James and I began this blog at the very beginning of our pregnancy with Wyatt 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. And now to share even more with the new miracle on the way.

Friday, August 29, 2014

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.  :-)  

Wednesday, August 27, 2014

Mehta Cast for Scoliosis

Wyatt {and mommy} love Smoothie King!

Well, I've been trying to write this blog for a couple of weeks now and haven't been able to do so.  I don't want it to be true so I've procrastinated until I can procrastinate no more...

Jumping in the bath before I can strip him down.  

Tomorrow (Thursday) morning, Wyatt gets his scoliosis cast bright and early.  We are due to be at Scottish Rite at 5am and his procedure begins at 7:15.  

Please Pray.

I've not struggled with something this much with anything God has placed in our paths in a very, very long time.  Like years and years.  And I'm going to be totally honest, I am STRUGGLING.

Wyatt likes to drive mommy to the swimming pool!   

I absolutely KNOW in the depths of my bones that God is good and he's got this amazing plan for our family, Wyatt especially and He WILL absolutely be glorified through every second of this, including my struggles.  But my goodness, when does this kid get to catch a break!?!  When do we all get to sit back and breathe?  God is good and he keeps his promises and answers our prayers.  We will all get through this and He will be glorified, no matter my reaction.

Wyatt playing at Speech Therapy.

I think one of the reasons this has been so difficult to accept is because we've never taken something he knows and loves away from him.  He didn't eat before he got the g-button.  He had no clue anything was wrong with his heart.  He didn't know what going to do things with other kids was like or having play dates was.  He did lose them because he didn't know them.  But he knows the sound of the bath water going and he stops whatever he is doing to go to play in the water.  If I'm not quick enough, he's in there clothes and all before I can strip him down.  He loves the pool and is totally brave in exploring the waters.  {Mom's had a few heart attacks because of this fact}  I hate to take them away.  I know he'll adjust and so will I but I'm just having a hard time swallowing it down.  I'm pretty sad about it all.  But I'm praying and talking about it and hopefully soon, I'll see the good.

Daddy and Wyatt having giggles at lunch. 

Here are some of the details so that you can pray over them.  God is in every single one of them.

The smile Wyatt gives when you talk about Princess Pea from Super Why! 

Wyatt has a 32* curve in his spine.  The doctors believe it is a result of his Diaphragmatic Hernia (CDH).  And as I was told today, because it's a result of the CDH, it can be more difficult to correct. Arg...

Our second home the last couple of weeks, the pool! 

He will go under anesthesia and be put on a ventilator for the duration of being sedated.  As they pull him out of sedation, they will attempt to turn down the oxygen and take the tube out.  If I know my son, the second he comes to, he's not going to wait and pull that tube out on his own.  I'll let you know.

He will have a partial body cast that will basically look like a tank top.  It will have a hole for his belly and g-button.  He is hard and tight and CANNOT be taken off until it is cut off.  It cannot get wet.  It will get dirty.  It will start to stink.  And it will be gross.

He cannot take a bath, got to playgrounds with wood-chips, sand or dirt.  Obviously no swimming.  We will have to give him sponge baths and wash his hair in the sink.  He will have to wear a giant bib while eating so that we can prevent food and vomit from getting on the cast or going down inside of it.  GROSS!

He will get a new cast every 2.5-3 months.  We already have a date scheduled for November for #2.  Thankfully, the way scheduling is going, it is in our favor.  He'll have to have a cardio appointment in that time which means we'll have a day and a half with NO CAST.  But normally it's removed, he's bathed and he gets another one.  He will be sedated and put on a ventilator each and every time he gets a new cast.

Look Mommy, No hands and it's deep waters! 

Once Wyatt is awake after the procedure, he'll come back to his room and he might or might not have to stay the night.  I have no idea.  They'll tells us tomorrow so Wyatt and I have a bag packed just in case.

Wyatt and I spent 5 hours up at TSRCH today meeting with everyone except the kitchen sink for "pre-op" (it's not really an operation, PTL, but that's what they call it so we're going with it).  A good friend of mine joined us for a little but since James had to work.  That was such a blessing, she is a true light in my life.  Thank you friend.
Chatting one second and out the next, what 5 hours running around a hospital will do to you! 

Then we come home.  We do life like we always do and adjust accordingly.  That's how we roll.  We really don't have much choice in the matter.  I am praying Wyatt adjust quickly.  I adjust as quickly as he does and James I think has already adjusted.  lol.

Wyatt post "professional" haircut.  

This should go on for about 18 months.  Wash.  Rinse. Repeat.  Once Wyatt's curve reaches 10* or less for three cast in a row, we are finished and will be followed to ensure (and hopefully) that it doesn't go back to something worse.  The doctor also mentioned that if after a few cast we see no progress then we will stop.  At that point, I don't know what happens.  Maybe he gets a brace that just helps maintain the current curve or surgery.

I feel like I'm usually so "strong" in situations like this.  I know we've had our fair share the past few years.  And God has given me a lot of strength.

A nearby splash pad.  

But I must confess some of it has absolutely not been strength.

It's been me "sucking it up" and swallowing it down and bottling it up.  Totally not dealing with the emotions that come with some of these things.

Playing in the waiting room at TSRCH.  

We are continual works of progress and I am no exception.  God is working in me, even when I think He's forgotten about me, He is hard at work.  He is revealing a lot right now.  He's exposing my weaknesses and I am thankful.  I don't want to sit in my sin.  I want to grown and learn.  So thank you Lord for never forgetting about me.  Thank you for making me yours.  I am yours.  Always.

Thank you so much for praying for our family.

The last twos Wyatt and I have basically lived in our neighborhood pool.  And we took him to get his first "professional" haircut, which we will probably continue with the cast since I make the biggest mess cutting his hair.  I am NOT a profession and they have this cool vacuum that's connected and it just sucks the hair away.

Cranky Wyatt makes for a funny Wyatt!