Adjusting to Cast Life

We got released from the hospital yesterday after lunch and made home about 2 o'clock.  James and I ate lunch then Wyatt and I promptly passed smooth out in the living room, him in his nap nanny and me on the couch.  When Wyatt woke up, James sweetly took him into the playroom to help him begin adjusting to his GIGANTIC and HEAVY upper body cast.  

I'm not kidding or exaggerating y'all.  That thing is huge!  lol.  I was not at all expecting it to be that large.    They told me 5-7 lbs but I would put money that's it's heavier.  I haven't put Wyatt on the scale just yet but I will.  

blue = fiberglass cast
white = flannel strips
off white/gray = undershirt

Wyatt is adjusting smoothly.  We spent some time yesterday letting him play with just being in the cast and a diaper.  It allowed us to watch him "interact" with the cast.  We quickly could see where it was bothering him most.  Had to loosen the undershirt some around his shoulder and armpit.  I'm guessing that's from us pulling on it to cut part of it off to keep the moisture from soaking into the cast.  Also, the fiberglass in some spots was rough so we spent some time covering those spots with flannel adhesive strips the hospital gave us.  His cast is blue, I tried for gray (wouldn't show as much dirt) or maroon (gig 'em!) but no such luck.  If we need to, we can take the drimmel to some of those sharp edges.  So far the flannel seems to be doing the trick.  

Wyatt is very top heavy now.  Yesterday he struggled to stand up without hold on to something but as the evening and today has gone on, he has figured it out.  He still tires easily though.  He's wanting to climb and do all the things he was doing but he is just going to have to get stronger to get there.  For example, if he somehow ends up on his stomach, his arms aren't strong enough to get up.  He can push up some but it takes it all out of him and he can't do anything else.  Today he crawled up on the crate seats in his playroom and then couldn't move from there.  He also got up there another time and was trying to crawl to a chair we have in there (which he frequently did before) but he got his upper half on the chair and couldn't move.  I predict in about 2 weeks, he'll be doing most everything he was doing.  He's a fighter and he'll get stronger.  

Watching him go through this reminds me of when he first started sitting up, first started crawling and first started walking running, except it's all at the same time right now.  It's a weird feeling.  

how he slept all night

He was running this afternoon, from me of course and going to opposite direction I wanted him to go, and he fell.  Not uncommon for him to fall like that but watching him do it in the cast was weird.  It made the loudest thud sound when he hit the wood floor.  I think it scared him more than anything but gosh, it scared me too.  

much happier in the morning

Last night Wyatt fell asleep pretty quickly for him.  We put him in his crib on his back.  He stayed in that position, only moving his arms and legs, all night long.  He's a toss and turner of a sleeper so I was surprised we didn't see him try more.  The hard part was him losing his paci.  He'd whine and we'd have to go in there about every hour to two hours all night long.  At 5, I thought he was up for the day, so I grabbed him and selfishly put him in our bed knowing he wouldn't be able to go anywhere.  Normally, precast, he's be all over and in and out of the bed.  We all actually fell asleep for another 2 hours.  It was glorious.  lol.  

in the car seat & wearing maroon for college colors day

For nap today, we tried putting Wyatt in his big boy bed.  Since he can't jump out of it the second I lay him down, I thought I'd try to transition him now before he is able to move better.  Maybe it's my chance.  lol.  He stayed in bed obviously and again fell asleep fairly quickly for him.  Same at bed time.  

he looks like he's geared up with football pads

So, the cast is so large that NONE of Wyatt's shirts fit him anymore.  We have very generous amount of hand-me-downs, wonderful clothes giving g-parents and I've been known to buy a "must have" outfit here and there.... so this kid's closet was FULL.  I think he may have had as many shirts as me.  They all got boxed up and this morning I had to make a Target run.  I had to buy him size FIVE shirts.  It's crazy to look at him, knowing his real size and hold up the size 5 and know that that shirt is supposed to fit my little boy.  On the bright side, once the cast is off, he'll have a full wardrobe for the next couple of years.  

Life as Wyatt's parent is definitely different now.  While in the past, Wyatt has had pretty much free reign of the house.  I didn't always have to have eyes on him.  For right now, one of us is with him.  It's just not safe for him to be on his own.  If he falls, he needs help getting up.  And he is attempting to climb, like I said, and right now, that's just not safe.  I'm sure falling the wrong way could not only hurt but actually be really dangerous.  

But thankfully, it's already gotten easier as the day has gone on.  There's a lot of little things we have to be even more careful of now.  For example, Wyatt's g-button.  It's a leaky one.  It has always been a leaky one.  So, we have to check it ALL THE TIME to make sure his button pad doesn't need to be changed so that it doesn't get on his cast and make it stink to high heaven prematurely.  

in his big boy bed

Sitting in his high chair and car seat looks differently as well.  He looks mighty uncomfortable in both.  But I think he's okay.  He doesn't complain about either.  We also have be crazy careful about him not throwing up on his cast.  So, he wears this full size bib while he eats and for about half an hour after.  I don't know what we'll do if he throws up on himself.  We'd probably have to go in and get a new cast, early.  

Thank you so much to everyone that has prayed for us and offered us some sort of encouraging words and support.  We really do feel it all.  I know I said it last night but I'll say it again and continue to say it, THANK YOU!  

God is bigger than any trial we are or will encounter.  He is giving us strength and energy we didn't know we had and He's been doing it for years now... really always but our trials really began during Wyatt's pregnancy.  When praying for us and pleading on our behalf, please don't forget to help us praise His name on our behalf for all the miracles he's blessed us with as well.  :-)  

Feeding Camp Day 5

I have mixed feelings that the weekend is over.  The days (I know I've only had 2 of them...but I'm told it doesn't change) seem to draaaaaa.....aaaaaaaa....aaaaaaggggggggg....  But at the same time, James is here and our little family unit is complete (minus our furry friend, Ronix- but he's in good hands at my parents house).  

James was tired so he rested on my shoulder while we watched Wyatt eat.  The room we sit in has to stay dark so Wyatt can't see us behind the two way mirror.

Today was a much better day.  No one told me I had to or couldn't do something.  ;-)  JK... well, not kidding but that's not what made the day better.  My spirits were just up in general, so thank you to anyone and every one that prayed for me and us.  

Wyatt slept in until 7:40!  Loving blackout curtains! ;-)  He was in a good mood.  We went to breakfast at 9 took in almost 3oz.  Not his best work but for some reason he doesn't usually eat that much first thing.  From my understanding breakfast is a typical *star* meal for kiddos coming off not eating all night.  Leave it to Wyatt to go against the grain!  lol.  

When he woke up he a little bit of a runny nose so I decided that we'd keep clear of others today just to be cautious... both ways cautious.  If he does have something, I wouldn't want anyone else to get it and if he is fighting something off, I'd like to go ahead and keep all the other germies (kids) away from him to prevent more sickness. The cutie pa-toot-ie 2 doors down has an ear infection and on and off fever.  He's been quarantined to his room until he's been on meds 24 hours as well as fever free for 24 hours.  Scary!  Thankfully, Wyatt and I still had fun in the room.  

Isn't he cute!?!  

At lunch Wyatt did a good job eating as well.  2.5oz of milk, almost an ounce of blended spaghetti and a few bites of peaches.  That was a good meal for him.  He didn't have any "stand offs" (refusal to take his bite or drink... and they DO NOT move on to something else until he takes the bite/drink offered to him) and had fun.  

The doctor gave me some Zyrtec to give Wyatt for his runny nose.  She said it could be allergies or the beginning of a cold.  I asked her if it'd make him sleepy and she said it could or it couldn't.  You never know, with each kid it differs.  We lay Wyatt down for nap right after his lunch so I thought, might as well give it to him to help that runny nose.  Drainage can ruin eating for him. 

Wyatt fell asleep.  It took him a while, as usual but 3 o'clock approached very quickly and Wyatt looked to be sound asleep.  I asked our nurse to find out if there were any way to push his snack back to 4 and thankfully we were able to do so.  

Well, then 3:45 happens and he's still SOUND. A. SLEEP.... like out cold.  But I had to wake him up.  He was not a happy camper.  Oh my.  I could not put him down or he'd have a Wyatt sized melt down.  Thankfully, he hasn't figured out what a real melt down looks like.  We stay clear of those around here, wouldn't want him to learn and we've seen a few.  haha.  

James getting Wyatt to be in a good mood so he will eat!

We try to wait until the last minute to walk down to where we meet the feeding tech/speech therapist so that he doesn't get upset and clingy having to leave me to go into his room to eat.  This time we also decided to let James walk him in instead of me.  

Well, let me tell you, that didn't work this time.  He W.A.S.  N.O.T.  H.A.V.I.N.G.  I.T.   Oh my!  In his 25 minutes of allotted eating time, he only took in an ounce.  He cried, pushed away his sweet feeding tech's hands and nothing worked.  Not Super Why!, not Barney, not any toy cats, not any animals, nothing made sound or lights up... nothing.  So basically for 20 minutes of that 25, he cried and was upset.  Some of the cutest sad faces ever but nothing... that poor, sweet lady!  

The love I have for these two is out of this world and the love James has for his son is captivating.  

He continued "Mommy is the ONLY thing I want and keeps me not crying" mood.  lol.  He's so stinking lucky he is super cute or that just wouldn't fly.  ;-)  I really don't mind when he's whiny, hopefully he won't mind when I'm whiny when he gets older.  :-)

About 15 minutes before Wyatt's dinner time, James suggested we go ahead and leave the room and let Wyatt walk around before we just take him straight to the feeding room.  He's one smart man!  He and Wyatt went to the playground and ran around and slid down the slide and then when I was his feeding tech, I waved them on in.  I let the two of them walk ahead of me and James took him to his room.  It was MUCH better and being outside put him in a happier mood.  PTL!  :-)  

Coming in to eat.  

Wyatt had fun again in dinner and at 3.25 ounces.  Another PTL.  We REALLY liked our feeding tech today.  Our other techs are also great but she seemed to "get" Wyatt.  She interacted with him somewhat like I would.  She communicated well and used the way he played like teaching moments.  James and I both just liked her and will request her any time she is working.  Unfortunately, she doesn't seem to work much, I asked.  

Wyatt asleep!

We took Wyatt back outside after he did such a good job to reward him.  We'll go outside to play more than him doing good in his feeding sessions but we thought that he might connect getting to right after with doing well.  Hopefully.  :-)  We brought him after he threw up a little from trying to poop.  This happens frequently with tubie kiddos.  They struggle with on and off again constipation.  

He went to bed in his usual fashion.  

I'm looking forward to a full week of therapy.   Ready for 5 consistent days of routine.  :-)  Crazy, right?!?  

God is good.

I can't say that enough.  

As promised, our room!!

Our room has two doors, like the other room.  It's nice for a couple of reasons.  They keep more noise out, there is a playroom right outside our door as well as the hallway bathroom.  I can also put stuff together in there while Wyatt sleeps.  :-)  

We used command hooks to put blackout curtains up.  There are two on the right, where Wyatt sleeps.  I take the one on the left down when Wyatt is awake so we have natural light and he can look out at the cars.  

Wyatt's pack-n-play is behind the brown shower curtain.  I put that up so that he has "privacy".  I can sit in bed and write blogs while he attempts to look around to see me, then lays down and crashes! 

We have a shower and a toilet behind a curtain.  James was sweet and bought us a bathmat and an extra shower mat for us to stand on .  I also wear flip flops.  The white bin is my clothes and the dark ones are Wyatt's.  

Wyatt's bed.  

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!!! 

For Everything There is a Season; Turn, Turn, Turn

A Time for Everything

For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a tie to refrain from embracing;
a time to seek, and time to lose;
a time to keep, and a time cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.

The God-Given Task

What gain has the worker from his toil? I have seen the business that God has given to the children of man to be busy with.  He has made everything beautiful in its time.  Also, he has put eternity into man's heart, yet so that he cannot find out what God has done from the beginning to the end.  I perceived that there is nothing better for them than to be joyful and to do good as long as they live;  also that everyone should eat and drink and take pleasure in all his toil- this is God's gift to man.
I perceived that whatever God does endures forever; nothing can be added to it, nor anything taken from it.  God has done it, so that people fear before him.  That which is, already has been; that which is to be, already has been; and God seeks what has been driven away.

From Dust to Dust

Moreover, I saw under the sun that in the place of justice, even there was wickedness, and in the place of righteousness, even there was wickedness.  I said in my heart, God will judge the righteous and the wicked, for there is a time for every matter and for every work.  I said in my heard with regard to the children of man that God is testing them that they may see that they themselves are but beast.  For what happens to the children of man and what happens to the beasts is the same; as one dies, so dies the other.  They all have the same breath, and man has no advantage over the beasts, for all is vanity.  All go to one place.  All are from the dust, and to dust all return.  Who knows whether the spirit of man goes upward and the spirit of the beast goes down into the earth?  So I saw that there is nothing better than that a man should rejoice in his work, for that is his lot.  Who can bring him to see what will be after him?

-- Ecclesiastes 3:1-22

As we walk through life, we walk through seasons.  Not necessarily your traditional Summer, Fall, Winter and Spring but seasons of stuff.  I don't know.  Good, bad, fun, hard, easy, happy, sad, ect... Sometimes we mourn the seasons turning and sometimes we rejoice and are excited for the change and sometimes it's probably a little of both!

Our small little family is turning a to a new season of life!

...No friends, I am not pregnant.  God has not given us the green on that one just yet but we do have some big news... and no, we are not moving.  PTL!

James has accepted a new position with a small business strategy consulting firm called Thought Ensemble.  He's pretty excited about it... as much excitement as James will show anyway.  lol.  It's an opportunity for him to really grow and learn a lot from some really smart people.  And to be honest, I think he misses the consulting part, getting to change things up from time to time.  He'll work from home or travel, on an airplane not around town, to the client.  I'm sure it depends on the client and their needs.  Both working from home and traveling will be an adjustment but one we're welcoming.  This is an answer to prayer for our family.  So, we are quite grateful.

James has one more week at GameStop and then he'll jump right on into his new, exciting roll.  If you're interested, he'll be blogging for work.  It's not personal at all but if you're business minded, you might enjoy his thoughts on different work related matters HERE.  Wyatt and I should get to travel with James some here and there.  I'm sure each new city will peak my interest and we'll go along for the ride!  I hear one of the cities he might venture to is Boston... we've never been there before!

So, there exciting news numero uno...

What else is there?  What could be more exciting than that?  Oh you know, nothing much except that Wyatt was evaluated for Baylor's Our Children's House inpatient feeding program this morning.  No big deal, right?  Yeah, right!  It's a huge deal.  We've been praying about this evaluation for a little while now and we haven't been receiving any therapy services since Spring Break (That's early March for you people up north!)  Way too long.  I've been working with him but this is not my background and I'm sure I give in too easily.  We are so happy to continue this process.  He does qualify and should receive feeding, language and occupational therapy while being in house.  They've also requested he be evaluated for physical therapy and to get a swallow study done before our admit date.  We don't have that date just yet though.  They seemed to be very on board with fast tracking his enrollment though, which I totally appreciate and am thankful for.  We have until the end of June before our insurance changes over to a new company and a new deductible and out-of-pocket max!  That and he's ready.  No holding him back now!

Wyatt will be an eater of real food.

So much joy, sweat, blood, tears and vomit in that one sentence.  We've worked hard getting him to a point where we can give him this big push into being a more successful eater.

#futureeater

I don't remember if I shared much about the actual program when I blogged previously.  It's a 30 day program where Wyatt and myself (with the occasional break from James) will be with him day and night.  Wyatt is not allowed to leave the grounds and I can leave to run errands as long as someone is there.  He'll receive feeding therapy 4x/day and OT and maybe PT- not sure of the frequency just yet.  The rooms are hospital rooms with hospital beds.  Some rooms have their own bathrooms, some share with the neighbor (think Jack and Jill) or the dreaded hallway bathroom... I'm hoping for one with one in the room.  We visited our friend Asher and his mom, Robyn last week so I've seen the rooms and walked around the place and it's all totally doable for 30 days!  We'll bring Wyatt's pack-n-play for him to sleep in and we'll bring some other items from home to make it more comfy.  We will also be able to have visitors and from what I hear, they really help the time to go by.  :-)

first Easter egg hunt

Please pray for God's timing, our patience (mine really,James is pretty patient) and just peace with all the change happening at once.  And for Wyatt and his team of therapist and doctors once we are admitted.  Just for knowledge in knowing how to help Wyatt be a successful, lifelong eater.  

On another note, we are coming out of flu/RSV isolation!  Yippie!  We, of course, will still keep our guard up.  I'm not sure if that will ever come down.  Maybe... someday.... We love the warm, spring sunshine.  I even love the unpredictable thunderstorms and the call of the water...swimming!  I can only hope Wyatt shares this love, which I think he will as much as he loves his bath time!

So, as you can see, our season is changing and we are excited and ready for it all.  :-)

...now if we could just get this kid to love nap/bedtime... you'll miss it buddy, I promise!

Yesterday we made our second trip to the Emergency Room since coming home from the NICU.  Praise the Lord, it was an easy fix but it was still a very necessary visit!  Here are my FB updates...


Please pray for Wyatt. James Davis and I are at the ER with him. He is bleeding a decent amount from the site around his g-button. James and I could use some prayers for calmness and patience. Thank you. — at Children's Medical Center of Legacy.

I unbuttoned Wyatt's top to find this, this afternoon. His button had been leaking a significant amount with some small amounts of blood. I called GI yesterday and left a message but hasn't heard back so I called surgery this morning and spoke to someone there and they told me to call GI again. But after finding this, I decided I wasn't going to wait anymore. That was a CRAZY amount of difference in a matter of a couple of hours. James Davis met me here.

         

The gauze next to the super bloody one is the one from last night. I kept to show the doctor because I had a feeling we'd be called in but no I what was to come... The top one was from the time we left the house to seeing the doctor- about an hour or less.

Wyatt sleeping while he "eats" and waits to see if  he tolerates his feed. 

We got probably the best/easiest news possible. Praise the Lord! I can't express enough how thankful we are for your prayers. Wyatt has granulation tissue around his button site. This has been our normal. It's been there since day 1 of us seeing his button. We've had it silver nitrated off a few times now and it's never fully gone or way and has grown back. Yesterday I saw what looked like a black suture coming out of it... Not normal and with the leakage and blood, I knew something was up and I was right. This suture may... "may" be the cause of the granulation tissue all along. The NP also thought that the leaking might be that Wyatt needed a larger button placed. So he got a larger (girth) button. They didn't have the larger girth button with the correct length so they just used the next size up. They said it felt good as they popped it in. She also went ahead and silver nitrated his tissue again. We already have a follow up appointment scheduled for the end of May and his surgeon was comfortable keeping that date after talking to the nurse. I didn't start Wyatt's feed this afternoon because I figured it was better for the doctors to look at him empty so he got a little hungry but was a champ! God is so good. Wyatt is getting his feed now and they want to make sure he tolerates it with the new button and hope that there is no more leaking.... So we're just waiting and Wyatt is sleeping. :). Thank you again for praying! God is good and faithful! We should be leaving soon!

Wyatt was wide awake and ready to play once we got home!  Ronix was happy to see us too!  :-) 

We are home now, Wyatt is wide awake because of his long, late nap but he is happy and playful! PTL! Thank you again for your prayers. We have follow up in 2 days with our pedi and 3 weeks with his surgery doctor (not having surgery).  

SO, here we are home now and Wyatt never even knew anything was wrong.  He isn't really bleeding anymore.  He's some small residue but we had that before.  His button is still leaking though.  I'm hoping his pediatrician has some answers but my gut tells me, she is going to tell me to call surgery again.  

Here are a couple of videos.  The first one is a couple weeks old but the second one is from last night after we got home.