wanted to breastfeed. (and formula is 'spensive) One of the hardest things that happened in the beginning of all this was being told that my breast milk was literally harming my daughter and that I had to stop giving it to her. For a while, I kept pumping and freezing the milk and clung to the hope that we would be able to get her back on breast milk and I could go back to breastfeeding her. I did try giving her breast milk through her feeding tube a couple times. I did not go well. I had to accept that what I planned for her and for us was not going to happen, and I had to let go of that. It may seem silly and be difficult to understand, but I went through a kind of grieving process over the loss of, not only breastfeeding her, but also the loss of having control over how I nourished my child. I had never experienced anything like that before. 


The first couple of weeks after the tube went in, we played a guessing game of sorts as we tried to find a formula that she could keep down, that would help her gain weight, and that she would drink by mouth. Ultimately, we found out that when a baby is in dire straits and facing malnutrition, you sometimes have to do some bargaining and accept the lesser of evils. The first formula we tried was horrid. Even the name sounded unappetizing. Pregestimil. Blech. I did not blame her one little bit for refusing to drink it. I'm sure it tasted horrible. It smelled horrible going down, and it smelled horrible when it came back out. And it did come back out. And then we ended up with another unpleasant side effect: blood in the stool and constipation. At that point, we had to switch to something else. The next one was an elemental formula called Neocate, that had the proteins broken completely down into amino acids. That one was definitely better than the Pregestimil. At least when she vomited, it just smelled like French fries. She did drink some of her formula by mouth early on. She just couldn't drink enough to sustain herself. Trying to get her to drink her formula was exhausting. Keeping up a feeding regimen of every 3 hours, 8 times in a 24 hour period with a baby who had little to no desire to drink anything was hellish. I tried the best I could though. I set alarms on my phone to wake me up every 3 hours, and I woke her up to feed her like they told me to. I could only do that for so long before I just couldn't keep up anymore. We had to let the tube do more of the work for her because she just couldn't do it herself, and I couldn't make her.


At some point, I came to terms with formula. I was still sad that I had been robbed of being able to feed her the way I wanted to, but as I saw her start to turn a corner and gain weight again, I couldn't help but marvel at the fact that something existed that could replace breast milk. I remember looking at the can and thinking how amazing it was that science could create something that replicated the nutrition found in breast milk, and that it could be done in a way that would help children with mysterious medical conditions like Raya to still grow and thrive when they would have otherwise slowly starved. 


As time went on and Raya became more stable, we dabbled in baby food. That did not go well. Exhibit A:



During a hospital admission shortly before her first birthday, she was switched from Neocate Infant to Neocate Jr. According to the label on the can, Neocate Jr would be nutritionally complete for her for the rest of her childhood. Hmmm... I wasn't sure how I felt about that. I must have been very out of touch with the medical world because even though I knew of people who had feeding tubes, it was hard to wrap my head around the concept of a child growing up to adulthood solely on nutrition provided by powdered formula from a can. With that realization came another twinge of sadness at the idea that Raya could potentially be one of those children. 


I knew that we had no way of knowing exactly what the future held for Raya, and I knew that for the time being, formula was doing the trick. She was still a sick little girl and we didn't know why (and no, the formula was not making her sick), but with the help of the nutrition provided to her by the formula, she was still growing and progressing developmentally. Even so, I still felt like she was missing out on something because of the lack of food in her life. Completely apart from the actual experience of eating food, I felt like her body was missing out on the health benefits of having food. With the blessing of her wonderful GI doctor, we started doing small amounts of pureed food through her tube. I felt like if we ever wanted her body to be able to digest enough food to not need the feeding tube anymore, we should give it some practice, and that was a great way to see how her body handled foods that she wasn't quite ready to eat yet. 


As time went on and things calmed down a bit more for her, she did start to eat food. She even got to a point where she was consistently eating 200-300 calories a day for a while. (until she got a sinus infection and didn't take a bite of anything for a month, but that's a story for another day) However, with more food exposure came the realization that Raya had food allergies. In retrospect, it explained so many things. Even the exorcist vomiting the weekend before she was admitted to the hospital for the first time. We had been adding rice cereal to her milk, as directed by her GI doctor, and then 2 1/2 years later, we found out she is allergic to rice. It turned out she was allergic to pretty much everything she had decided she liked to eat. We had to start over from scratch, and with some difficult dietary restrictions. 


Ugh. Dietary restrictions. I get so frustrated by the combination of food allergies and intolerances in this household. There are only 2 of us who don't have any foods that have to be avoided for one reason or another. As I was walking through the grocery store last night, I caught myself thinking of a meal that sounded good that I wanted to make but then was suddenly yanked back to reality with the realization that I cannot feed that meal to at least 3 of us, and it can't be modified to accommodate the allergies. That thought was followed by a twinge of sadness and a wish that we could just have a one day pass from all of the food restrictions and have everybody eat the same things. What does all that have to do with nutrition? I suppose it just illustrates how difficult it can be to find "perfect" nutrition for a medically complex child. I don't love that my child subsists almost completely on formula, however I'm extremely grateful that it is POSSIBLE for her to grow and thrive and be healthy on 100% formula. I mean, LOOK at this girl!

This one didn't make the Christmas card.

But what else is there aside from traditional commercial formulas? FOOD! Yes, food. As in, regular old food, thrown in a high-powered commercial-grade blender, and pureed until it's smooth enough to flow through a little bitty G tube. For some, blenderized food is a fantastic option but for one reason or another, the actual preparation is not do-able. For those people, there are some relatively new and very exciting products on the market in the form of commercially prepared blenderized food. I know of two companies whose products are currently available and gaining more and more insurance coverage and distribution availability on a regular basis. One is Functional Formularies (makers of Liquid Hope and other products), and the other is Real Food Blends. I don't know quite as much about Liquid Hope because it will never be an option for Raya since it contains some ingredients she is allergic to, but I have heard from many who use it and love it. It was created with adults in mind, so it is more nutritionally appropriate for adults, but the company did just announce a pediatric product (which Raya is also allergic to). Real Food Blends was formulated with children in mind, and offers a variety of "meals". (and there's one Raya isn't allergic to. yay!)  Both companies are doing great work on behalf of those who want options other than traditional formula. 


I have seen a lot of heated debates in the online tube feeding community over the topic of nutrition. When the debates start, they often take a "mommy wars" tone. As parents, we are passionate about our children, and that often leads to a "my way is the best way" attitude. It makes me sad to see these debates, and also to see "formula shaming," because when it comes down to it, there is no one way to feed a child who is tube fed. According to the Feeding Tube Awareness Foundation, there are literally HUNDREDS of medical conditions that can lead to tube feeding. There cannot possibly be one single method that would encompass all of those conditions and meet the needs of every single one of the hundreds of thousands of people who are tube fed, just like there cannot possibly be one diet that meets the needs of all people who eat by mouth! When you think of it that way, it's a little absurd. Each of us must do what it takes to nourish our children. For some, formula is literally the only way to do that. For others, there are options either in place of or in addition to formula. ALL of these options are right, but not all of them are right for each individual. No one should ever be made to feel guilty about what they choose (or are forced to) feed their tube fed child. The important thing is that feeding tubes and formulas of all kinds allow those who rely on feeding tubes to have the nourishment they need. 
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