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.

Tuesday, June 17, 2014

Feeding Camp Days 20 & 21


I've posted before about how my soul just feels a song.  As I go through these seasons in life, I tend to just resonate with a song and I can listen to it over and over and over.... and over.  Sometimes it's a worship song, sometimes an unknown song I find randomly and others it's a popular top 10 hit.  right now it's Oceans by Hillsong United.  This feeding camp business we're in the middle of has been a roller coaster and at times I do feel like I am drowning but thankfully God is good and so in control.  Knowing and resting in this FACT is what gets me through a lot of things in life.  My hope is that through these trials, I can grow, grow in maturity, life experience, strength but most of all in my faith in the Lord.  That I may become a stronger believer for the glory of the Kingdom.  That God's light can shiner brighter through me.  And I hope that through all this, as Wyatt grows, his heart grow and come to know the Lord and he can use these trials to glorify the Lord too.  That he sees all the miracles God has preformed using him!  I hope you enjoy the song as much as I do.  :-) 
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Wyatt attempting to not sleep.  He pulled back the curtain between his bed and mine.  It's now safety pinned so he can 't do that.  :-) 

I want to say THANK YOU!  Your prayers have been felt, heard and are being answered!!!  The past two days have been so good and oh so sweet for my soul.  Please keep praying!!!! 


Wyatt's intake has increased consistently.... well as consonant as 2 days can show.  :-)  But a victory is a victory!  I'd like to ask for another prayer request though.  Just add it our never ending list.  ;-)  Wyatt still gags easily and when he does he pretty much loses his entire meal.  That meals he lost all that hard work,because eating is very hard work for him and he also loses all the calories he just took in.  It's always so sad and so frustrating to see.  Wyatt is so good about gagging, vomiting and just moving on like it never happened but I know it did.  And we don't get to add more time to his meal.  Once that timer goes off, it's over.  No eating until the next meal.  Breaks my heart for my little guy.  He is working and trying so hard to get this eating business.  It's just does not come naturally for him.  He also still has reflux.  He's a champ with that too.  He's been waking up and before we can even go down to breakfast he's trying to throw up.  And at 7am, there's nothing in his stomach.  So, a lot of work to get CCs of stomach bile out.   As I sit here and finish this very paragraph, Wyatt is laying in bed trying to fall asleep, coughs and vomits what's in his stomach.  *deep breath*  I don't tell you this so that you'll feel sorry for me but to be real and so you know how to pray for us with details.  God is in the details, big and small.  

Riding in the wagon with Grant!

I also have results for his gluten tolerance testing.  To understand all the medical lingo, I simplify it as much as I possibly can.  LOL.  So here goes my best attempt at explaining what happening.  When they ran Wyatt's blood, there are basically two test, we'll call them test "A" and test "B".  Test A, from my very limited understanding, is the 'deciding factor".  His came back negative for gluten intolerance = not allergic.  Test B came back positive.  And from what I gather, this doesn't usually happen.   I asked if it could be a false positive and the doc said there's always that chance.  But she wanted to call and speak with Wyatt's GI doc (whom we LOVE!) and see what she thinks.  Dr. A (the GI doc) wants Wyatt to stop taking one of his meds.  Apparently this med can have a negative effect after some amount of time and she's hoping that will help the vomiting.  She also requested the doc here order an upper GI test to see if maybe Wyatt's stomach is sneaking up through his diaphragm- pushing more on his esophagus as well as not allowing his stomach to empty properly and causing his stomach to physically be smaller.  The upper GI us basically a swallow study.  He'll have to swallow barium and they'll take a video x-ray while he is doing so.  He had one of these when he was about 7 months old.  This was before he was drinking anything at all by mouth.  Needless to say, it was awful.  

Always climbing.  Such a boy!  :-)  

So, depending on how Wyatt reacts to not receiving the one med and the upper GI test, he may be put on another med and potentially need to be scoped so they can see from the inside what's going on.  We currently have a routine appointment scheduled with GI for July 1st and that may be moved up to sooner if needed.  His eating is progressing and we want to help Wyatt in any way possible for him to be able to keep all his hard work in his body (until it comes out properly of course).  :-)  

Giant soccer balls are awesome!!!

I'll be honest, I'm not thrilled about the swallow study or the scope.  I'm really hoping the scope doesn't have to happen.  That requires Wyatt to undergo anesthesia and put on a ventilator.  Not sure if that'd equal a night in the hospital or not at this point. But what's one more night if we need it.  ;-)  

More wagon rides with Miss London!  

I also want to add, I've met some pretty amazing families while I've been here and our time isn't even up yet.  Some of the stories here are miraculous, heartbreaking, inspiring and very difficult all at the same time.  I am thankful for these stories God has written as well as ours.  

Thank you again for praying with us!    

"fear not, for I am with you;

be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand...

For I, the LORD your God,

hold your right hand;
it is I who say to you, “Fear not,
I am the one who helps you.""






-Isaiah 41:10, 13


3 comments:

  1. I love following these updates! PRAYING!

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  2. Praising God for the strength He's giving you, and the light He's shining through your journey. Love you!

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  3. Casey....
    "My hope is that through these trials, I can grow, grow in maturity, life experience, strength but most of all in my faith in the Lord. That I may become a stronger believer for the glory of the Kingdom. That God's light can shiner brighter through me." I really needed to read those words!! ;)
    "Wyatt's intake has increased consistently.... well as consonant as 2 days can show. But a victory is a victory!" Thanks be to God!! ;-D
    I am so very sorry that Wyatt is still gagging and vomiting!! No fun. And I am so very sorry that Wyatt has been struggling with reflux issues!! No fun. :-(
    Love you later, Raelyn


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