Turkey Disaster Diverted!

Naomi woke up this morning in a pleasant mood.  That right there is reason for celebration.  Naomi usually wakes up grouchy and there is a host of things that can send her mood into a tailspin in the morning. The trouble is they change every day, sometimes it's eye contact, sometimes I suggest we get dressed to soon, sometimes one of us talks to her and she wasn't ready so a happy girl first thing was exciting.  Never mind that I've got too big kids home from school today with a virus, I've got a happy Naomi in the morning so I'm going to celebrate.

Well not only was she happy but she wanted to EAT right away.  I usually cannot interest her in food until 10 a.m.  She wanted turkey so Bethany feeling chipper after her Tylenol kicked in ran to the fridge and pulled out our gluten free, nitrate free turkey lunch meat.  Naomi started to wail.   I thought it was because Bethany got the turkey and she wanted me to but, no, she wanted different turkey.  I pulled out some leftover chicken from the fridge and told her it was turkey but she started to cry harder.  "NO, I want different turkey!"  Bethany and I tried for half an hour to tell her there was no other turkey and this is what we had and she proceeded to cry harder and harder insisting she want different turkey.  I finally left her alone to diaper Mary and brush my teeth and hair and came back to a still crying Naomi.  I began to think how am I going to get any food into her mouth or a tube with her laying on the floor throwing a fit.  In case your wondering tube feeding does take some cooperation or we will have a huge mess and potentially a removed tube.  Finally at my whits end, she'd been crying nearly an hour, I asked her if she knew where the "different turkey" was.  She got up took my hand and led me into the dining room where the grocery bags of non-perishable food from our last grocery shopping trip sat on the table and pointed to a bag.  I peeked in and there on the top was a bag of beef jerky.  I pulled it out to a squeal from Naomi. "My turkey!"  Turkey disaster diverted and despite two sick kiddos, I think it is going to be a very good day.

Addendum:  As I was getting ready to upload a picture of Naomi with her "turkey" my computer crashed so I am publishing this from my parent's house.  Thanks mom and dad!  So today turned out to be an interesting day and hopefully the computer guy will be able to fix our computer without draining our bank account.

Jelly Belly Basket Weaving - Fun time with the girls

Yesterday was a momentous occasion.  Bethany wove her first Longaberger Basket.  I wove my second and had a great time with my mom, sister, niece, mother-in-law, sister-in-law, Bethany and Naomi (all though she just watched).  Longaberger has become somewhat of a family tradition. 

My mom loves Longaberger and gave me my first basket a hand-woven doll cradle as a young girl.  I now have a house that is adorned with many baskets and even sold them for awhile.  I have wanted to go to the Longaberger homestead for years, but the trip has not happened.  But we did get the next best thing.  Longaberger came to us.  We went to the Jelly Belly Factory in Fairfield, California and with the assistance of expert basket weavers we got to weave our very own one of a kind basket. 



Bethany and I with Ray our Professional Basket Weaver.



We also got to sample Jelly Bellies and fudge.  What could be better?  Naomi loves all the different yellow Jelly Bellies.  Bethany loves to try all of the Jelly Belly recipes to make different appetizing flavors like root beer float (2 root beers and 1 cream soda) and Blueberry Muffin (2 blueberry and 1 Buttered Popcorn).  We discovered it doesn't matter what language you speak Jelly Belly has the recipes written out for you.  There was German, Greek, Arabic and Japanese to name a few.

The whole family was going to go but alas poor Sam woke up in the morning with a 102 degree fever so daddy and Sam stayed home.  We left Mary too.  Please don't tell her she missed anything special.  And Elijah chose to spend the day with Papa.  We opted not to go on the tour this time.  We've been at least half a dozen times already.  The tour isn't that spectacular that multiple trips are required but the abundant free samples at the end, they even give them to the babies, now that is special.  The kids really like the paper hats they give you to wear as well.

What we thought was going to be a family outing turned into a fun multi-generational girls day out where we got sweet treats and came home with beautiful baskets woven by us!  Today was a success for sure.


Me, my niece, Bethany, my sister and my mom in front of the Longaberger Basket.



Cousins.



I've Lost Touch With Reality

It looks like Naomi might be in a good position to try to wean from her feeding tube.  She no longer vomits.  Words cannot express how happy that makes me.  Until you have cleaned vomit from clothing, bedding, furniture, carpet, hardwood, pavement and people daily for a prolonged period of time you cannot understand how blessed mommies of persistent vomiters feel when they get a few emesis free days.  She is growing, very slowly, but growing.  Her celiac is under control and we are confident in the gluten free diet.  She no longer has huge speech delays and is very interested in other children and what they are doing and we finally have a date for her tonsils to come out the end of April so unless the bronchoscopy shows aspiration damage we are planning to start being more aggressive with her oral eating in May.

Here's my big problem though.  I have no idea what "normal" is for a preschooler's eating habits.  Although Naomi is fourth in our line-up of children it has been several years since Sam and Beth were little and Elijah isn't a good model to hold Naomi up against.  Elijah loves to eat.  He recently asked me how much more pounds he would need to be as big as daddy.  I told him he'd need at least 150 more.  He smiled and replied "Oh good that means I have to eat lots and lots."  I sincerely doubt Naomi will ever eat as much as Elijah.  So far today Naomi ate one container stage 2 baby food pear-pineapple with colored sugar sprinkles mixed in.  I know it is baby food and she is three.  It is what she wants, it has some nutritional value so I give it to her.  Honestly if she asked for a bowl of sugar, I'd give it to her, I would just try to hide it from her siblings.  She also ate about five pistachios.  While I was doing laundry Naomi and Mary dumped a Costco container of Parmesan cheese on the kitchen floor.  I came into the kitchen to find Mary and Naomi in all their cheesy splendor licking the cheese off their fingers and the floor.  I was not happy about the mess, but secretly I was happy Naomi was eating.  Licking it off the floor is a bit unconventional and will probably be a problem when she starts school, I don't see the school working with me on that as part of her 504 plan, but she was eating and a calorie dense food to boot.  For lunch she requested "gluten-free Nomi oatmeal with chocolate chips" so as I'm sure you guessed that's what she got.  She expertly mined all the chocolate chips out so I gave her a second serving of chocolate chips, they were organic, but she was done.  She's had a few sips of water today too, she isn't interested in juice or milk at all today.  Later this afternoon she may eat a cracker or two or dip some carrots in ranch dressing but it will only amount to a few bites and dinner is feast or famine with her.  If she is in a good mood she will often eat 1-2 ounces of meat and maybe a bite of something else, if she is in a bad mood, she will push the food around her plate, dump it on the floor or completely refuse to come to the table. 

Somehow I don't think this is normal, but maybe some of it is.  What does a normal three year old eat?  What should I be shooting for?  This is where I need your help.  I'd love to hear what your child does or did eat at three.  Please leave a comment, send me an email or Facebook me.  When I can recall what normal is I might have an idea of how far it is we have to go.  Right now it looks like there is a huge ravine between us and being tube free and there is a rickety bridge that crosses it but unfortunately it is missing most of the slats that would support our feet.  It's pretty scary trying to cross on just the ropes, we get tangled up, swing wildly out of control and spend so much time in fear of falling off.  If only I could get a few of those slats replaced....

My not so typical three year old.

Feeding Tube Awareness Week Comes to an End

Today is the last day of our first Feeding Tube Awareness Week and I am sad to see it come to a close.  This week has done amazing things for me and for the tube-fed community.  It has given me a platform and a reason to speak out about Naomi's feeding tube and thus opened up many conversations with friends and acquaintances about feeding tubes.  It has allowed me to share what our life is really like and reflect on how thankful I am for a device that I desperately tried not to have as a part of our lives.  It has allowed me to network with so many tubie families that I never would have known and I have been able to give and receive encouragement and advice with them.  It has also given me the courage to be more open about Naomi's tube.  We might even give her a blenderized feeding at the park soon instead of timing the park around our feedings.  We've done formula in her pump out and about but never real food with the syringes.  Most kids don't have to wait until they get home to have a snack or a meal so why should Naomi.  I have realized the only thing stopping her is ME.  It will be more work but maybe it will bring a little more awareness to the fact that some of us just need to eat differently.  We've also had the chance to cyber-meet several adults with feeding tubes and there stories are really encouraging, I especially like Joey's.

Today we are supposed to talk about something positive that has come from the feeding tube and I think this week definitely has been, but the other big plus for us is that Naomi has energy and our life isn't about food.  So instead of telling you, I'll show you.  We can go play in the fun and the sun at the park (nope I didn't feed her this time, but if the weather allows I bet it will happen next week).  I truly believe that if Naomi didn't have the tube both she and I would have been too tired to go to the park.  Naomi from malnutrition and myself from spending hours every day coaxing her to eat and hours every night worrying.  Yesterday afternoon Elijah, Naomi, Mary and I ran off all of their energy while waiting for Sam and Beth to finish school.  Having Naomi and everything that comes with her has made me so thankful for the little things!

Questions - A Better Response to Those Who Asked and Those Who Wanted to.

Yesterday on Day 5 of Feeding Tube Awareness Week the topic was reaching out to friends and family.  Letting them ask you the questions they have about feeding tubes.  Well I posted of Facebook and some did ask and the questions were great.  They mainly focused on how does the tube stay in, what happens if it comes out and how long will she have it.  I hope to better answer those questions today.

The type of tube that Noami has right now is a MIC-KEY button, made by Kimberly Clark.  This is what it looks like in her without her button buddy. 

 There are two pictures: the one of the left just to show you how it looks and the one on the right to emphasize that there are two ports. One that faces out to feed into and one that faces to the side that is attached to a balloon in Naomi's stomach.  The balloon is inflated with water and that is what holds her button in place.  The bottom right picture I found online and this is what her button looks like. 

Her button can actually be changed out at home and should be changed every three months.  We have yet to change it at home as the changes have coincided with appointments with her gastroenterologist but we are feeling braver by the moment and are going to try the next button change at home.  We'll do it in the morning on a weekday though, that way if anything goes wrong we can whisk her off to the GI doctor and save ourselves an ER visit.  The video I've included is another tubie mom and her daughter Harmony.  Laura is quite confident changing Harmony's button and I hope to be the same someday.

Now can Naomi's button come out? Yep.  Has it? Nope.  And we are very thankful for that.  If it were to come out and we had a spare button we'd pop the spare in and be doing good.  But we can't always have a spare as the buttons are expensive and insurance companies don't like to pay any more than they have to so, if we don't have a spare button or the button came out at night and we were unaware until later we have a supply of catheters in a range of widths that we can put into Naomi's stoma (the hole in her abdomen) to keep the placement while we head to the Children's Hospital as they are the only ones likely to have a button in stock.  The hole in Naomi's stomach could close in as little as an hour and definitely would within four hours so if the tube comes out timing is everything as we certainly wouldn't want surgery again.

A lot of you have asked questions about feeding therapy too, what do we do there, does it accomplish anything?  I plan to answer those soon along with pictures of a session but I need to either have Naomi do a session by herself or get the permission of Naomi's therapymate before taking and posting pictures.

Today's topic for Feeding Tube Awareness week is to tell about a negative and how it could have been positive but frankly I don't have much negative to report.  Thankfully our friends and family have been supportive and willing to work with Naomi and any limitations she may have with her celiac and her feeding tube and we are very grateful for that.

Tell Me How to Get to Sesame Street

We all watched Sesame Street as kids or at least we knew someone who did.  For years Sesame Street has shown thousands of different children and adults representing our diverse culture.  They have had children and adults of every race, including mixed races.  They have had people with Down's Syndrome, those who are blind, use hearing aides and wheelchairs.  They have never had a child who is tube fed.  There are thousands of tube fed children in the United States alone right now and they would love to see someone like them on Sesame Street.  Would you join me in our cause on Facebook Help Get a Tube Fed Child on Sesame Street.  By joining this cause you are showing Sesame Street that thousands of people, not just a few, care about diversity on Sesame Street.  Also would you considering writing Sesame Street and letting them know.  Select food as your subject and your letter needs to be 1000 characters or less.  Seeing tube fed children in the media would make them more "normal" and accepted in their lives. 

Blenderized Diet - How Naomi Gets Fed...Feeding Tube Awareness Week - Day 3

Addressing Misconceptions:  What do you want other people to know about feeding tubes?  Naomi can have real food.  It takes a little more work but Naomi now mostly gets blended up real food in her tube and today we're going to show you how.

 

So this is what Naomi ate at first.  On the left is a 1.5 formula (1.5 calories per milliliter).  The  four boxes a day equaled 1420 calories, this blew Naomi up from below the growth curve to the 50th percentile so we cut back to a 1.0 formula on the right  this was 948 calories.  But on both formulas Naomi had lots of tummy troubles.  We also really wanted to give Naomi real food.  When I read the ingredients of both formulas corn syrup solids was right near the top of the list.  We'd also been told by our feeding therapist and members of our local feeding tube support group that children were more willing to eat on a blenderized diet, so we scoured the Internet for the little information there is, found a great online group of people who were already doing a blenderized diet and jumped in.  So this is how we prepare Naomi's food and give it to her.

First we get everything ready.  This is everything that went into today's blend, except I forgot to include the almond butter and black beans in the picture.

 Then we throw everything in the Vitamix, our high speed blender.

And blend, it usually takes about 3-5 minutes of slowly walking up the speeds and then 2 minutes on high to make sure everything is well blended and broken down so there are no large particles to block her tube.

Then we pour the blend into 8 ounce glass baby bottles.  This blend filled 3 bottles.  Do you have to use these bottles? No, but we like them.  I prefer glass to plastic and these are a good size for storing.  We either store in the fridge or freezer depending on how soon we're going to use it.

Now it's time for a feeding.

First....

We put the baby to bed, just for the mid afternoon feeding though.

Then we get everything ready.  We put a towel on the couch for Naomi to sit on, we grab baby wipes, her blend which I warmed up to room temperature in sink of hot water, a bottle of water, a 10cc syringe, a bottle of whole milk, an extension set and a 60cc syringe with plunger.  The little table was $20 at IKEA and well worth it.

Then we attach the extension to Naomi's button and plug the 60cc syringe into the extension.

We pour the blend into the syringe.

Use the plunger to push the blend into Naomi's tummy.  Some people gravity feed, let the blend run into the tummy.  We make Naomi's blends too thick to do this.  When we first started we plunged really slow but now we do three syringes full in about 5-7 minutes.

Then we pour about an ounce of milk into the blend bottle and shake it up and pour the last bit through Naomi's tube.

Sometimes we make a mess, this is why the towel and baby wipes are the most important part.

Last we flush the tube with water.

All done!

Sam, my photography assistant.

Elijah, who offered much instruction during our demonstration.

And Bethany, chief editor.  She told us which pictures NOT to include.

Feeding Tube Awareness Week - Day 2

Today's topic for feeding tube awareness week is pictures before and after. 





Naomi was quite thin before her tubes, you could count her ribs. 





Now you've got to tickle her to find those ribs.

If you want to see more, I created an album on Facebook that shows several before and after tube pictures.  Perhaps one day we will be able to show an after picture of Naomi tube-free.  We are hopeful for that day but realize there is a lot of work, mostly on Naomi's part to get there.

Today we answer the question... What is the most positive benefit your child has received because of tube feeding?  Reduced stress and positive eating experiences.  Before Naomi's feeding tube our lives revolved around her eating.  We worked overtime to get as many high calorie foods into her as possible.  We took away water (at doctor's suggestions) and only let her drink super high calorie formula.  We put butter, oil, honey and sugar on everything and Naomi hated it.  If she asked for a fruit or vegetable it came drowned in a high calorie dip.  We were constantly coaxing her for one bite more.  Now with the tube, we still want her to eat, but the pressure is off.  She can learn and develop at her own rate and we have bought extra time to figure out why.  Meal times can be fun again and I don't have to worry about making it super high calorie for her and somewhat nutritious for the rest of the family.  The other major positive is energy.  I never realized Naomi was low-energy until after she got her tube and suddenly had boundless energy.  She loves to play and now has the energy to do it.

Feeding Tube Awareness Week - Day 1

Many of you know that my fourth child, Naomi, has a feeding tube.  This week is the first ever Feeding Tube Awareness week.  We are very excited to be a part of this.  Each day we will do something a little different to hopefully help people better understand feeding tubes and the children and adults who use them.  Today we are launching our video about why some children have feeding tubes.  Please watch and be sure to notice the cute little girl at 2:10, that's our Naomi.

Today we also want to tell you why Naomi has a feeding tube.  To be honest we don't fully understand that.  Naomi cannot or will not eat enough food to grow.  She has celiac disease that prior to diagnosis caused severe malnutrition.  She also has GERD (gastroesophageal reflux) which can be very painful.  She has enlarged tonsils and sleep apnea.  But rarely do any of these stop a child from eating to the point of no growth, but that was the case with Naomi.  Perhaps eating is painful or maybe there is no hunger cues, it's a bit of a mystery.  Whether these issues or something we've yet to discover is why she doesn't eat, we are thankful for the feeding tube (or button as we call it here at home) to keep her alive.  Naomi gets three "tubie snacks" a day, and then eats some orally.  Occasionally she gets a fourth tube feeding or an overnight feeding when her eating is especially down or she's been ill.

For this week, for those of you on Facebook, would you consider changing your profile picture to the one above?  It would mean a lot to me, and eventually to Naomi too, though I'm not sure she gets it now.  For those of you that are wondering, so what does that tube look like, Naomi offered to show it off for us.

And the best part about her feeding tube is that she can eat on the run.  Here she is this afternoon playing with Bethany.  The backpack holds her food and pump which delivers her food at a steady rate.

And lastly we cannot forget Bethany.  This is Feeding Tube Awareness Week but today was also Bethany's birthday party.  Can't believe she's eight!

And lastly those far flung friends and family would never forgive me for not posting a picture of the baby.  So here's our monkey Mary with her monkey.

Oh and last but not least.  I gave up on not using the kids real names.  With five kiddos I just couldn't keep track, so for those of you reading my previous posts.  Alpha=Sam  Beta=Bethany Charlie=Elijah Delta=Naomi and Echo=Mary,