James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.

Monday, September 9, 2013

Blended Diet for my Tubie!

College Colors Day!

For a while now I've been wanting to give Wyatt a more natural diet.  I've hated that he's "allergic" to milk and had to have a totally. 100% man made formula.  I just want what's best for him and I know God made is always better than man made.  We aren't totally organic, raw or clean eaters in our home but something in my gut has been telling me for a long time that once we can get real food into Wyatt, the better things will get when it comes to his eating and reflux.  

Playing at the playground in our new neighborhood!

To refresh you memory because I know it's been a while, this is what Wyatt's diet has looked like....

30 calorie formula.... He was getting about 1/3 breast milk mixed into the daily intake up until the end of June but I stopped because we were getting extremely low on supply as well as we were cutting it close on the expiring dates.  I would also adjust his formula to what I thought was 25 calorie because he wouldn't tolerate the 30.  I also recently found out from the dietitian that my math was flawed and he was really getting about 27 calorie milk.  Would would have thought 3 calories made such a difference, but it did.  

Getting a breathing treatment while sleeping.

On an ideal day, Wyatt would get 135 mLs  (4.5oz) of formula once in the morning and once in the evening at a rate of about 100mLs/hour.  He would also get 450mLs (15oz) continuously at night, totally 9 hours at night.  Throughout the day, I would offer Wyatt water and formula to drink by mouth.... hahaha on the formula.  I didn't offer him any because it was NASTY!!!!!!!  yuck!  But water, coconut milk and an occasional watered down juice, yes.  :-)  His goal was to drink 3oz a day.  Sounds easy right?!?!  No, not for us.  He just doesn't know that he needs to drink anything.  We get grams at a time down him.  As far as eating, his goal was to eat 4 oz of purees that had either avocado or coconut oil added to up the caloric value.  Some days we hit our goals and some days we did not.  Sometimes it was because he wouldn't take in what he needed to and other days it was because he threw it all up.  It was frustrating.  

Can't wait to swim at our new pool.

It also got difficult to keep Wyatt still enough for his day feedings.  He was connected to the pump for over an hour each time.  He is a typical, active one year old BOY!  It was a fight that I didn't want to fight because that's so unfair for him.  Who asks a 13 month old to sit STILL for that long at one time?!?  I don't even want him to.  So, I made some adjustments.  Instead of using the pump during the day, I would use a syringe and push in 2oz at a time, multiple times a day to get in all his formula.  He would only need to be connected about 10 minutes or less at a time.  It's perfect to sit with some books or watch a short video (educational of course!).  

drowning in toys

In early August, I called Wyatt's dietitian and gave her a heads up about my desire for Wyatt to go on a blended diet.  She seemed a little hesitant and wanted to talk to his GI doctor first.  I was in agreeance and was happy to wait until our appointment to speak in more detail at the end of the month.  I also emailed his GI doctor to let her know and a nice long list of questions to dietitian, so she could be prepared for us.  :-)  I'm sure they consider me to be "that mom!" and I'm okay with that because Wyatt comes first.  I'm not okay with just doing what is easiest for them or us- I want what is best for my son.  And following the natural progression that a normal kid follows, eating wise, is what is best.  Real food!  I also read so many stories of kids getting on a BD and just coming off nights feeds, no more meds, no more reflux, growing leaps and bounds, actually tolerating higher volumes at a time and even coming off the tube!  Who wouldn't want ALL of those things!?!  

love my puppy

In our appointment, they had their hesitations but ultimately supported me in my decision, thankfully.  Our speech therapist came to the appointment as well and gave her opinion supporting the BD too.  It also made it easier for her to hear from them, what they wanted for Wyatt instead of me being the go between.  :-)  

Where's Wyatt?  In the laundry room!

So, my dad came down (he's a dietitian as well) and helped me figure out everything I needed for Wyatt- to meet all his nutritional needs.  My MIL also was in town and she gave us an early Christmas present, a Ninja, to help with blending his foods properly.  With Wyatt's dairy "allergy", which I'm not sure is a real allergy anymore, it was difficult to get in enough calories and protein without making the blend just as many ounces as he needs for milk.  A goal was to cut back on ounces that we can have higher calories/ounce to get him off this night feed, eventually!  It's also a little overwhelming!  So, to make things a little easier on myself, I decided to use purees with his new Neocate Junior Vanilla flavor formula.  :-)  It has higher calories/oz and doesn't smell and taste like complete butt.  

Where's Wyatt?  Playing in the dog's water.

I heard of a lot of families just going all in and giving the blended diet all at once but I just wasn't sure with Wyatt and to be honest, I was scared!  I started with just ONE little ounce a day.  I did that for like a week and when he hadn't thrown up once after that feed, I would make it 45 mLs and then we had a few VERY, VERY bad nights in a row.  James and I were exhausted.  Wyatt was throwing up multiple times a night and a few of them were very large amounts.  It was not pretty.  And in the middle of the night after laying back down (wide awake of course) I said, "No more" and I blended an entire days worth and gave it all to him throughout the day.  He did GREAT!  He didn't throw up and acted fine.  The best part.... his night feed is down to 4 hours instead of 9!  Holy crap-o-la!  He didn't throw up last night and he slept all night.... AND SO DID WE!  It was glorious.  I know it's only one day and we need to give it some time but so far, so good great!!!  

Bedtime with Daddy

I woke up praising God and still am.  I'm so excited for this new blended diet!  I feel good giving Wyatt good food and not just formula.  

Blended Diet!

Quick FAQ:

I use the "My Fitness Pal" app to log everything.  It's perfect for this.  I set his goals for each nutrient and know when he's gotten everything he needs!  

(We are currently giving Wyatt small amounts of dairy and seeing if he is truly allergic- it would make things A LOT easier if he can have some whole milk!)

Helpful New Med - used for increased hunger but Wyatt's pulmonologist said it will help with his breathing as a preventative! Double duty! 

VitalStim - Just started using this in his speech therapy sessions

At our new playground!

To be completely off the night feed. 
For Wyatt to be able to tolerate more food at a time (more than 2 ounces... hopefully, eventually to get him to get to a more normal 8-10 ounces!)
To not throw up and to get off reflux meds, two in particular.
To take in more by mouth.  

What?!?  You think you can beat the Aggies?  Laughable!

I'm too cute for words!