James and I began this blog at the very beginning of our pregnancy 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.

Wednesday, March 19, 2014

Let's Eat!!!

Big Updates!!

So, we've got some exciting, scary, but exciting news to share!

We've entered Wyatt into a food eating contest intensive feeding program.  It'll be nice when I could say "food eating" anything.  lol.  A week ago I was speaking with another tubie mamma and she had someone from Baylor Our Children's House inpatient feeding program evaluate her son and she looked the mom and said, "I think we could have him off the tube in about SEVEN days."
WHAT?!??  Shut the front door!!!!  I had to stop listening to her message and respond at once.  Seven days!  Holy moly!  I'm not sure what I would do if someone told me they thought Wyatt could be eating by mouth only in 7 days... I think I'd be just as in shock if they'd said 7 weeks.  lol.  I was SOOOO excited for her.  I was also excited for Wyatt.  Our sons have very different and very similar goals that need to be met and if this mom was was told seven days, what would we be told if we had him evaluated?!?

It totally got my head spinning.  Good thing I was on my way into a workout or I might just have exploded right then and there.  lol.

{And I want to note that we've had two very awesome speech therapist, in Sachse and now here in Frisco and they both have helped Wyatt to progress in his eating and drinking by leaps and bounds but in our home health setting, that kind of progress just isn't going to be made on that short kind of timeline.}

I heard about Baylor's program over a year ago and had thought about here and there as I heard more and more but just didn't get that gut feeling it was time.  But last week, I knew I needed to do whatever I could to get him in and soon.  I spoke with our current ST.  I really wanted her support and her to know that we love her and are very pleased about how well Wyatt has done and PTL, she is on board.  And from my limited understanding, we'll still see her when the program is over for a while.  I put in an email to the coordinator of the program and our GI doc.  The coordinator got right back to me, with pretty basic information but information none the less.  I hoped for her to jump on board with, "YES!  We'd love to have Wyatt.  Come in today and get things started, right away!"  But realistically, I knew that wasn't going to be response.  And GI got a referral sent over the next morning.

THE BALL IS ROLLING!!!!!

Wow!  When a mamma wants something for her kids, there's no stopping them!  lol.

I've heard back from BOCH and we have an evaluation scheduled for the end of April.... March 13... the end of MAY.  That stinks because that is SOOOOO far away! Wyatt got bumped up because some families had to cancel and then Wyatt got sick and we had to cancel and now can't in for forever.  But good news is, we are 2nd on the waiting list and apparently people cancel all the time!  And this is just to be evaluated.  I hear the turn around time from the eval to actually being admitted to the program can be quick though!

You see, my tubie mamma friend and I have concocted this awesome little plan where our boys will be in the program at the same time or at least overlapping.  And they are scheduled to enter it at the end of March.  It's a 30 day inpatient program.  So, we will be living in the facility for 30 days with our sons.  Kind of like being in the NICU but we don't get to go home.  So kind of sucky but totally worth getting to the end goal!!!  And if we had another mom there with us, it'd make time go by faster and we would be able to support one another.... and we already understand each others "crazy" when it comes to our sons.  :-)

When I had to call and cancel Wyatt's appointment, it took everything in me.  I wanted to drug him up and just lie through my teeth that hadn't been sick.  I was justifying it every single way I could but when it came down to it, if we got another kiddo sick, I would never know but I would feel horrible just knowing that I could have.  If I, as a mom, found out that someone knowingly brought their kid in contagious and put my kid at risk- I'd be FURIOUS.  How inconsiderate, right!?!  So, in the long run, I couldn't be that person and to be honest, it wasn't best for my little dude.


So, we covet your prayers in this process, as usual.

Wyatt has begun eating a lot more volume by mouth, up to about 50%.  That's amazing and we are praising God's glorious name for this gift.  I will say,with him getting the virus it's gone down a little but he's still doing great.  He's drinking milk, eating purees mixed with oatmeal and oil to make them more caloric and some very little "table foods"- crackers, bars and cookies.

James is pretty calm but I'm frantically excited about the possibilities that can come from this program and I want them NOW!  lol.  So, I need patience and trust from the Lord in His timing.  He's already showing me that through Wyatt getting sick and having to cancel the appointment.  *takes deep breath*

For our insurance hoopla to work out.  I feel like every time I call in, they tell me something different.  Finally someone has put our account under audit.  One person would tell me we've hit our not just our deductible but our out of pocket max for the year.  We haven't paid for prescriptions or gotten a bill in months and now all of a sudden, we've only paid "under $900" towards our deductible.  So, anyway, we should hear back in about a week.

For Wyatt's good health and fast healing.  It's been a week since his nose just started DRIPPING then a day later the fever set in, topping out at 103.8... um, can we say scary.   He hasn't had a fever for 6 days but his nose is continuing to run and he's coughing.  We were told to expect these things or I'd probably be freaking out some more.

Thanks guys!


 Here's some fun Wyatt videos and pictures!

Wyatt plays in the tub with mommy!

Wyatt basically refused to eat for Mrs. Adrianne in therapy but did this after she left.

Wyatt "helps" unload the dishwasher.

Mommy stealing kisses at the Houston Rodeo!

Saying bye bye to PaPa and MeMaw

Wyatt's first concert, Hunter Hayes! 

Playing at a park down the street from Miss Alexis' house in Houston!

Wyatt plays!

Some real quality time with Great Grandmother Madea Davis!

Family Pic at the Rodeo, pre concert!

Wyatt LOVES to give hugs, George steals them frequently!

Sleepy time!

Tired and Sick eyes.  :(  But still all smiles!

Just brushing his teeth with the Hulk!

Meeting up with Aunt Dana at the North Texas Irish Festival.

Turtle Butt!
(A cute one at that)

Bath time FUN! 

Hugs and Kisses or Tic Tac Toe, which ever you prefer! 

Nap time with Aunt Robin

Spikey Hair pre hair cut.

Sleepy time at the ER for a 103.8 fever.  Apparently you don't need to go to the ER until the fever reaches 107 or 108... uh, wow!  That's HIGH but okay.  Duly noted.  :-)  Somewhere at some point in time, I read some where that you need to seek immediate medical attention at 103.5+... wow, 107?  :-) 


1 comment:

  1. Casey....
    Oh dear, I have fallen behind in reading/commenting on this Blog!! Not surprising.... ;)
    Wait. What?! Seven days. Wyatt could possibly--and Lord willing, of course!!--be tube-free in seven freakin' days?! Wow.... ;-D
    "When a mamma wants something for her kids, there's no stopping them!". I can't but agree!! ;)
    "Wyatt has begun eating a lot more volume by mouth, up to about 50%."?! "He's drinking milk, eating purees mixed with oatmeal and oil to make them more caloric and some very little 'table foods'- crackers, bars and cookies."?! Thanks be to God!! ;-D
    I am praying, Friend!! ;)
    --Raelyn

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