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.

Thursday, March 27, 2014

Eight? Ate? or Eat?



For a couple of weeks now, Wyatt has been roaming around and occasionally babbling and the "et" has been coming out.  I'd question him and say,"Eat? Do you want some food?  Eat?"  Or "Ate?  Did you just eat?  You ate some food?" Or "Eight?  Are there eight of something?"

Then this weekend all three of us were playing around on James' and my bed and I was counting something out, "1, 2, 3, 4, 5, 6, 7...." and out of no where and without prompting, Wyatt helped and said "Eight!" very clearly before I could.

We were shocked and oh so excited at the same time.  I did it once more to confirm that he just did that in context correctly and he did!  Yea buddy!  So proud!  So, of course I got out my phone and recorded him doing it again!



We've since added "te" which he says in the tens place!  And he'll recognize the letter "B".

Progress is progress and we are grateful for every stride being made by our little miracle!  PTL!!!



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?  :-) 


Thursday, February 13, 2014

Dear Feeding Tube, I hate you! Love Always, Casey





It's a LOVE... HATE... LOVE... HATE .....


Oh, I don't know... What day is it? What part of the day is it? Do I love it or do I hate it? What am I talking about????? 

Wyatt's G-tube (feeding tube). It's Feeding Tube Awareness Week. I wanted to blog last year this week but did not. I never got a round to it. Here goes my attempt to inform, teach and maybe just give you a glimpse into what it's like to have a kiddo on a feeding tube. :-) 


Just to recap, Wyatt started with an NG tube (Nasogastric intubation). This was a small rubbery tube inserted through the nose, down the back of the throat and can dump into the stomach or lower at the opening of the intestines... and and maybe further? I don't know really, I just know those two because that's what we experienced with Wyatt. 

Wyatt with his NG tube (the yellow one) at about 2 months old. He was still in the NICU at this point. 


Wyatt after having his g-tube placed. 



Gosh, it looks so big on his little belly! 


I can't remember when Wyatt actually got his NG tube, day 1 or day 5 or later. That first week or so is a blur now. He did have what they called TPN for nutrition for a long while. The NG tube has pros and cons. Here's a short list. I'm sure there are many more and medical reasons on both sides that I'm not listing and I don't know about but this is just my personal experience and opinion. :-) 

PROS: It's nonsurgical, it's more temporary, the child is most likely taking in some food/milk by mouth and this is just the get the rest in.

CONS: It is temporary, which means it can come out easily and depending on where it needs to "dump" depends on how easy or hard it can be to place back in. When Wyatt needed his to end at the opening of his intestines, the NP's had to listen and push a puff of air through and even then would usually call for an X-ray to make sure. With the NG tube, it needed to be taped in place to his face. I don't know about you, but I like to look at Wyatt's face, all of it and having these big pieces of tape all over! 




We discussed Wyatt coming home with the NG tube with a few different doctors, NPs and nurses, I had mixed thoughts about him coming home with the NG tube and the risk that can go with it. Looking back now, I'm happy we didn't. I was just so hopeful that he'd begin drinking from a bottle and we wouldn't need to go the surgical route. But...


Wyatt ended up having surgery to place a g-tube or g-button (gastrostomy tube), whichever you'd like to call it, around 100 days of life (and in the NICU). I don't know if I've ever been so scared in my entire life, sending my baby boy back into surgery. I wanted to hold his hand the whole way. I did not want him on the vent. Anyway, back to feeding tubes. A Mic-Key Button was placed. 




There was some talk amongst the doctors about Wyatt having a G-J tube (gastrostomy-jejunostomy tube) and/or a Nissin/Fundoplication done. I am thankful neither of these happened. 


G-J tube: From my limited understanding of this, it's just like a regular g-tube placement but there is a tube on the inside that dumps into the intestines and basically skips the stomach all together. I cannot even imagine what that must feel like, always having an empty stomach. It can't be comfortable. But I also know that this is absolutely necessary for growth, development and even survival. This was not the case for Wyatt. 

Nissin/Fundo: Basically, part of the stomach is surgically wrapped around the and it prevents the child/person from refluxing/throwing up, ever.... not just when eating and drinking are concerned but EVER. Not when the kid is sick with a bug or food poisoning but always preventing throw up. And from what I've heard from parents who kiddos have this, it's gut wrenching to watch their kid try and try to vomit and not be able to. A reason to have this done is to keep the person from aspirating (when food/drink enters the lungs). This can be very dangerous. 



Wyatt had a swallow study done when he was about 6 months old before we began trying purees with him. The study showed, even while he was refluxing like crazy, he did not aspirate. Praise the Lord! 


About a month or so ago, I called the surgery team at Children's because Wyatt's button just kept leaking and was wondering if there was anything we could do. I asked about a different kind of button and they said it's worth a try. What works for one, might or might not work for another. So, we ordered the new one and I do like it more. It's softer, lower profile but it does still leak. Oh well, I guess we're a case just that leaks. Lots and lots of button pads needed. :-) 

Here is a comparison of the two:

Wyatt now has the one on the left. 


Here's a video of what a typical feeding looks like. Sometimes Wyatt reads books, plays with puzzles or just sits with me and we sing or just chat. :-) 



I do this about 6 times a day.  Sometimes I give him a water flush.  We also feed him by mouth a few times a day- sometimes successful and sometimes not so much.  Wyatt also gets connected to the pump once he falls asleep for about 3 hours.  

Just in case this is your first time reading our story or you missed a post or something, Wyatt is fed a blended diet. Instead a purely formula, I daily blend up food and that's what his main source of nutrition comes from. 


Wyatt is eating purees and drinking liquids by mouth. It's a big roller coaster ride- some good days and some bad days. Even on the best days, he still does not eat or drink near enough to not have to use his button. It's so frustrating. I just want him to not have this struggle, ya know. And notice that he's eating purees. He is still learning how to take in some crackers and move it around his mouth without gagging and throwing up every. single. thing in his stomach. It's such a tough balance, pushing him to try and learn and wanting him to keep it all down. He needs those calories. Every single calorie counts, still. He also still needs quite a few teeth to grow in. They're coming but it's slow going. If only there were a magic food or blend that would make his teeth come in more quickly! 


So, I've got this tubie momma friend, Robyn, that I go to for advice, ideas, support, encouragement, to vent, to share and I can only hope be all these things as well. She's one of a small group that I trust to really "get it". I've also got some really good friends that are there for me in prayer, support and encouragement as well. And they really engage and listen and support and come close to getting it, as much as they can and I am SO thankful for each of them for being there for me. God really has blessed me with some amazing friends to walk with. :-)

Robyn blogged yesterday about her sweet tubie son, Asher. God has gifted her writing and part of what she wrote, explains it better than I ever could with more grace than I could. So, I've copied and pasted her frequently asked questions portion. To read the entire blog entry, click here


_____________________________________________

Here are my top 4 things I would NOT recommend asking or saying to a mother of a child with a feeding issue or feeding tube:


1. When will he/she get the feeding tube out? 

This is #1 on this list for a reason! This is the golden question I would love to know the answer to myself! Most of the time the tube is not in by choice, and so it's up the the child, when they decide they want to eat/drink. Sometimes, it's a medical issue and that is up to doctors. But, often, it's a painful waiting game. To me, asking this question just piles on to the many times I've asked and hoped for that answer myself. 


2. Will he/she struggle with eating his/her whole life?

Again, we hope not. We don't know. This is just not a productive, sensitive question…no matter how well meaning. 


3. My kid is a picky eater too. It's just how toddlers are. 

It's just not the same with tube fed kids. Kids with tubes and feeding issues may be toddlers, and that may play a role. But it just can't be compared to a child who knows how to regulate their eating/drinking on their own and who is growing at a normal, healthy rate because of it. Many tube fed kids missed out on learning how to recognize, and regulate their hunger as young babies. So, they are having to learn about that in a different, unnatural way. 


4. Giving advice. 

This is a very tricky area. I would say proceed with caution on this one. As in, don't go there if you can help it. It would be like me giving advice to a lion tamer. I just don't know anything about that except what I've read or seen, which is nothing like the real experience, I'm sure. (And, let's be honest, I really haven't read or seen much on that!!) 



What do I recommend you say/ask to parents you know are dealing with a feeding tube or feeding issue and you are wanting to know more about it? Glad you asked! 

1. How is he/she doing? (Just in general, let the parent decide to go into feeding details.)


2. What is he/she working on in therapy? 


3. How is eating/drinking going this week? 


4. How can I pray for you and your child?


___________________________________________




It's me, I'm back. I told you she's good and gracious with her words. :-) 


A day in the life of Wyatt? It's ever changing. One day can almost feel normal and the next I wonder why we even bothered leaving the bathtub or why bother washing the floors or clothes when he's just going to throw up and throw up some more.... and more. 


I try not to let life revolve around feeding Wyatt but I'll be really honest when I say, our lives do revolve around feeding Wyatt. It's the gift God has blessed us with. I mean that when I say "gift" and "blessed" because Wyatt is a precious gift and we are so very blessed by him. No, it's not always easy to be a momma of a tubie kid who refluxes and throws up and has therapy 2-3 times a week but I don't think I'd have it any other way. I cherish every milestone and moment we have with him. I dream of the day we can go to Chick-fil-A and order a kids meal, Wyatt eats it and I let him up to go play and then come back and trade in his toy for some ice cream. And the entire time, I don't worry one single moment about him gagging, choking or throwing up. 


I claim victory over that day. I claim victory over the day Wyatt eats and drinks enough food to not have to use his tube once. I claim victory over the day I call the medical supply company and ask them to never make another delivery again. I claim victory over the day we can say thank you and goodbye to our GI doctor. I claim victory over the day we take Wyatt's g-button out and throw it in the trash and NEVER LOOK BACK! I know these days are coming. I don't know when they will be but I know God is faithful and keeps His promises. I stand firm in His word and will work diligently to help Wyatt claim these victories as well. 


This journey is different for all of us but I hope this gives you some insight into what it's like to have a tubie or my tubie at least. :-) 


Happy Feeding Tube Awareness Week!

Thursday, January 2, 2014

A Years Perspective

Yesterday, James and I sat eating in the kitchen and just started listing all the changes that have happened over the past year and it really did give us a whole new perspective on looking at today.

I know I've said it a million times and I can only hope I say it a million more:  GOD IS GOOD.  He always has been and He always will be.  He makes no mistakes and He is in the business of miracles!  We see His beautiful handiwork every single time we look at our son, Wyatt.  This journey has been nothing short of crazy and hard but at the same time full of blessings and joy.  It's a dance, just like the NICU was, two steps forward and one step back... sometimes more, sometimes less and sometimes it's not forward or backwards but just a change of step (if that makes sense at all!)

A years difference with Wyatt:

Every single one of these things is a victory that we can claim in the Lords name.  He has been so good.  We've got a long way to go but I know that we will get to keep claiming victories big and small.  Praise the Lord!!!!  

As a family, we've made some changes too:
  • We no longer live in Sachse.  We are now in Frisco.  We downsized our home but upgraded our neighborhood as well as a better location for us in the metroplex.  
  • We are back at church and in a new home group.  
  • We live closer to more friends. 
  • We live closer to stuff in general.
  • James and I sleep in the same room, in the same bed without a baby in the bed or the room.  We all now sleep much better!
  • We're back to not having any car payments. 
  • Ronix no longer has allergies.
  • I'm sure there is more but I'm just not remembering.  
Overall, life is good.  We are so thankful for the year that has passed and look forward to the year coming.  We know we've got a lot ahead of us but know God is in control.  
Things coming:  
  • Wyatt will begin some language therapy with his ST.
  • Wyatt will receive genetic testing to see if we need to be looking at anything else as well as seeing if the CDH monster has any possibilities of showing up in another baby.  James and I will use this information as well as praying and talking about growing our family and what that will look like for us. 
  • Wyatt will hopefully begin eating and drinking more as well as being able to tolerate more at a time. 
  • And so much more the Lord has planned that we do not even know about!!!  :-)  
We'd love it if you'd please join us in praying for all of these things and praising His name for all of his victories big or small!  And please, let us know, how can we pray for you?!?  



Wyatt had his PDA closed in November and they gave him some pretty good drugs.  The doc said he was probably seeing double here.  :-) 

Wyatt Talking

Wyatt Plays with James

Wyatt plays with mom

Wyatt Plays

His first walk outside after putting it all together!

All. Day. Long.

Friday, December 27, 2013

Merry Christmas & Happy New Year

We have had a wonderful Christmas season and we sure do hope you did as well.  Wyatt is actually learning how to open the gifts.  I think he'll have it down by his 2nd birthday!  :-)
Our 6 year anniversary date to the Celtic Women's Christmas concert.  We had a very nice time.  

What I wanted to be our Christmas card but couldn't figure out how to save it so that it wasn't blurry.  I gave up and just ended up ordering a CVS drag & drop.  It still turned out cute but I prefer to make my own!  

This little stinker was sneaky at taking the ornaments off the tree.  He had to get in trouble a few times before he realized we meant "no touch" means "no touch!"


He loved the bells hanging from the front door.

He also enjoyed chewing on them.

His smile... I can't get enough! 

Always into something. 

Poppy & Nana got Wyatt a slide/swing set for Christmas.  He's loved learning to climb and slide!  He also relaxes in the swing! 
His drinking capabilities have increased A LOT!  But sadly he isn't eating quite as much as he was.  We are praying for him to begin taking in large amounts of table foods, purees and his milk!  We need more teeth for the table foods though.  

Anything and everything is a toy!  

Thanksgiving Day at our house! 


Thanksgiving night it all clicked and Wyatt started to really walk run.  He just started doing circles around the house. He loved it and so did we!  



Wyatt's eyelashes go on for days.  It's ridiculous!

He really is into everything!

And I mean everything.  

Sometimes I wonder why I bother picking anything up with a 17 month old running around right behind me pulling it all out.  And if I'm going to be honest, a lot of the time, I don't pick it up.  Haha.  Oh well... 

BUT I have some organizing goals!  James has been home from work since the day before Christmas so I've been able to just sit and workout some things I would like to implement into our daily lives.  I already made a monthly meal planning calendar.  December was the first month I've used it and it's be awesome.  I plan for the month buy only buy for a week at a time.  That's nice because if we get to week three two and I don't really feel like making what I've got on the menu, I can change it before I go to the store.  I threw away almost no wasted food this month which means we got our monies worth!  Yippie!  
I was going to add the cleaning schedule to the right of the meal planning but then changed my mind, so now I have to figure out what to put there... Hmmm...


Then today I made a cleaning schedule for the day, week, month and year!  I'll print it in an 8x10 and put in a frame and check off each task after I complete them!  Another yippie!  :-)  


Well, that's just a quick update and some pictures.  I'm hoping I'll get back to blogging more frequently.  :-)  



Friday, December 13, 2013

Wyatt says "Hi"


Wyatt apologizes for lack of blogging.  He says he's been keeping mommy very,very busy!  He's doing well though!