Feeding Camp Days 29 & 30

The end is near.  These last couple of days have been difficult to go through.  I'm just ready to be home.  Wyatt's been great but I think he's about had it too.

I am SOOO thankful for this place and our time here so please don't take my negativeness the wrong way.  I just miss my husband and my home!

We are all ready.  James and I know how to follow the protocol and Wyatt knows the expectations. PTL!!!

Yesterday and today have been great.  Wyatt is eating.

James is on his way back from a busy work week and will be here bright and early to pack us up while Wyatt eats breakfast and gets discharged.  We should be home by lunch!  Once we're home, we'll unpack and I'll get my grocery list started because they are only sending us home with that day's food for Wyatt.  :-)  

On Sunday, my parents are bringing Ronix, our doberman, back and our little family will be home under one roof.  :-) 

Meet Miss Liny!  She was Wyatt's first feeding tech.  We had her teaching us a lot throughout the month.  

I put this outfit on Wyatt before breakfast yesterday (day 29) and this picture was taken right before I took it off for his nightly shower.  That's huge.  lol.  

Meet Miss Cammy, Wyatt's Speech Therapist.  We are adding her name to the list of AWESOME STs Wyatt has had over the past two years.  

Meet Mrs. Cyndi, Wyatt's Occupational Therapist.  She can also be added to the list of AWESOME OTs Wyatt has had.  :-) 

Meet Mrs. Laura. Wyatt's psychologist and my first go to!  

Wyatt fell asleep watching TV before dinner time today.  This is his usual nap time but I put him down for a nap after lunch, instead of after snack, because he was TIRED.  He slept for 20 minutes, of course.  So, this might have been another 15-20 minute nap.  And he then of course was asleep for the night by 7.  :-)   

We didn't hit our goal of Wyatt not using his g-button anymore BUT he gained the skills, as did we, to get him there and quickly.  Thank you so much for all your prayers and we ask that you keep praying.  We can use all we can get!  God has been gracious in so many ways.  We've met some amazing families and I feel I've made a few really good friends.  Wyatt has grown and developed a lot.  James and I know we can get through anything (we actually already knew that) with God's strength and endurance.  

Thank you!  Thank you!  Thank you! 

Marshall spins with Wyatt!

It's a big deal that Wyatt is catching air.  He couldn't do that before!

Feeding Camp Days 27 & 28

I'm tired. 

I'm ready to be home.

If James weren't so busy this week, I would consider checking out early! But He is busy and that is not an option, probably for the better.  :-)  I also love our ST and wish we could take her with us!  Wyatt has 2 more days with her.  He won't see her on Friday.  :(

It's blurry but he's still cute.  :-) 

Yesterday Wyatt had a good day.  Not as  high as Friday but still good.  He did have a large vomit during a meal.  He got choked up on a piece of banana.  

He loves his chair.  He crawls all over it.  

Today, Wyatt had an even better day than Friday. 21.6 ounces.  That should be right around 800 calories if my estimations are correct.  :-)  

We had a play date in Grant's room with Marshall.  We all go home this week! 

More sitting in the nap nanny.

Today in speech, Wyatt tried mashed spaghetti.  That's huge!  Before coming here, this is something he would just pocket or gag and throw up. He did good today. No vomit and no gagging.  

Okie Dokie... This is basically what Wyatt has been eating.  Crap.  lol.  Not all of it but a lot of it.  So, once we get home, I will be making some changes to the brands he is eating, not the meals but I am hoping to lower is sodium and preservative intake by a lot!  OCH does not have an oven or a stove so everything it prepares has to be microwavable.  I didn't realize that until today.  While this is not my preference at all for Wyatt, it's what has started him on his eating real foods so I'll take it.  If this were long term, I'd ask to change to a more organic/natural diet but 30 days is just 30 days.  I'll get it better at home.  

Here's an example of what Wyatt has been eating and what we'll follow when we get home.  All of this is blended.  And I will add and change things up once we get comfortable with the routine.  Wyatt has very willing eating everything on this list, veggies included.  :-)  

THREE MORE SLEEPS HERE and we will be in our own beds!!  :-)  

PTL!!!

Feeding Camp Days 25 & 26

To kill time around here, especially on a Saturday morning, we do lots and lots of walking around the building.  Riding elevators up and down is especially fun.... pushing the buttons to make the doors open and close is even better!!!

We had a good weekend.  Wyatt continued to take in a higher volume of food.  Not as high as Friday but still a pretty good amount.  PTL!  

Waiting patiently for the door to open!

We have four full days left and Friday we will probably have breakfast and will hopefully be home for lunch!  That's my hope.  I haven't actually gotten word on that but from what I've seen with other families leaving, that's how it works.  

Wyatt also loves to go into the chapel and look at all the pretty windows.  

But FOUR days to get down to business folks!  He's doing great but we are praying for continued high volume eating as well eating skills building!  I'm praying for good rest for Wyatt and myself both.  He's not slept great the past couple of nights and lack of sleep effects eating.  And when I'm tired, I'm not at the top of my game for feeding him.  

running full speed at mom.

I got to go home for the night last night while James stayed with Wyatt.  It was a much needed break and rest.  I still had some work to do.  James and a couple friends painted Wyatt's room Friday night.  So thankful that his room is not stark white anymore.  We kept it the same color it was in the old house.  It's still awkwardly arranged of course, only because of the furniture we keep in there.  But I think I finally found a decent arrangement last night while moving it all back into the room.  

We also walk around to look for friends! 

I got to see the office in person as well.  It's looking so good.  I am so excited for it to be finished and for James to have a place to work.  :-)  

Chewing on cars. 

Okay, so here we go.  The final leg of the race.  Again, we ask for all your prayers for our little guy and we are SOOOOO thankful to everyone that is following our story and praying with us.  So thankful!  

A late night pano of Wyatt's freshly painted room.  The twin bed on the floor is missing it's white comforter and frame/headboard.  I think I finally found one that will work and match the crib! :-) 

James sent me this today,  He was pretty tired but refused to stop playing.  lol.

Fell asleep in my arms again!  He is one tired kiddo!
Those red bumps on his face are from him chewing on EVERYTHING and his skin having lots and lots of moisture (drool).  We are trying to keep it as dry as we can.   

OH yeah... Wyatt's vomiting has been minimal!  PTL!!

Feeding Camp Day 24

21.3

What does that number mean you ask?  Well, mark this day down in the history books folks because that number represents a Wyatt eating/drinking milestone.  He has never taken in more than 20 oz of food in one day.  Insanity.  I have been walking on cloud nine all afternoon.  Praise God for this jump.  

He's taking me somewhere! 

If Wyatt gains weight over the weekend, we will start cutting back this ridiculous night feed he is on.  I am so ready for that.  I hate the night feed.  It's not natural to "eat" while you sleep.  I want him to wake up and feel that hunger.  Anyway, so thankful for today.  For the first times since the first few days, I can kind of see what this will look like for our family.  I can envision his g-button being used less and less each day!  And my hope to have it out in the Spring is beginning to become real.  

Mommy, you're so silly!

Please pray for his continued eating.  For his volume to continue to increase.  For him to not get tired of the process and "stand off" or figure out other tactics.  I am so, so thankful for all you and all of your prayers.  Just grateful!  

Weeeeeeeee!  Down the slide!

I have another request.  As a mom of a little boy that from birth has had to have nutrition pumped into him in some form or fashion, we don't know any different.  We don't have another kid that ate.  This is all we've known.  It's not been easy.  I'll be really honest though, I cannot not imagine knowing normal and then having to go through a feeding issue.  I've gotten to be close with some of the moms here and all their stories are so different yet the same.  Our kids struggle to eat.  So when they're having a hard day because their daughter is crying her eyes out at the sight of the high chair or their son refuses all but a couple of bites for the entire day or vomits everything in their stomach in the middle of hall, my heart hurts with them.  Please pray for them and their kiddos too.  

"Grant, you're so silly!"
{Grant is also a fellow future Aggie! Gig'em!}

I am so thankful for all the friends I have made through this process, not just at OCHB but being a tubie mom in general.  This can be a very lonely road to travel but it's nice to have buddies that know the route to help you get to where you're want to go.  (So corny, I know.)  

Go, Go, Go! Mr. Squirrel! 

By the way, at lunch today, Wyatt ate 6 ounces and then at dinner he ate 6.2 ounces.  I thought maybe lunch was a fluke but dinner told me it wasn't.  Hopefully the day isn't a fluke.. lol.  No, I know it's not.  God is good.  Today felt victorious.  God's miracles continue to amaze me!  :-)  

Wyatt, Marshall and Grant!  The 3 OCH amigos! 

Mom, let's slide! 

Run! Run! Run!  I'm going to getcha! 

"Mommy, look at my face!  I've got something to tell you!"

"Yeah, that's right!  I really did eat 21.3 ounces of pure calories today!"

Sleeping Handsome! 

Feeding Camp Day 23

Oh. My. Word.

I. Am. Exhausted.

You know those days that are coming to a close and you're just so thankful for tomorrow being a new day?  Yeah, it's been one of those days.  Thankfully it all went by pretty quickly.

Wyatt woke up at 6:30 this morning after not falling asleep until 9 last night.  We didn't need to be anywhere until 9 o'clock. I was so hoping he'd just know and sleep in.  No such luck.  Haha.  I'm not sure if he just woke up or if our call button randomly beeping a couple of times around 6ish made him stir and woke him up.  I know it woke me up.  lol.  Oh well, whatcha going to do?!?  (Besides tell the day nurse who can do nothing about it and promise that particular night nurse won't be back tonight.... she also walked into our outer room last night, flipped on the light and then asked if that's going to be a problem.  Wyatt wasn't asleep just yet, so yeah, it was a problem.  He jumped up and started telling her his alphabet.  I requested she not do that the next time she comes in.)

I feel like I sound whiny, I'm sorry if I really sound that way.  It's kind of how I feel.  lol.

So, Wyatt and I hung out until it was time to roll on out of here.  I stopped by the nurses station to sign some paper work that we were leaving the premises.  Got Wyatt loaded in the car, looked up the nearest Starbucks (Yea!) and there's a knock on my passenger window.  She forgot to hand me the paperwork that goes with us.  Good thing I love my over priced coffee or she would have missed us totally.

My venti frap!  

So good that I took 2 pictures.  lol. 

Playing in the waiting room.  Before being at OCH, I would not have let Wyatt out of the stroller let a lone play with the toys.  

Waiting to drink barium. 

Post crazy, crazy crying waiting on the right tools for this job.  Hoping he gets used to the machine being right over him.  

PTL for wifi! Super Why! to the rescue!

After an hour, we had to change it up a bit and get creative! 

Snuggles post "nap" before snack time.

He fell asleep in my arms during his breathing treatment. 

Sound asleep! 

Totally felt Jesus' love for me at Starbucks.  I ordered a grande frap and they upgraded it to a venti, no extra charge.  Whoop!!!!

We get to "Big Baylor" and get checked in and called back quickly.  We get into the X-ray room and didn't see the machine I expected to see.  So, what Wyatt had at 7 months old was a swallow study and this is an upper GI.  The swallow study is a modified study while the upper GI is the real deal.  Wyatt was not too fond of the big scary spaceship looking machine.  And then I tried to feed him some nasty barium.  Not. A. Happy. Camper.  Poor guy was so upset.... I totally don't feel like typing all this again, so here's my copy/paste from FB:

Okay, we are back at OCH. The upper GI was a mess. We got into the X-ray room and they had this giant cup of barium for Wyatt to drink. I just kind of laughed inside to myself about the quantity. Wyatt of course got very upset and refused to drink anything. I tried open cup, straw, syringe... Offering a reward (following protocol). He was way to upset for any of that. I asked for a slip tip syringe that could fit directly into his button, since they didn't need it to be swallowed. They brought me a syringe but not the right one. They called over to OCH for them to bring one over and his sippy cup. They brought the wrong syringe and the wrong sippy cup (no blame for the wrong sippy cup). Had to call back over for the right syringe and thankfully I finally thought of his extension tube! Most syringes will fit the extension tube! Finally, an hour later, we got the barium in Wyatt and the upper GI completed. 

Good news, his stomach has NOT slipped back up through his diaphragm. 

Everything moved into his stomach and on to his intestine as it should. The doc did say that when I pushed the liquid into his stomach, it went straight up in his esophagus (reflux) and that his intestine doesn't curve around in a normal fashion. That's very common for CDH kiddos. There's always a risk with his intestines getting twisted up (bowel obstruction). But no surgery required!! Praise the Lord! And thank you for your prayers.

We missed lunch and OT but I got to feed Wyatt when we got back.

Remember me mentioning how much Jesus loves me, well, He still loves me that much but WHOA I got a nasty stomach ache.  I had to ask the tech in the feeding room to get me some water.  I wasn't sure I was going to make it the last 10 minutes.  The water helped some but we got back to the room and I got Wyatt down for nap as fast as I could and laid down myself. I feel asleep for a little while but unless Wyatt slept at the exact same time as I did, he didn't nap.  He was in his pack-n-play for 2 hours and didn't sleep.  I still felt crummy so I asked his tech if she could feed him dinner.  That should say something, I hate hearing how he does.  I want to see how he does with his eating.  Thankfully, she understood and I laid down for another half hour.  I also got to speak to our team lead about the frustrations of the day.  She explained the differences between the two GI test (which I'm sure I butchered earlier) and I got to express what would have made the experience be more "smooth".  Again, I felt heard and cared for.  She's the best.  For only getting 3 sit downs with food today, he still did a good job considering a week ago in five full sit downs, he ate the same amount.  :-)  

Thank y'all for praying.  I am so grateful he doesn't need another surgery right now.  Those are so emotionally difficult to go through.  Please continue to pray for less and less vomit.  We have a couple tricks left if it doesn't subside but hopefully he won't need those either.  

BEDTIME. 

Feeding Camp Day 22

Last night was rough.  If you recall, I mentioned Wyatt coughing and throwing up as I was typing... Oh man.  That continued.  I went down to tell the nurse and while I was there, he did it again and one more time after that.  Ahhh!  One more time and I would have been out of sheets for his pack-n-play!  

Wyatt getting his breathing treatment after vomiting from coughing.  He slept through everything.  

His lungs sounded great.  I gave him a breathing treatment and some Zyrtec.  It helped but he did continue to cough some.  So I made the executive mom decision to not give him the rest of his feed.  I disconnected his pump, turned it off and told the nurse that I choose sleep and quality of life (for last night and today).  No one seemed to mind.  

Wyatt getting to play outside after breakfast.  It was a nice day! 

As for today.  Wyatt did good eating by mouth.  He ate around the same as yesterday but no throwing up during his sessions!  PTL!!!!!!!  That means he got more calories than he has in a while during the day.  

He loves running around outside.  Especially when we run into each other and he get's "caught"! 

I'm coming to terms with the idea that Wyatt probably will come home still needing to use his tube some.  We most likely won't hit our goal.  We do still have 9 days.  The last day won't be a full day though.  God can do BIG things in small amounts of time.  It only took 6 days for creation to take place.  I only need one little boy to take in 950-1000 calories a day by mouth.  God is BIG! I am still praying for this miracle.  I still expect this miracle.  At the same time, I am preparing my heart to not be disappointed, to find peace in that moment while experiencing our son, eating however much he is eating right then and there.  

Riding a motorcycle!  He's taking me somewhere but hasn't told me where just yet.  :-) 

Today Wyatt tried mashed strawberries, not pureed.  He actually did good with them.  His ST opened the bowl and I think I buried my face in my hands and just waited for him to lose his stomach... good news!  He didn't.  WOW!  He did gag but recovered.  He gagged a couple of times throughout the day on different bites of food but recovered each time.  There's always this moment when he gags, I hold my breath, beg the Lord and Wyatt for him to swallow it down.  His face turns red and I wait.  Will he recover?  Will he lose it?  How much will he lose?  Is this a stomach emptier?  How much time is left?  Are we going to get any calories in at all?  And today, kept all his calories.  *Taking deep breath of joy and thanksgiving!*

Wyatt and Asher playing in London's room!  

Today James got to come down for a short visit.  Wyatt had daddy chase him all over the hospital.  Upstairs and downstairs.  :-)  He got his workout in for the day!  We also received a visit and dinner from the Adams' family!  Robyn and Asher came once before.  They know all to well the demands and tolls this place brings.  So, it's very sweet of them to come down and bring dinner, a yummy one at that.  ;-P

It's pretty difficult to get 2 toddlers' pictures without one of them being in motion!

Tomorrow morning Wyatt has his upper GI (swallow study) at the big hospital at 9:45am.  Wyatt can't eat or drink until it's over.  Poor kid. Hope they are on time.  He will miss breakfast and ST.  so sad.  That's such valuable time.  :-(  And I'd be lying if I said I wasn't nervous.  The results of this could mean surgery or no surgery.  I got smart today and asked his doctor more "what if" questions.  I don't think I realized or just didn't want to realize what could happen.  If part of Wyatt's stomach is caught up through his diaphragm, they will have to surgically pull it back down.  Ahhhhhhhh!!!  Another surgery.  The thought makes my stomach churn.  I'd take an under anesthesia scope any day over a surgery.  I'm hoping we don't actually need either.  

London joins in on the fun! 

Please pray with us.  We just need Wyatt's vomiting to decelerate. To be really honest, we have our days where I'm like WHOA, pump your breaks vomit but most of the time that's not the case.  When he pushed with textures we see some.  Here (the hospital setting) people don't want to see any vomit. And if they'd seen Wyatt a year ago, I cannot imagine what they'd be saying and test they'd be running.  He's SOOOO much better than what we had.  

I find it pretty special to know the moms of these two.  We all met long ago and who knew that one day we'd all be mothers to kiddos who struggle to eat and in the same month long inpatient program! God is purposeful! 

So anyway, I will keep you posted on test results and what's to be done.  Thank you again for praying!!! 

Sweet dreams kids!  :-)