Homemade Backback for Joey Pump

So for the longest time I wanted a new backpack for Whitney's Joey Feeding Pump.  I've just been using the one that the feeding supply company (Option 1) provided.  It blah and fannie pack like so it doesn't stay on my shoulder very well.  I put up a video of it at the end of this post so you can see it.   I was wanting to order one online for like 60+ dollars but I was hoping to get the Zervex Infinity Pump.  The Dr. said that's only for continuous feeds so Whitney didn't get the smaller pump. 

So I went to Walmart in search a small backpack with big zipper front pocket.  Very luckily I found this $7 bright pink small backpack!  It works perfectly!  I bought the Munchin insulator for the ice pack and feeding back.  The backpack still gets cold but at least it doesn't get all wet anymore!  I also bought some foam letters, flowers and butterflies to decorate it with! 

I cut a big enough hole through the insulator and lined it up with a cut hole in the backpack.  Thread the tube through, put it in the pump, and out the other hole on the right side of the backpack. It has the loop on top to hang from her IV pole at night and during her nap.  It's way cuter for outings!  It didn't cost that much and was fun to make! It is much more comfortable to hold and I can wear it on my back WHILE Whitney runs around. 

  Of course now that we are doing to Blended Diet I don't use it all day.  I mostly used it for her 3 night feeds, and one feed during her nap.  The other two meals when she's awake I do some oatmeal cereal and baby jarred puree in with her formula.  Lately though at the 8 AM meal, she throws it up!  I don't know why, she does just fine with the same blend at 4 PM.  I should probably call the dietician about that!

Mic-key button change & Start BD!

Went to the pediatric surgeons office on monday to have whitney's g-tube mic-key button changed.  Everybody there loves Whitney and her long hair and her tap dancing!  My mom and I held Whitney down while the surgeon changed the button.  Whitney started crying when we held her down so I don't think it really hurt her.  I got to see the hole.  It was dark inside, lol, what else.  Not much to look at but very interesting.  The change wasn't as bad as I thought it would be.  But I don't think I'd be able to do it on my own yet.  It's not like the NG tube were they make you change it in the hospital till your comfortable doing it yourself at home.  So I think I'll have the surgeon do it again in three months.  I technically know how to do it if there was an emergency.  It's just like I explain in a previous post. 

Whitney gained 2 ounces this week.  Now she weighs 17 lbs 9 oz. I've increased her volume to 1000 ml's. Pretty amazing, I never thought she'd ever tolerate this much!

12-1 AM 150 ml's

4-5 AM 150 ml's

8-8:30 AM 180 ml's

12-12:30 PM 180 ml's

4-4:30 PM 180 ml's

8-8:30 PM 180 ml's

ToTal = 1,000 ml's

wearing a makshift belly belt

Also!... today I started the blenderized diet (BD)!  I added 1 oz of jarred baby puree (sweet potato)  to 5 oz of her Goat's Milk Formula.  I blended it for a second and it was a little bit frothy.  I ran the 6 oz in the Joey pump over half an hour as usual.  Half an hour after that, while she was just playing and walking around a little, she threw part of it up!  I was pretty disappointed.  I thought she wouldn't throw up real food!  She hasn't throw up in a few weeks!  That was her 8 AM meal sitting in the high chair.

The next meal was just the formula.  At her 4 PM feed though I decided to add oatmeal cereal.  I blended up 2 tbsp of cereal and added it to 6 oz (180mls) of formula and blended it a little bit again.  Whitney tolerated that!  Yay, no vomit!  Although at the end it did get clogged in the bag because I used the Joey pump.  Hopefully by the time we get to full BD, she'll be able to tolerate it faster via sryinge bolus. 

She Gained!

Just a quick post to note that...Whitney K. gained weight!! 

YAY!!

From 17 lbs 3 oz to 17 lbs 7 oz

Gained 5 oz in one week!

Amazing!!

Whitney's feeding schedule for the past week: (all by the kangaroo joey pump)

Homemade Goat Milk Formula

12-1 AM 160 ml's

4-5 AM 160 ml's

8-8:30 AM 160 ml's

12-12:30 PM 160 ml's

4-4:30 PM 160 ml's

8-8:30 PM 160 ml's

ToTal = 960 ml's

Only 2 Throw ups!!

first one was because of duocal. second one was because of too much physical activity while eating.

Shall I increase her volume or start it every 3 hours instead of four?  Now I feel like she needs more because she's not throwing up.  Should I keep this schedule for another week till her next weight check to see if I should increase it or not?

Whitney will chew on some foods like baby puffs while she's not being tube feed.  She ate one whole Frito the other day.  A little cheese ball.  I try to feed her a variety at the table but she just throws everything on the floor!   How do I get her to stop? And still be interested in new foods?



Good News all around!

Pediatric Surgeon says absolutely no GJ- tube or Fundoplication for Whitney!  No GJ-tube because she has had a bad experience with it and just doesn't like them.  No Fundo because she does not want to do another surgery on Whitney, especially in the same area as her CDH repair where the Gortex patch is.  I also did research on these two options and they both sound terrible! Thank goodness I don't have to stress about those, anymore. The surgeon also said that we can start up the blenderized diet in 2 weeks!  Yay!

They said that if the button comes out then you should immedately put it back in and check placement. Tape it to the skin so it's stable. They told/showed me how to check placment for the Mic-key button.  I would simply connect the straight extension and get fluid in it by gravity or pulling it out with a syringe.  If absolutely no fluid comes out at all then, it is not in place.  Do not feed if the Mic-key button is not in the right place or it will cause major damage and pain.  Go to the surgeon's office and they will replace it.    The nurse was like, you should ALWAYS carry an extra button, BUT you don't have to!  Yeah, didn't make much sense to me either!


We got Whitney weighed and she was 17 lbs. 3oz.  Yay!  So happy she gained weight!  That was with feeding her 800-900 ml's a day!  So the increase in formula helped out a lot!  Whitney seems happier now that I'm feeding her more!

Remember how I said that I think Whitney will always vomit!?!  Well, It started on Monday, I gave her our Goat Milk Formula all night.  I decided to give it to her for the morning feed because I'm tired of her always throwing that up.  And again for the next one, and for the rest of the day she got goat milk.  And.....she did not throw up that entire day!!  So I gave it to her all night again.  In the morning I added some DuoCal to go from 23 kcals to 28 kcals an ounce.  She threw that feed up!  Tried it again the next time and she was fine with it.  I didn't put it back in for the rest of the week...Wednesday, Thursday, Friday, and now Saturday with no vomit!  Amazing!  Guess we'll see the true results on Tuesday at her weight check!  If the lower calories but more volume and no vomit will help or not.  Plus in a couple weeks I can add natural calorie boosters to the formula!

At Whitney's feeding therapy appointment this week, she got to play in a tub of beans!  At first she was nervous of  it, then actually got in and had fun playing.  The therapist said it was to help with Whitney's sensory issues.  She also played with some baby food and rice puffs and dipped some dum-dum suckers in it.  Whitney actually tasted the suckers!  The rootbeer flavor three times and the bubble gum flavor once.  So that day, I went and bought all of that to try it at home!  Whitney loves it, but for me, it's kind of a big, expensive, mess! LOL. 

Beans.  (forgot the type) 20lbs for $10 from Costco.  Cheaper than Pinto Beans.



Toys.



A baby.



cute video 

Lost weight

Yeah, I know, it sucks that she lost weight.  Now she back down to 16 lbs 14 oz.  It's weird because she was even throwing up less.  But I figured it out... I wasn't feeding her enough!  I feel terrible, but I blame the DR.'s! I was feeding her a mere 720 ml's and thought she was throwing up because it was too much.

  But after speaking with the GI doc saying she should be getting 900 ml's  or 1200 to catchup, I starting feeding her 900 ml's a day with the same amount of vomit as before!  I also th He even said that she either needs a fundoplication or gastrostomy-jejunostomy tube (GJ). He's says GJ tube to try first because with that it goes into the small intestines and she has to be on a continuous drip, which does not sound fun! I've heard lots of complications with the fundo and I don't want her to have another surgery.  He also put Whitney on another medication called Bethenachol which helps strengthen the esophagus. So far I don't see improvement but we'll keep at it.

So lets just pray that I just need to feed her more and she will gain weight better and be healthier and stronger. 

 But I'm really hoping that she will gain weight with this larger amount of formula.  She is actually starting to feel heavier to me.  Also she has so much more energy!...Whitney use to take two, two hour naps a day and recently although I try to still stick with that schedule, she's only taking one short nap a day! 

I think she will always vomit because her diaphragm is weak and her sphincter is weak too and of course her reflux.  But I've noticed that she throws up when I make the change from goat milk at night to Neocate Jr. in the morning.  She tolerates it the rest of the day though and doesn't vomit when she's on Goat milk again.

The feeding therapist suggested that we let her play in more food.  Make a batch of Mac and Cheese and let her play in it on a table clothe outside on the patio.  I should try it soon.  She also says that Whitney is not a canidate for an inpatient feeding program because she is still way to sensitive to food and that thier negative reinforcement would make it worse.  Plus the only one close is in Colorado. 

Whitney is now getting 150 ml's (5oz) over a half hour when awake and the same amount but over and hour while asleep.  I feed her every four hours through out the day and night.  As seen by the last posted video sitting in the high chair and seeing food makes her so anxious and she ends up vomitting.  So sometimes we'll just play together in an enclosed area so that I'm not running around with her holding the pump, plus the motion makes her sick.