Feeding Camp Days 3 & 4

DAY THREE

ready for bed in a new room

Today was moving day!  The family moving out of the room we were moving into came later than anticipated so Wyatt got a shower in the old room and got into his pajamas.  Yes, we let him wear his socks with sandals.... Want to keep his feet and bed clean!  

We finally moved into our room close to 8 which means Wyatt didn't fall asleep until a little after 9.  James and I tried to get as organized as we could while letting little guy sleep.  

Yesterday as a whole was a good day.  He had his first real OT session and he wasn't feeling it.  Not sure if there's just too much going on in the room or if he's trying to adjust.  We'll see on Monday if that continues.  

Wyatt was also weighed yesterday.  He's lost a little weight but nothing concerning and nothing we didn't expect.  We are going to give him a little bit more through the tube at night to counter not getting as much during the day.  This is a bit of a step backwards but looking at the end goal, it is what we need to do.  

He slept pretty much through the night.  I stayed up late to give him his bolus feeds so I was tired this morning.  Of course.  

DAY FOUR

I'm going to be really honest, today has been a hard day.  Wyatt didn't wake up until 7:30, which was nice and the day started good.  

He didn't eat a ton at breakfast and he threw up some.  I think it was blended waffles.  {Yum, right?!?}  His first bite of them, he grimaced some.  I don't think it's the flavor he made a face at but the texture.  I've given him tiny bites of waffle and pancakes at home both with maple syrup.  He LOVES syrup.  If I'd let him eat that off the spoon, he probably would.  

Wyatt playing the piano in the chapel.

We went on to play outside for a little while with some of the other kiddos.  Wyatt took a little tumble and he needed his button pad changed.  So we came in to clean up and change his button pad.

On my way in, a nurse asked if she could speak to me about something, in a very serious, "I have to have this conversation with you but don't want to" tone.  I honestly had no idea what she had to say but did not expect what she said at all.  

And before I share, I will say that for some reason, I took it very hard.  I was very upset and it took me most of the day to calm down.  Reflecting back, I didn't really need to be as upset as I was but for some reason, I don't know.  Maybe the surprise?  Being told what to do?  It being ridiculous?  I don't know?  So anyway...

He hasn't figured out that he can BANG on it and make lots of noise so it's nice to hear him just punch away gently, making music.  :-) 

We brought Wyatt's closed circuit video monitor with us so that if we needed to leave the room while he's sleeping or just leave the room while he is trying to go to sleep, we could and still have eyes on him.  James and I always have eyes on him.  But apparently somebody complained to the charge nurse that they felt like "they were being watched" and were "uncomfortable".  James' first response when I told him was that if they are doing their job, why would they feel uncomfortable?  I pointed out that it was not an IP camera.  I can't record anything.  I can't save anything.  I can't go back and watch anything.  If I don't have the monitor in my hands and turned on, I can't see anything.  I only use it when Wyatt is IN BED.  And to be honest, no one should be doing anything in my room without us in here.  They do pop in to leave food, towels and such but no one is touching or watching Wyatt without me right there and I promise you, I don't need a monitor to see you- my eyes work just fine.  Anyway, she said she'd speak to management on Monday and in the meantime we needed to unplug it.  So, I unplugged it.  Doesn't matter when he's not in bed anyway.  

I just think it's crazy that you can have a sound monitor and not a video monitor.  It's the same thing when it's not an IP camera.  It's for the safety of our son.  The day nurse thought it was ridiculous and told me I could use it and that she'd be here for the next 4 days.  Anyway, I'll let you know how it goes.  

James got here with lunch and Wyatt had a rough lunch as well.  I had to go home for a few hours to make Wyatt's blend for his tube bolus feeds.  We were getting low.  I hated leaving but it was good because I was really upset.  The less busy day and the dumb camera incident just had me in my head to much, not in a good way.  

Wyatt threw up a lot while he was napping and didn't really go back to sleep.  I don't know what was going on with his sensitive gag today.  He refluxed on an empty stomach before lunch too.  He had just had a drink of water, not sure if went down the wrong pipe or what.  Hate when he gets the red faced thing going.  I always feel so sad and helpless.  

Our feeding tech had some time today and offered to let us bring Wyatt at 4 instead of 3 in hopes that he'd get some more rest.  I was gone during this session and James said he did really good.  

Of course, I some how gave him a big hug just at the wrong time before dinner and he got really clingy and upset before going into his feeding room.  And he didn't eat much and cried.  

Prayers I have a calm heart tomorrow and Wyatt has a better eating and drinking day, with no vomit!  :-)  

Of course I forgot to take pictures of our new room.  I'll post some tomorrow.  We got all unpacked and it feels a little more comfy and home......ish.  :-)     

Wyatt reading one of his favorite books.  

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.  :-)  

Feeding Camp Day 1

Day 1 is almost complete.  

We got here and were directed to the upstairs nurses station.  We are temporarily in the resportory wing because that's where a room was available on our time and with a private bathroom!  I'll take it!! :). We needed to get in before our insurance year ends (end of June) as well as James job change, resulting in a whole new insurance company.  I did not want to deal with that mess.  Just wanted to get in not have to mess with payments and percentages or deductibles.  Our out of pocket max was met earlier in the year.  

Anyway, back to our day!  People were in and out all day long asking loads of questions and giving even more information.  I requested they remove the hospital crib so that we could use our pack-n-play.  I thought that might give Wyatt a little more of home.  I also BEGGED for an adult hospital bed for myself instead of the reclining chair.  Oh my goodness, all you poor husbands who have had to sleep in these while you're wives were in labor!  I'm so sorry!  I know James slept in one for like 4 days.  Love you honey!!  It's against policy for them to do either of these switching of beds but I guess if you talk to the right person, you can get things done.  On Friday, we will have to change rooms.  We'll be moved to the first floor, another room with a private bathroom.  Praising The Lord for the sweet little things that will make this trek a little bit easier!  

This was the room upon arrival.  It's got a nice view of the front entryway and a big tree.  I forgot to take a picture before Wyatt went to bed so I'll add the to tomorrow's post.  

This is the entry to our room.  It can be shut off from the bedroom so if I need to do something while he's sleeping I can.  Our new room will have a space like this as well.  

For feeding therapy today, I fed Wyatt infront of a feeding tech while she took notes for Wyatt's afternoon snack and his dinner.  His purée wasn't fortified with oil or oatmeal so it wasn't as caloric or thick as he's used to.  

Tomorrow morning the actual speech therapist will begin working with him and I'll be behind a two way mirror.  I have a feeling it's going to be very hard to not want to interven or enterject.  But I know it's for the better and they have perfected the process.  

Wyatt napped for over and hour today, which is on par for what he's been doing recently.  His 20 minute naps have grown significantly for us!  Isn't that funny, don't they usually start to lose more and more nap as they get older!!  I'll take it!  He also fell asleep without fuss.  He laid there for probably half an hour while I'm sitting outside his room in the "library" watching him on his monitor.  (Yes, I brought the monitor!  I like my comforts and my peace of mind!). 

Thanks for all your prayers and support.  We've got some  scheduling issues that need to be worked out but other than that, overall it's been a good day.  :). 

Wyatt out on the playground. 

My first hospital provided meal.  There were a few options.  I chose a nice healthy chicken breast with green beans and a salad.  My sugar cookies were full of sugar of course.  I figured I earned them.  :). I do have a fitness goal to not lose all the hard work I've been doing in boot camp and with my trainer over the past 2 months!!  

Oh yeah!  Almost forgot to mention, I met a new friend in person today!  Her daughter is attending the out patient therapy and will attend the inpatient therapy this summer.  We were connected by a mutual friend who knows both our stories and it was just cool to meet in person.  Small world, Big God!  

Good Jeans

Did I says jeans?  I mean GENES!  As in genetics!

We got our genetic testing results a few weeks ago and all test came back normal.  No chromosomal abnormalities.  No syndromes.  Just you're good 'ol random birth defect of CDH.  The geneticist said there really aren't any other test that can be done that would give us any answers.  She did say she'd like to do some more research on the computer.  I have a feeling she needs to find some medical "reason" and I don't need one.  I'm pretty sure we'll never hear from or see her again.

Now on to more good news.... IT'S HERE!  TOMORROW!  THE BIG DAY!!!

At 10 tomorrow morning Wyatt will be admitted to Our Children's House Baylor (OCHB) inpatient intensive feeding program.  James has taken the day off and we'll go down with a load of stuff to make our room comfortable and help pass our time while there.  James will then return home and I will stay with Wyatt.  He'll come visit and relieve me some.  How often will depend on his work schedule.  He will have to travel some while we're there.

Wyatt will be inpatient for 30 days.  That's a long time y'all.  Totally worth it but it's still a long time.  He might get a few hours on Father's Day to leave and celebrate dad outside of the hospital.  I'm hoping anyway!

My hope is to do some small updates each day... we'll see how that goes.  haha.

He's doing really great.  He's totally IN LOVE with cars and he tells me many times an hour how they "Go BEEP! BEEP!"  I love it!  :-)  He's learning more and more letters and animals.  He's able to point to some of them on the wall of his playroom.  Makes my teacher heart swoon each and every time!

Some Mommy goodies from my home group girls! 

Bring on feeding camp!!!