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,

Delta's History - Part 3 Finally Catching Up to the Present



Delta and Echo at Echo's

1st Birthday 3/14/2010



In January of this year it was decided that Delta should have a swallow study.  Perhaps that would explain why she wouldn't eat.  The swallow study was done by two lovely occupational therapists and one agile radiologist.  Delta had a hard time sitting still in the seat but was eager to comply with the therapists asking her to swallow different textures from a thin liquid to a solid.  I was amazed at how well the radiologist moved around with his x-ray machine to get the pictures.  It was determined that Delta had no functional problems swallowing but that it was quite obvious that she didn't like certain textures and she was highly distractable and that could make feeding a challenge.  The Occupational Therapists recommended feeding therapy that started in early March at witch she got the diagnosis of Sensory Processing Disorder, basically the nerve impulses that she receives in her senses have trouble processing and in some cases she's over sensitive and perceives what one might feel is pleasant as painful or irritating.

Shortly after having the ng tube placed.
The arm splints are to keep her from removing it.

On March 21, we dedicated Echo to the Lord in our church.  We had put this off for a full year as we were struggling with our Faith.  How could we dedicate a baby to God, when our prayers for our toddler seemed to fall of deaf ears?  We finally realized that although we are Delta's parents, we are not in control.  We cannot stop her from having pain or suffering in life and hard as it is to admit, God might not have plans to heal her.  This didn't mean we were giving up, only that we were taking the role of co-pilot instead of pilot. 

At home with her ng tube and her
feeding pump in the background.

On March 22, Delta was admitted to the hospital for failure to thrive.  We had held off as long as we could but it was apparent that she could not or would not eat enough on her own.  She received an ng tube that afternoon and was not at all pleased.  We were in the hospital for three days and then returned home.  The ng tube allowed her to grow but did not make her happy.  Delta had always vomited or refluxed but now it was a daily if not hourly occurrence.  We had medical paraphernalia all over our house and simple things like joining Bravo's class for a walk at the seashore became a complicated exercise in timing, positioning and carrying enough stuff.  Delta had a hard time tolerating her formula at very high flow rates which meant she spent 13 hours a day hooked up to her feeding pump.  She also completely quit eating the day she got her ng tube.  For the first several weeks with the tube, I doubt she ate more than 3 small bites of food per day.



Shortly after g-tube surgery

Delta continued with her feeding therapy but made very little progress after the ng tube was placed.  She started accepting foods she normally would have thrown on the floor on her plate but very little went into her mouth.  In April we had an evaluation at a local feeding clinic.  They confirmed our decision to pull Delta's ng tube and get her a g-tube directly into her stomach and suggested that we also see an ENT and get a sleep study to rule out any of those issues.  Also since our current OT was leaving her position in June we decided we would start feeding therapy at the clinic in June.  In May Delta got her g-tube a direct port through her abdominal wall into her stomach.  After an initial scare, the doctor's accidentally put two holes in her stomach so she had to be nothing by mouth or g-tube for 72 hours, she healed well.  When they placed the g-tube they did another biopsy of her small intestine.  In this biopsy they found  a high amount of a type of peptide that is only seen in celiacs getting gluten or the severely malnourished.  Since she had been getting her full nutrition from her tube for the last two months and all her vitamin levels were normal we new that malnourishment couldn't be the cause so her celiac disease was  confirmed.  We finally started treating her reflux after 2 1/2 years and she started on prevacid and Reglan.  The prevacid was to help keep her stomach acid down and the Reglan was to help he not vomit and empty her stomach faster.  I'm not sure exactly which it was but it worked.  Delta hardly vomits now.  After two months Delta was on vacation and her meds were forgotten for a few days and it was realized that she somehow didn't need them so now she has quit vomiting and is medication free.  Since the g-tube placement her growth has been mostly steady.  She goes to weekly feeding therapy with another little girl with celiac and since her 3rd birthday she has shown more interest in eating so we pulled back a little more on the tube feeding and currently her growth has stalled.  So we are taking a short while to try and get her eating more and if that doesn't work we will have to increase the tube feeds again.  It is a delicate balance to try to find the right place between giving little enough tube feeds to invite a little hunger and getting enough that she is properly nourished and can grow.  Delta still hasn't seen an ENT but hopefully that will happen in the new year.  She saw a pulmonologist and had a sleep study a few weeks ago and it was found that she does have sleep apnea.  We go back to the pulmonologist in December to find the full results of the study.  Delta is being tested for cystic fibrosis for the 4th time as an explanation for her poor growth, all her other tests have been insufficient quantities of sweat for an answer.





Blowing out the candles for her 3rd birthday.



Catching butterflies in the yard.



Hiking at the State Park



Delta keep us hopping for sure, but we wouldn't have it any other way.  How does it affect the other kids you may ask.  Well, for Alpha it simply brings out his amazing compassion and sensitive heart.  Bravo gets a little jealous but is understanding most of the time.  She had a particularly hard time when we had to miss her 1st grade play right after Delta's g-tube surgery.  Thankfully a great friend videotaped it for us.  Charlie struggles, he even asked for a button (what we call Delta's tube) like Delta's and Echo, she has never known any other life.  She looks for her button and tubie at times and wonders why she can't find it but to hep feeding tube, syringes and pumps are just normal life.  I guess now they are to all of us.

Sleep Study





Dancing with my nephew at my sister's wedding.



Delta's History - Part 2

Reading all her books before taking them to the library.

I left you last right before Delta's first birthday.  We celebrated Delta's first birthday with friends and family at my parents home.  We had a great time although Delta often seemed overwhelmed by all the attention.  She made a mess with her cake but didn't eat much and enjoyed opening presents.  We had asked that everyone give Delta books to donate to the library rather than gifts as we had an abundance of toys and clothes already and Delta loved and still does love the library.

Shortly after her first birthday we changed pediatricians, not because we didn't like the one we had, but because we wanted one closer to home and because I really didn't like the office staff at our current pediatrician's office.  Within the month we had well baby/well child visits for all four kids.  The new pediatrician wanted to rule out causes for Deltas tininess as she was only 15 pounds.  We ran blood tests and found out she was quite anemic and tested positive for celiac disease, an autoimmune disease that causes damage to the small intestine and malnourishment with all its complications when gluten is ingested.  Alpha failed a vision test, Bravo failed a hearing test and were referred to the opthamologist and audiologist respectively and Charlie we discovered still had an undescended teste and had to see a urologist.  Delta was referred to the gastroenterologist to look into the celiac.  We saw the GI doctor in early October and she told us we needed to do a small intestine biopsy to confirm Delta's celiac disease and it couldn't be done until December.  In the meantime we were to give her lots and lots of gluten to ensure that the test had good results as if there was not enough gluten in her system, the results would be negative whether she had celiac or not.  So we began to give Delta crackers, bread, pancakes, cookies.  Every time she turned around we were offering her more.  In the meantime she became a very cranky, lethargic and antisocial baby.  She started screaming when strangers talked to her at the store.  She was rarely happy and hard to console.  She often laid on our living room floor for hours and just cried, any attempt on my part to console her just made the crying worse.  She started waking every hour or two at night and was simply put miserable.  In mid December the day of her biopsy finally came and we got up extra early to be in San Francisco at 7 a.m.  Delta had a really hard time coming out of the anesthesia but otherwise all went well.  James and I decided to start Delta on a gluten free diet that day, as we didn't have anything to lose by trying it.  Within days Delta's screaming stopped and we saw her smile again.  She was still lethargic however.  When we went back to the GI doctor she said her biopsy was inconclusive.  They couldn't confirm the celiac but they couldn't say she definitely didn't have it.  They recommended we test her again later.  We felt differently.  Untreated celiac disease leads to severe problems, when you have celiac and consume gluten your body cannot absorb the vitamins, minerals and calorie content of the food you eat so you literally begin to starve.  If we waited a year and tested again unrepairable damage could have been done in that time.  If we kept Delta gluten free there would be no way to test later.  We had already seen improvements in Delta's behavior and we were willing to continue with the gluten free diet.  We had absolutely nothing to lose.  Interestingly her iron levels had gotten much worse despite supplementation.  When we went back in January Delta had gained a pound in a month, something that she had never done before in her life and her iron levels were holding steady although still quite low.  I also did a lot of research on celiac and found that biopsies were very unreliable in young children and that almost all kids with positive blood tests will eventually have a positive biopsy if not on a gluten free diet.  One doctor from New Zealand even went so far to say it was child abuse to keep a child with a positive blood test on a gluten containing diet until they had biopsy proven intestinal damage.  This confirmed our conviction to keep Delta gluten free.

Enjoying some family time at Disneyland in April of 2009.
Thank you Disney for your Armed Forces Salute
that made this possible for us.

We chugged along through 2009 with many small but significant events.  Delta's energy and iron levels improved throughout the year.  In February Charlie had surgery to lower his undescended teste.  Alpha and Bravo had seen their vision and hearing specialists, Alpha needed reading glasses and Bravo just needed her ears cleaned out.  In March Echo was born and that same week Delta started speech therapy.  Her first day Echo was less than one week old.  Delta continued to have ups and downs in her growth and her gastrointerologist started her on Pediasure.  In June they switched her to Boost 1.5 for even more calories and too our shock we got a visit from Child Protective Services.  They were there because they were concerned about Delta's weight.  They opened a voluntary (meaning we agreed to it, but I'm not sure what not agreeing would have led to) six month investigation.  The first weeks of this were awful for me.  I really struggled with the thought that someone, somewhere thought I wasn't doing my job as a parent.  In August Delta's GI said if she didn't gain a pound in the next month she would be admitted to the hospital for Failure to Thrive and would most likely be getting a feeding tube.  We started her on periactin an antihistamine, that has a side effect of increasing the appetite.  The first week on periactin was horrible, it also made Delta tired and grouchy and once again she was having screaming fits.  One lasted three hours until she literally passed out on the kitchen floor from exhaustion.  Thankfully these undesired effects only lasted for 4-5 days.  Unfortunately periactin has to be cycled on and off to continue working so we went through this every 4 weeks.

Delta's 2nd birthday was bittersweet as we were all quite certain at her next GI appointment, two weeks later, she would be admitted to the hospital.  She did however graduate from speech therapy the month before.  We celebrated at the park with a Mickey Mouse theme, Delta's favorite.  When we went back to the GI, we were shocked to learn that Delta had not gained one pound but nearly two is just six short weeks.  We sang, we danced, we praised God for a happy and getting healthy little girl, she was thriving and just barely on the growth charts.  In December CPS finally closed their case and decided we were indeed doing all we could for Delta.  Sadly in January the periactin quit working and Delta's weight gain came to a screeching halt. 

I will continue with this year's journey in a post very soon.

Heidi