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.

Thursday, May 29, 2014

Feeding Camp Day 2

A pano of our room until tomorrow.

Alright, a FULL day, literally on the books.  It's been so busy but a good busy and just a good day in general. 

Wyatt interesting way of playing his favorite ipad game.

I'll start with post blogging last night.  We didn't bring our feeding pump from home because we were told we wouldn't need it and we'd use Baylor's.  No biggie.  But once we got here, we realized that they use the Kangaroo pump.  The kangaroo pump isn't very blended diet friendly.  The nurse suggest I just bolus in his night feed with the syringe until James could bring our pump and bags.  In my sleepiness/laziness last night I decided to connect Wyatt's extension tube, plunge in some blend and then just leave the tube connected so that I wouldn't have to mess with him as much while he's sleeping.  Good idea, right?!?  I thought so... until my alarm went off to give him some more blend.  I laid there a minute to "wake up" some and Wyatt wiggled around.  And what do you know, he pulled his tube out.  So our first night at Baylor I pull the biggest tubie mom fail!  I won't make that mistake again!  I promise! 

Our 4am snuggles. A little blurry of course.  That's about how my brain was functioning at the time.  :-)

Wyatt slept great until about 4:30am, woke up and didn't want to lay back down so he got to lay with mommy for a while and then he gladly went back into his pack-n-play and slept until about 6:30.

Wyatt's first feeding therapy session was at 9 this morning.  I was a little concerned with his appointment time but Wyatt did okay.  He didn't get grumpy before hand.  I cannot feed Wyatt any food by tube or mouth when he wakes up.  He can drink water though.  And I can give him 1 oz of blend after a feeding session until his volume goes up in the sessions.  He didn't eat or drink much during his breakfast time.  They were offering small bites (much larger than I usually offer) of a fruit nutri-grain type bar.  Foods like that take Wyatt absolutely forever to chew and swallow.  So, he ate under an ounce but did a lot of work to eat that ounce.

Wyatt in a feeding session.  

We then played outside, walked around and played some more in the room until 11.  Wyatt's feeding therapist did her official evaluation and we got to talk some.  I don't know how much he actually but he definitely ate more than he did at breakfast.

He was refusing a bite so he lost his toy.  He got it back once he took the bite. 

At 11:30 Wyatt has his first session with OT.  His fine motor skills are pretty good for his age.  But he will receive OT to help him with his eating skills.

Wyatt playing.

At noon, Wyatt had his official lunch with ST.  He did good there too.

More playing. 

Wyatt took a nap and poor boy, I had to wake him up to go to his snack at 3.

Right before I had to wake him up for his snack feeding session.

He had another good session.  Dinner was the best of all.  He took in 4.5 ounces of milk and puree by mouth!  Yea1  God Wyatt!  :-)  He did good with the time as well.  That was one of my concerns yesterday.

"Car goes BEEP! BEEP! BEEP!"

As we went through the day and the feeding sessions, I had some concerns.  I also know the therapist have to "figure" Wyatt out.  Test his limits and see what he can do... all the things I already know.  So it hard to sit behind a mirror and not be able to do anything at all.  I do like that they are adjusting already.  The staff has listened to my concerns and I feel very heard.

Wake up, diaper change, find cars to play with and play. :-)

For the time being, Wyatt will no longer receive bites of food.  Just purees and milk.  As much as we want him practicing his bites, we also need him to take in calories and hopefully all by mouth!  The first couple of feeding sessions, his puree wasn't being mixed with oatmeal or oil, both super calorie boosters as well as thickening it to make it better.  I'm also going to have James bring up the spoons we use at home to see what they think.   My only concern now with our schedule is that 3 o'clock feeding.  I don't want to wake him from nap every day.  we'll see how tomorrow goes.

Lots and lots of playing! 

We also change rooms tomorrow and I can really set the place up and make it as comfy and homey as possible.  Not sure if I mentioned this yesterday or not but we'll be in the same room my friend was in and we have half her stuff so it should be good!  :-)

We also ran into Wyatt's pulmonologist, Dr. Sah.  He cares for patients here too.  He seemed happy to see Wyatt and of course asked how he's doing even though he's not officially one his patients while we're here.  :-)  

1 comment:

  1. Casey....
    "They were offering small bites (much larger than I usually offer) of a fruit nutri-grain type bar. Foods like that take Wyatt absolutely forever to chew and swallow. So, he ate under an ounce but did a lot of work to eat that ounce." "Dinner was the best of all. He took in 4.5 ounces of milk and puree by mouth!" God job, Wyatt!! ;-D
    Hugs and prayers!! ;)
    Love you later, Raelyn