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Tube Update 1-2-3 Strikes

Do you ever have a destination that you think you are headed and then suddenly and drastically figure out that you need to get to your destination via a different route?  Well, that has been the process of the entire last month in somewhat frustrating ways…but at the same time, GOD ORDAINED ways!  When walking through difficult situations, it is so hard to see the glory of the Lord at times.   But somehow, when the fog clears a bit and all you can see is the brilliance of  Jesus leading you step by step…your heart has nothing but deep gratitude to the Lord for his incredible faithfulness. Well, that is the story so far of this last month!

Well we have officially had the tube for a little over a month.  About three weeks ago I wrote about how the feeding tube was going.  It has been a painful, difficult and extremely frustrating process.

For this being such minor surgery, Rachel really struggled getting over the pain of it all.  Maybe she had stronger stomach muscles than the dr. realized from gymnastics, maybe her previous abdominal scar tissue played a bigger part than realized, maybe her pain tolerance is just low,  so many maybe’s.  Outside of the pain issue, the other major issue that we contended with was her feeling sick EVERY SINGLE DAY!  And nearly all throughout each day.  We knew the formula was likely the cause, but didn’t know what else to do.  So, day after day we kept hooking Rachel up to the pump and pushing through the only thing that we thought we could.  Though it was awful smelling, extremely expensive, it was a caloric formula that we were instructed to use as a tool to help her gain weight.

Baseball season is upon us.  And I thought the analogies of baseball were just so fitting in this scenario. Bringing us to…

Strike one~

The formula is expensive.  If we were just using Boost, or some other lower cost formula we would be alright, but Peptamin is very expensive.  Anywhere from $8 (if we jump through some hoops) to $12 a bottle and Rachel’s goal was 4 a night.  So at it’s cheapest it would be nearly $25 a night or roughly $800 by the time the month was up out of pocket.  We had a grant, but that grant will expire in a couple of months and not be renewed in the same way.  So, we began seeking other methods of paying for this with the social worker, and dietician.  Though we tried several angles, we kept coming to an impasse.  It looked like the only way to get her formula was to pay for it out of pocket.  My precious husband took it all in stride, making sure I knew that he could pick up more hours or a part time job.  Problem there…we have FIVE KIDS!!  If he works all day, and then works all night and I am home alone with my fab five, that money might just be going to counseling.  So, we began praying for other options.

Strike two-

Rachel was sick every single day with the formula!

One thing we definitely noticed was that she was starting to have serious reflux issues as soon as she laid down.  They were pretty mild to start with, but increasing with each day.  The dietitian had a goal of getting Rachel to 1,000 ml (4 containers of formula) a night which would provide around 1,500 calories a night.  Rachel’s total caloric intake was to be somewhere around 3,000 a day.  So we started at one container.  Moved to 2, and then 3.  We noticed that she really, really struggled trying to move up.  Upon the advice of some dear cf mama’s they said to try backing her down.  So we spent a couple of weeks going down, and then trying to go back up after a few days.  At the low feeds, and slow rates, she still struggled.  She also had this weird stomach popping thing going on all night.  She did not sleep because her button was constantly sucking in to her stomach.  It was as if someone was pulling the button from the inside of her and wouldn’t let it go.  It would hold there for 10 seconds or so, then literally snap, or pop back out.  We watched it in amazement as Rachel endured the pain and discomfort of it time after time.  This popping we thought was due to her being hungry through the night (and in part we believe still happens when she is hungry).  So we just told her to keep eating through the day, and then endure the 30-40 pops every night.  We were certain it was due to the formula, but had no hard proof.  We used zofran, and mints and peppermint oil, and bought wedges to lift up her bed.  It all helped just a bit, but did not help enough to make her comfortable.  Every night and every morning she woke looking and feeling awful.  Sometimes in tears from the pain of the tube sucking in all night, and the pain of being hooked up to a cord that pulled and tugged all night, and then other times from the nausea. We started to noticed that she felt so awful from no sleep, and tummy pain that she was eating very little by mouth in the day.  Which leads me to.

Strike three-

I had written in my last post that she had gained 5 pounds and that we were pretty happy about that.  Which we were.  But shortly after I wrote that, I realized that she had gained nearly five pounds, but it was only the five pounds that she had lost with the upper GI and barium test she had run.  (Can’t remember if I wrote about it or not, but when she had the barium test, she had stooling problems for nearly 7 days after.  Dr. accounted it to the barium being hard on her system.)  So the morning of surgery she weighed in at just 64.8 pounds.  When I wrote, she had made it back up to 68.6.  We kept reaching for that 70 pound mark.  No MATTER what we did, we could not get there.  When we decreased the feeds over night, we thought she would be more hungry in the day.  That did not happen.  She still felt sick.  When we went up, she still did not see the scale move.  Can you imagine the horrible feeling of my girl when she stepped on the scale day after day only to see the same number as the day before?? It was awful to see her great disappointment!

Through a series of the Lord’s hand, and people speaking into my life, I felt like we had been knocked down long enough.  Something was going to change.  Three strikes in baseball means you are OUT!  One of our precious doctor friend’s that is now a missionary in Guatemala wrote a quick note reminding me that God has equipped me and that this tube was a tool, and that we could use it how we saw fit.  Doctors know a lot, but they don’t know everything. What a word that the Lord used in my heart.  I began seeking God’s direction.  I have said since Rachel was little if I could only eat for the both of us, she would be fine (I am constantly trying to loose weight while helping her to put it on).  But, I love nutrition and have a fair knowledge of it (starting way back when Caleb was a baby and I had to learn to eat turkey and rice for months and months).  I knew if I just had the tools, I could make the food that would nourish her body.

Thus began our journey into blended food.

Peanut butter banana pancakes, with real maple syrup. YUMMY! I actually licked the spatula on this one with out thinking. Good thing it tasted GOOD!

Avocado chicken and cheese blend was pretty yummy too.

Rachel’s tummy looks so much better with out the tube pulling and spinning all night. It is still healing, and we are watching to make sure her stoma heals the best it can.

Look at those checks. Color, and a bit of chubby! So strange to see on her. Going to NEED to shop for new clothes for the first time in years! Exciting.

More time. It takes about 20-30 minutes to load syringes and push feeds in. Dad helps in the evening. Thankful because it is sometimes hard to push the food through if I make it too thick. =) And we MUST learn how to get it done EARLIER. Most nights we are getting finished around 10:15-10:30. We will get there. Just a process.

Silly girl. Acting like she can taste it…or wait she can.

This was a weight from the other night. She was SO HAPPY!! Since this she has gone up even a bit more. So exciting.

We started on April 1st with Rachel’s first real food blend.  I put oatmeal, an egg, butter, and syrup in our Ninja blender and went for it.  I blended it forever, and then I syringed it in her tube and waited for some horrible response.  NOTHING!  She said she felt fine.  That night I did the same again with a bit of a different combination.  She did great.  ( have to add a BLESSING from the hand of God via a precious soul.  We knew that if this real food blend was to work, we would need to get the right syringes, which were not a big deal.  And, a good blender, which was a bit of a big deal.  The ninja worked for easy stuff, but we would need to add more complex foods to really make this work.  We had tried several other combinations with the Ninja and they were getting stuck in the tube.   So we put out a plea to see if  anyone had a Vitamix that we could borrow to test the blends on.  We had a sweet friend that offered to loan us hers.  Yippee, knowing we had the ability to really test the foods would be a blessing.  She even offered to drop it off at our house.  When she did, she surprisingly said, that we could just have it if we thought it would work for Rachel. AMAZING!!  OVERWHELMED, and HUMBLED beyond words.)  This blender made all the difference in the world.  As soon as the sweet woman left, Rachel and I raced into the kitchen and began blending!  We continued this pattern for several days of finding new combinations that “tasted” good.  Rachel began doing so good, we were confident that we could reduce the formula at night to just a slow drip.

EVERY
DAY
SHE
GAINED
JUST
A
LITTLE
WEIGHT

You should have witnessed the intense joy of my girl’s face.
DELIGHT
VALIDATION
ACCOMPLISHMENT
SUCESS!!!

Finally, something that was working.  We were still doing the nighttime formula because Rachel was afraid if we stopped, that she would “pop” all night long.  My theory was that the formula was making her sick.  After all, formula is man made.  While there is an absolute need for it for some people, I knew Rachel could do just fine on actual food.  If only I could get enough of it in her tummy!  So in faith, we stopped the nighttime feeding.  And guess what???  She woke that morning saying, “This is the first time I have slept through the night since I got the tube!!”  SAY WHAT???  PRAISE THE LORD!

Oops. I pushed too hard! =( And, this is one of several times Rachel has wore the food. Mom and dad have had their share of it as well. =) Still learning.

The cherry on the top.  She has gained over 5lbs this week!!  After two and a half weeks of NO WEIGHT GAIN, she has gained OVER 5lbs!  Sunday April 30 she weighed 69.8.  Last night (5-8-17) she weighed 75.2.  Oh how good the Father is to lavish his gifts on us.

Look at that FACE!! What a happy smile. This is what it looks like to see some success in the area of weight gaining. So happy for her.

We are absolutely thrilled!  The success feels awesome.  Now the flip side is that it does take a LOT more time as I am trying to get into a good routine.  I have tried several things, and funny enough, you think that a person can not taste the food because it is going into the tube.  HOWEVER, I have learned that burps count as “tasting” and it should be a good taste.  In the short amount of time we have tried many blends.  (At least 20 different combinations so far.)  There are some that work well, and some that don’t.  Sausage and eggs in the tube was a definite, “Mom, please don’t do this blend again!”  One day she ate part of an apple pie before she was full.  So…I did what any good mom would do, and blended it up and pushed it in her tube. =) I felt a bit guilty at first, because ONLY nutritious stuff should go in that tube.  But then I realized, a little extra calories from pie, WOULD BE GOOD for Rachel.  So other than a little more thought to come up with good calories, good nutrition, and something that tastes good, it has been a blessed challenge.

Along with the fact that it takes a bit more time to blend the food and then to syringe it into her (an average of about 20 minutes per feed).  We are still trying to adjust to the added time in the day.  Even when it is already blended, it still takes a bit of time to push it in.  I think it is an equal trade of time trying to get her to eat food through her mouth, and blending the foods.  But it is still time and a new routine.

The process has been good, albeit a bit of a learning curve.  We will get there!  We have had some mess-up’s along the way and praise the Lord we have been able to laugh at ourselves.  Getting a syringe full of blended chicken enchiladas full in your face because you pushed too hard…is not fun, but I dare to admit that we have wore many different feeds on SEVERAL occasions now.   All in the name of learning.  But, I would rather smell avocados on us than formula ANY DAY!! God is good and we are so thankful that we are on a path to gaining weight for the first time in her life .  Oh, the exuberance on her face when she steps on the scale is worth every single bit of time and effort I have put forth researching and blending good food for my girl.  With God all things are POSSIBLE!!

 

 

 

 

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4 Responses

  1. So happy for you and Rachel! Thanks for all your updates as we want to keep up to date on what is happening with all of you guys. Prayers are definitely working, God bless your entire family. Love you guys?

  2. Thank you for sharing your story. We have been having the g tube discussion with our team as our son is not gaining as much as they would like. Just an hour ago I came across this feeding tube info, but I thought you might be interested in the websites and other resources listed on the last page. Glad to hear that your daughter is finally making great progress. https://lookaside.fbsbx.com/file/PE442.pdf?token=AWygN7ApEEorM9UDCZCRnewe2k960QLofhmNeZ-2PX8Q1PfnWBsKlluW9F1Ixea9lrgDH1QS_Eh_VFxJ7n-vTJ5ObDD-l3sbunMSy50PtTq_ixOLe5tXrr8bc5u8aIDG03C9hL8jrrVJFAff1kwN1bOP

  3. It is such a scary process for sure. We know that it is a good thing, but the bumps along the way were certainly unexpected. So incredibly thankful that things are going better now though. We will pray that your journey is smoother!

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