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 

New trial and the Goat Milk Formula Recipe

going to try a new trial and hopefully not error this time. Whitney is still vomiting once or twice a day.  No matter how consistent I am. No matter how inconsistent I am.  No matter how much or how little I feed her.  No matter how fast or slow it goes into her.  No mater how far apart or close together her meals are.  So the one thing we have been doing this whole time, the common denominator, is the Goat Milk.  So for the next seven days, starting tonight, she will be feed only Neocate Jr. unflavored.  Just a trial to see if she is allergic to something in that.  She has been fed our homemade Goat Milk formula for about 9 months. The homopathologist said it was good for her.  Some speech therapist say it's good.  Wish us luck!?


Ingredients:

12 oz Raw Fresh Goat's Milk
20 oz Organic Rice Milk
1 tsp. Nutritional Yeast
1/2 tsp. Probiotic
1 tsp. Flax seed oil
1 tbsp. Blackstrap Molasses
single herb Slipper Elm
IO-Plex-A-Dine Liquid

Formula equals 18 kcal per oz

to thicken to Nectar consistency for a bottle feed, add 1 tsp of grounded up organic rice or oatmeal cereal for everyone 1 oz of formula. equals 25 kcal per oz.

If you add one scoop of duocal to a 4 oz bottle it makes the total 31 kcal per oz with cereal.


The pediatric surgeon said that she's not ready for me to do the blenderized diet/homemade formula. The Dr. is just concerned that it will clog the tube. The tube cannot be replaced till the end of October (2 months after surgery).  So, if it were to clog with thicker formula, we couldn't use it till it's able to be replaced. The surgeon is always saying how she had OCD (obsessive compulsive disorder) and that she'd rather prevent things then have to fix them!  I'm perfectly okay with that and love that she has OCD! I also learned how to check the water level in the ballon.  It's pretty easy, just make sure the baby is holding still or do it while asleep.  Her's needs about 5 ml's of water in the ballon.  They are ordering me and extra button so that I will have one on hand. They also gave me a sponge with silver nitrate in it to put around Whitney's G-tube to help decrease the granulation. I replace it everyday after her nightly bath.  She said she might need to use it for a month or so.  We will be seeing the surgeon every 2 weeks for her to checkup on the g-tube.  Thats a lot of visits and a long drive!

RELATING to WHITNEY...
I remember that while I was pregnant with Whitney, during that last month or so,  I had really bad heartburn.  I could hardly sleep.  I would several tums at night and sleep practically sitting up!  I can tell Whitney's reflux is really bugging her and I hope the prevacid is working.  The GI nurse says it's a good amount for her weight. 
 Also, one time I ate at Olive Garden and had bad heartburn for the next two days!  With that bad expericence it makes me not want to go back!  Anytime I have a bad expericence with food, even I get and aversion to it.  In general, I am a picky eater and have not even tried a lot of differents foods simply because of the way it looks or smells or the textures.  I hate the smell of pickles, I hate the looks of a tomato, I hate the texture of bananas, just to name a few.  But with time and encouragement I'll try new things...
So I can totally understand why Whitney doesn't eat, it makes her feel bad!  It's up to me to help her enjoy eating.  That's pretty much what my life is about.  I wonder what I would be doing if I wasn't always focused on her feeding issues.  It seems like a strange hobby but I enjoy learning about this stuff.  Even though it's weird to not eat, I mean we have to eat to survive! I still understand her. 

I tape the extension to her diaper

Wearing the silver nitrate sponge

As a side note, for all you mamma's with NG tubie's, don't let them have that for very long. I personally regret Whitney having that thing for 9 months!  Not that it was my choice to have it that long, but it was my choice to get the Gtube.  I really didn't want it but Whitney has done so much better orally.  She's able to eat and not gag!  I think the NG tube contributed to her oral aversions.  It's okay for short term (3 months).  But I do think think the G-tube has made her reflux worse.  We are working on that.   Just do lots of research and it won't be scary.