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**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, 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. 

Monday, February 8, 2016

FTA Week 2016- Energy: The Power of Tube Feeding

Today's FTA Week topic is:

Energy: The Power of Tube Feeding
Post your story or pictures of you or your child thriving with energy as a result of tube feeding. Or post before and after pictures to show how much tube feeding has improved you or your child's energy.

I've seen a lot of really incredible before and after pictures over the years that I've worked with the Feeding Tube Awareness Foundation. We've seen so many children who have struggled for months or even years to keep from losing weight that they can't afford to lose. They are skin and bones. Shadows of the children they used to be, and a far cry from their peers. Then they get feeding tubes and the life is restored to them. They gain weight. They grow. They run and play and do all the things they didn't have the energy to do before.

Our before and after pictures aren't quite like that, but they are incredible nonetheless. This is our before:
3 weeks old

4 weeks old, 7 lbs 8 oz and spitting up everything
The nightly routine of "do whatever it takes to get her comfortable 
When I think about Raya's "before," this is the picture that comes to mind. A pale, skinny, 8 pound 2 month old who cried for hours on end no matter what we did for her, spit up and projectile vomited no matter what we did for her, was starting to refuse to eat, and stopped gaining weight. I still remember laying her on a blanket on my bed and taking pictures of her after her 2 month well-check. At the time, all I saw was my baby. Now, I look at it and see a baby that needed help.
January 2010

I suppose this could be considered our "after."

Now we have a beautiful, vivacious 6 year old who is loving kindergarten, enjoys playing with her friends and her siblings, works hard in her therapies, pushes through her daily struggles with a {mostly} happy spirit, and adds a huge and unique energy to our family and home. Raya has a presence that cannot be ignored.

We can't fully appreciate the difference between before and after without looking at the "during" though. We went from a baby who was weak and becoming malnourished, to a baby who had the strength to meet most of her developmental milestones in a normal time frame because of the nutrition she was receiving through the tube.

She learned to sit up:

She learned to crawl:
Trying to crawl her NG tube out of her nose on the day of her G tube surgery
She learned to pull herself to stand:

She learned to walk:

She learned to climb on playground equipment:

She learned how to climb out of her crib:

She learned to jump:

She started preschool:

She learned to ride a tricycle:

She learned how to run:

She learned to swim (well, we're still working on that...):

And she started kindergarten:

And NONE of that would have been possible without the feeding tube! 

Sunday, February 7, 2016

FTAW 2016- Awareness: The Power of Tube Feeding

It's Feeding Tube Awareness Week again! Today's topic is:

Awareness: The Power of Tube Feeding
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding - most of which you can't see.

There are many reasons why Raya has a feeding tube. There were many reasons why she got one at the age of 10 weeks old, and there are many reasons why she still has one 6 years later, so I will explain both.

It started a little something like this:

And this:

In short, we had a miserable, refluxy, crying, screaming, projectile vomiting baby. She wasn't our first refluxy baby. She wasn't our first to spit up what seemed like most of what she had eaten. She wasn't our first to cry more than the average newborn either. She WAS different from the others though. She was the first of our babies to projectile vomit. She was the first to not respond to the comfort measures and interventions that had helped the others, and she was the first to lose weight instead of gaining it, AFTER we had been trying all the tricks and remedies that we could come up with to try. She was also the first to ever vomit to the point of passing out. The first to start refusing to eat. I mean, what infant refuses to eat?! Isn't eating an instinct?? Yes, but so is self-protection. For my sweet baby, like so many others, eating became too painful. Her instincts told her to stop. She found a balance between eating to relieve the gnawing hunger in her stomach, and stopping to keep the reflux and retching at a minimum. She was pretty smart.

This is where the tube entered the picture. Clever as she was, we could not trick her into eating enough to grow when eating made her feel sick, and her throat hurt from acid reflux and vomiting. She reached the point where she was no longer taking in (and KEEPING in) enough calories to sustain her life, even with all of the less-invasive things we were trying. (and believe me, we tried a lot of things)

There comes a point where the damaging effects of malnutrition become a greater risk to the well-being of the child than the risks of tube feeding.

We reached that point on January 20, 2010. We were 2 days into our first hospital admission, and nothing had changed since we arrived at the ER 2 nights before. Weighing in at just over 8 pounds at 10 weeks old, she was refusing to drink anything by mouth at all. We had no choice, and so we did what needed to be done to save her life. It worked.

One aspect of tube feeding that I think is widely misunderstood by those who are on the outside looking in is that for many kids, the point at which the tube goes in is often not the peak of the child's medical "crisis", for lack of better word. On the outside, getting to the point of needing a feeding tube seems like the worst of the worst. It seems like the lowest point. The crisis moment. And yes, often it is a crisis moment, but it may not be THE crisis moment. Tube feeding often prevents a child who is heading toward a health crisis from actually having one. For many kids, the feeding tube is what sustains life while their parents and doctors try to find what is at the root of the problem. Vomiting is a symptom. Weight loss is a symptom. Food refusal is a symptom. Feeding tubes, medications, specialized formulas, herbal remedies, and holistic treatments are all ways to help alleviate those symptoms while the team is in search of a diagnosis that may or may not lead to relief of the need for the feeding tube, but there is almost always something else going on. There was so much more happening inside Raya's little body that we could not even begin to figure out until we started tube feeding her.

From the outside looking in, it may seem that getting a feeding tube is when the child hits rock bottom, but it's actually not. For many kids, including Raya, the feeding tube keeps them from dying when they DO hit rock bottom. It preserves their strength to fight whatever illnesses and ailments they are fighting. It allows them to get the nutrients they need so that their brains can continue developing. It allows them a chance to meet developmental milestones. It allows kids who cannot or will not eat to still thrive.

Now here we are, 6 years later and still relying on the tube for 100% of Raya's nutrition and medications. I know it is often difficult for people who meet Raya to understand why she still needs a feeding tube. I hear a lot of "She seems so healthy!" and "She doesn't look like there's anything wrong with her." And I know anyone who spends more than a couple minutes with her will question how a child with her energy level can possibly have medical problems.

She CAN eat. She does eat SOME food, but she has heavy dietary restrictions due to food allergies and difficulty digesting certain foods, but mostly it boils down to the fact that eating is just not her favorite thing. She feels about the same way about eating that she feels about coloring. She'll color if someone tells her it's time to color, but she doesn't usually think of it on her own. Sometimes she finds a coloring page that she really likes and she'll color the whole thing, but most of the time she colors a little bit of it and then she gets bored with it and she's done. Coloring takes a lot of effort and she doesn't get enough enjoyment out of it for the payoff to outweigh the effort. The same goes for eating. The biggest difference between how she feels about coloring and how she feels about eating is that eating and digesting food is often physically uncomfortable for her. She has a chronic pain condition in her digestive tract that makes the presence of food uncomfortable and often painful. She still has reflux. She has a difficult combination of food allergies. She has a very short attention span. She has a difficult time maintaining a healthy growth curve on food calories vs. elemental formula calories.

There are still unanswered questions, and we do still hope for the day when Raya won't depend on a feeding tube anymore. For now, we are just happy to have her alive and thriving, and we owe it all to her feeding tube!

For more about Feeding Tube Awareness Week, check out the official Feeding Tube Awareness Week website, and follow the Feeding Tube Awareness Foundation on Facebook

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