BYE- BYE G-BUTTON

So, um , yeah.... we took Wyatt's G-button out last Wednesday.... then we put it back in on Thursday...   Let me tell you about all that... 

So last Wednesday we took Wyatt's G-button out at his GI appointment.  I wasn't expecting it.  I didn't think she'd be happy with his little weight gain but she trust us to know when we're ready and a couple months ago I said we were ready.  They usually want you to go 6 months without using the button and get through the flu season.  My argument there was that if he's sleeping and needs meds and I can take the easy route of pushing some meds through his button, I'm totally going to and know that if the button isn't there, then we'll wake him and do it.  Also, there is ALWAYS a flu season around the corner, it's going to come every single year and he's not a baby anymore.  So, anyway, she loves Wyatt, has known him (and us) since he was in the NICU and trust that when I say it's time, it's time.  So, we took it out.  

He has a lot of granulation tissue (extra skin from the movement of the button is the best way to describe it) or it could actually be some of his stomach sticking out- they aren't really sure.  I guess it kind of looks the same.  ;-)  I had a feeling we'd have issues with that but who listens to mom, the non medical professional.  lol.  When we got home Wednesday, I fed Wyatt lunch and then lifted his shirt to look at the bandage covering the site.  It was leaking horribly.  I changed the dressing and it continued to leak.  Repeat that about 6 times,me changing the way the dressing looked each time.  I finally made a GIANT dressing with 2 maxi pads that held and wasn't leaking.  PTL!!!!  That was messy and stressful.  

While doing all that over and over again, I called into the general surgery office.  We already had an appointment scheduled at the 1 week mark to have the site looked at per GI request but I wanted to be seen ASAP.  I knew from friends' stories of taking their buttons out, this wasn't an issue like was for us.  

We went in Thursday afternoon and the doc questioned me a little bit but then when he saw Wyatt's site, he agreed that it did in fact need to be surgically closed.  When we put a G-button back in , he noted that it had not even begun to close and wouldn't have.  Due to how long he had a g-button (about a week or 2 shy of 3 full years - waiting for my time hop to give me the actual date ;-) ) and the tissue, it's a good looking hole that would remain a hole until it's surgically closed.  I asked if he could do it right then, he laughed a little until he realized I was serious.  lol.  Then I asked about Friday and he politely said he'd go check with his surgery scheduler to see when either him or our actual surgeon, Dr. Schindel (He did the placement and Wyatt's CDH repair) could do it.  

With all that said, Wyatt is scheduled with Dr. Schindel at Children's Health Legacy at 8:00am tomorrow (Wednesday) to have his g-button hold closed.  He will have to undergo anesthesia.  Nothing new for him and PTL he always handles it great but there are always risk.  He also had a fairly good fever this weekend and technically that can delay surgery but he woke up yesterday and this morning fever free.  If he doesn't get one again, I will let it go.  If it goes up at all, I will call and we'll probably reschedule.  He had no other symptoms and acts fine. 

So there you have it, no more G-button as of tomorrow.  He's still eating only blended foods and low volume.  We just boost EVERYTHING!  I actually spoke with his speech therapist today about how we've kind of come so a stand still a bit and she's been trying to figure some things out with him too.  I mentioned the Day Patient feeding program... basically like the inpatient one we did over a year ago except it's a few hours a day and you go home instead of spending the night.  She agreed we might be to that point.  It'd be a long 5 weeks but he may need that intensive push to get him to taking actual bites of solid foods.  I told her that if she thinks that we are close, I'd like to get the process started so that we can get it all finished before the end of the year.  We've hit our out of pocket max for insurance and I'd sure hate to pay for that.  lol.  :-)  We'll see how it all goes. 

Last week was just emotional and exhausting.  I started some solids with Gabe and he did great and it brought my heart a great deal of joy and I'm so grateful God is redeeming those things that I missed with Wyatt.  But we are still going through some of that with him too and so my heart ached watching Wyatt gag on some of his blended lunch and throwing up.  I pray for the day they can sit down to eat and Wyatt can eat what Gabe is and they are laughing and goofing off at meal time.  ;-)

I had a hard time finding JOY in all of this.  This should have been (at least in my mind) this big, bright, joyous moment.  It wasn't.  I was overwhelmed, worried about the granulation tissue and leaking.  I am so grateful we are finally here but I worry too.  I just have to pray and remember, God is total control as He always is.  He hasn't let go or forgotten about us one single time.  Wyatt is important to Him and He very purposeful in every single little detail.  I'm grateful for that.  It's hard to accept at times but it's still good.  

My aunt sent me a couple of verses recently that have resonated closely in my heart relating to all of this... 

Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin, 2 so as to live for the rest of the time in the flesh no longer for human passions but for the will of God. - 1 Peter 4:1-2 

I will sing of the steadfast love of the Lord, forever;
    with my mouth I will make known your faithfulness to all generations. - Psalms 89:1

Long Overdue...

Umm, so it's been 4 months.  lol.  Whoops.

Gosh, you have a baby and just let everything go.. ;-)

So, there is A LOT of updating to do and I'd like to say I'll get to that but I probably won't.  haha.

I've just got a lot on my heart and a blog seems appropriate.  Prayer too of course but sometimes one, me, just needs to air it all out.

Wyatt's mehta cast came off last week.  It's been off for 7 whole days now.  It's be glorious.  Not every part but the cast being off is just the biggest blessing.  I don't even know if I can fully describe what it's like.

I kind of touched on this on an instagram post but it's not all butterflies and rainbows though.  I had this dreamy idea of coming home, loving on my sweet boy and giving him a nice bath.  We'd tell him, "Wyatt, it's bath time.  Let's go take a bath!"  And he'd light up and run to the bathroom, like he did before he got a cast and even with his cast, bath time just looked different.  He'd jump in the tub, giggling and splashing around, playing with his toys while I soaked his skin and soothed his itching.  He'd get out and I'd wrap his towel around him and hug him tight and get him ready for bed.

Let me tell you, that was a dang dream.  We had the OPPOSITE of that.  He freaked the flip out.  I'd like to use some curse words there because honestly, it was that bad.  He has never freaked out so much in his entire life, combined.  I was practically half way in the tub with him, fully clothed.  He was screaming bloody murder.  He did not want to be in that water.  So hard for this water loving momma and he loved it too.

The next night, I tried showering with him instead.  Again, he freaked out.  I had a little more control since I was in there with him but whoa buddy.  He fought it tooth and nail.

Nights three and four, James showered with him.  Still horrible.  Our poor boy.

Night five I filled our master bath with maybe 2 inches of water, got his bathmats from his bathtub and all his toys along with his bath markers.  He still didn't like it.  :-(  {I had him in our bathroom bc our A/C was out in the main part of our house.  We have a separate unit for our master bedroom, PTL!  Way too hot outside in Texas, in July, to not have a working A/C.}

Night six, our A/C is fixed and I do the same in his bathtub.  This is how we bathed him with his cast.  Just a couple of inches of water and he'd stand while we soaped up his legs and rinsed them.  We'd then transfer him to the bathroom counter, lay him down and was his hair in the sink.  His arms and stomach would be wiped down with a wash cloth.   So, my goal here was to make it as close as possible to what we were doing in cast.  Thinking just maybe he'd calm down some.

He'd do okay while I'd wash his legs but the second I went any further north, he'd freak out more and more the closer I got to his head.  If I poured water on his back, he's scream.  So, I got a wash cloth to  wash his back.  That seemed to help a little.  James and I both noticed that he really freaks out if any water, and I mean any, gets on his face.  This is not the case outside of bath time, just FYI.

I'm hoping going slow helps him to not be so scared.  I don't like seeing my little one in fear of something he used to love so much.  I've been running all the scenarios in my head... control, sensory, simple fear, and I don't have a freaking clue?!?  lol.  I just want to help him not be scared.

He had his 3rd birthday a couple weeks ago and I swear he has come leaps and bounds in these couple of weeks.  His talking, his adventurousness (I think I've had about 100 heart attacks with his monkey climbing business), volume of eating... I mean, just so much.  All these things we've been praying for, we are seeing.  It's been so amazing.  God is seriously in the business of miracles.  I have to remember that when I get discouraged about bath or reflux vomit at breakfast.  He the freaking out at bath and losing dinner because he is crying so hard....

And that not so smooth transition into my next heavy heart topic.  lol.  Sometimes I can be an all or nothing person.  Like, I get an idea and I'm all go.  Like it needs to happen and now or even better, yesterday.



A couple weeks ago, it dawned on me that we haven't really been using Wyatt's g-button.  I mean we use it but we don't have to.  Does that make sense?  I got him to start taking his medicine by mouth a little over a month ago.  We most of the time have to offer him something for taking his drinks, just like we do for meals, but sometimes not.  Most of the time we do... But the point is, we don't have to use his button for meds anymore.  That's B-I-G, big!  :-)

Then the other times we use his g-button is for replenishing the calories he threw up.  But that is our laziness or business or us not wanting to wake him up bc his meds have to be given a certain amount of time before he eats and we have to leave by a certain time... All good reasons, right?  lol.  jk.

Wyatt really is throwing up a lot less.  A lot less.  It's been awesome.  In fact, he's had a snotty nose for almost a week now and his throwing up has not increased bc of it... bath time sure, but not because of the snot, not like it did in the past.

So, as I got this realization that he doesn't really need the button to be used anymore, I wanted to take it out.  No waiting because if it's there, we're going to use it.  It's convenient, it's quick, it's safe... why not?!?  It's such a crutch for it to be there.  It's not easy to pretend it's not.  I started e-mailing GI and general surgery to see if his granulation tissue would effect how the hole closes and just dreaming about it coming out.

We saw GI today and I was so excited.  I was going to walk in there and "ask" her to take it out.  {Mind you, I can take it out any time I want.  It's SUPER simple but I do like to be a good patient and get the doc's okay first.}  I was going to be super firm about it... no compromising.  lol.  I'm a sucker for trusting our doctors though.  God put them in our life for a reason and they do know what they are doing.  {I do use discernment, I have changed a doc here and there if I didn't feel like Wyatt was getting the care I thought he needed.}

Our GI doc is great.  We met her in the NICU and I do trust her.  The protocol for g-button removal is 6 months with zero use and if that date happens to fall near or in flu season, they like you to wait until post flu season.... that puts one in March-ish.  No way this mom is waiting that long when I know deep in my heart that he does not NEED that button anymore.  I know with his cast off, he is going to gain the weight he should be.  He will eat enough food to grow.  He gained an entire pound in  one week and I haven't done anything differently. He's just not carrying around 5+ pounds of cast anymore.

Anyway, we compromised because she just couldn't take it out.  I agree.  We should give it more than a week to show that he will continue to gain.  Our compromise is 2 months at our next appointment.  If I do not use his g-button and he continues to gain weight, she will give the green light and we will remove the button at that appointment.  It's on folks.  I will work so hard to get him to where he needs to be.  His meals may be blended but he is eating.

Milestone checklist... 

• talking more
• capable of eating almost 7 ounces in one meal, without vomiting
• scoliosis mehta cast off
• scoliosis brace on
• talking

Milestones coming soon...

• potty training
• g-button removal
• conquering table foods (no more blended meals)
• real talking

So if you would, please pray with us for all of these things:  Wyatt's eating, weight gain and our having the discipline to not use his g-button out of ease.  For sanity in potty training in the next couple of weeks.  For his brace to do good and for Wyatt to not have to go back into a cast or need spinal surgery.  And for patience and discernment in Wyatt's sudden fear of water. 

Thanks everyone.  Maybe I'll be better about blogging.  lol.  ;-) 

______________________________________

And let's not forget about this cutie... He's important too... 

Meet 

Gabe Weston Davis!

All professional photos by Andi Stubblefield Photography.

One Month Old

Two Months Old

Three Months Old

Wyatt 3 Years Old

4th of July

Morning of Wyatt's 3rd Birthday

The day of Wyatt's cast removal!

Before and after of his cast coming off. 

Wyatt's brace, to be worn 18-20 hours/day

Getting to play outside at the playground for the first time post cast coming off.  He LOVED it! 

36 Weeks and 4 Days.... the first time...

I wrote this yesterday and posted it on Facebook and thought I'd share it here too...

So this day (36 weeks and 4 days) is the day I delivered Wyatt. At 36w3d, I was having terrible, and I mean TERRIBLE, chest pain that we thought was heart burn that had been going on for a few weeks on and off but getting worse and more frequent. That morning I was dead set on getting my hospital bag packed. I sat on the couch, made a list and couldn't move I was in so much pain. James came home from work at lunch to get me to go to our regularly scheduled OB appointment, got there and my BP and protein were so high she sent us straight to labor& delivery. ..no hospital bag in hand, just a list sitting in our living room. Got to L&D, they cut my cerclage, hooked me up to the monitors, put pads on the bed rails just in case I had a seizure, my BP was THAT high, gave me an IV of magnisium and my epidural. That was around 6pm, I slept through the night (minus them replacing my epidural bc I could feel one leg-after the 2nd one, I could then feel the other leg so I just left it alone), slept through my contractions but woke james up and he called the nurse in and I was at a 10, GO TIME! A couple of easy pushes and my precious 4.5lb Wyatt came at 6:20 in the morning. The doc cut his cord, handed him to the NICU team and thus began our 109 day stay at the hospital. It took 6 days for my BP and blood platelets to return to normal enough for me to be discharged but that was a blessing in disguise. It was hard enough leaving without wyatt, I can't imagine what that would have been like at day 2 of life.
Mr. Gabe is already 6 lbs and we are just praying for peace in God's timing of his arrival. Id take tomorrow bc there really isn't much room left for him to grow but God is good and He knows!

36 Weeks

36 Weeks

Both of these pictures are from this weekend.  It could be where I am standing in the room compared to the mirror but holy smokes it looks like I grew overnight!  

How far along? 36.5Weeks

Total weight gain: According to my OBGYN, I’ve only gained 21lbs as of Friday.  My goal has been to stay under 30lbs gained.  We’ll see how the end goes.  Gabe is just a bigger boy than Wyatt was.  J

Maternity clothes?  Absolutely.  And as much as possible, I am wearing yoga pants.  J 

Stretch marks?  Nope.  Praise be to God! 

Sleep:  Dear Pregnancy Insomnia, You are not welcome.  I dislike you, A LOT.  Regards, Casey

Yeah, so that started happening.  Along with some restless leg syndrome.  And with that comes muscle cramping.  That didn’t happen with Wyatt either. 

Best moment this week:  Seeing Gabe NOT breech!  We are praising the Lord for allowing him to flip into position.  Now praying he stays that way.  J

I had a friend point out that we don’t know if I will ever get to feel a baby move inside me again so it hit home.  I might not.  And actually, I most likely will not.  We will just have to see what God has in store for us. Love that I don’t have to worry about it, He just knows.  J  I am also trying to take in as much time with Wyatt as possible.  He’s only got a few weeks of being my one and only left.    

Miss Anything?   Comfort.  LOL.  I would like to go a day without back pain.  That would be great!    

Movement:  I’ve mentioned before that Gabe is ACTIVE.  Wyatt was too but it’s SO different.  Wyatt was more of a light movement frequently.  Gabe’s moves are powerful! I totally LOVE feeing him move.  It’s awesome but it can be so much and so powerful that sometimes I feel a little sick.  I think it’s a good problem to have.          

Food cravings:  I’m loving food the first half of the day.  Any food really.  I have also been wanting to chew on ice.  That’s not normally me. 

Anything making you queasy or sick:  Not really. 

Gender:  It’s still a boy!

Symptoms:  Just Braxton hicks and him getting up into my ribs.  Tells me he is growing and getting ready.  J   My doctor cut the cerclage out on Friday and I was dilated 1cm.  So, it begins.  I know I can stay a 1 for a while… I have a feeling I won’t make it to our due date.  J  

Belly Button in or out?   In.

Wedding rings on or off?   It’s a little fitted so it’s off.    

Happy or Moody most of the time:  Happy.

Looking forward to:   Holding sweet Gabe!      

So, I've got some big updates on Wyatt but that will have to be it's own blog.  We've had a busy beginning of the year... 

In the meantime, here are some pictures.  :-) 

Wyatt had the honor of being in one of his NICU primary nurses' wedding.  He did a good job walking down the isle.  He made it without falling or crying.  :-) 

  

27 Weeks and Such...

How far along? 27 Weeks

Total weight gain: about 13 pounds… That sounds like so much.  Yuck.  My goal is to not go over 30lbs. 

Maternity clothes?  Maternity pants and tops = a must!  

Stretch marks?  Nope.  Praise be to God! 

Sleep:  I tend to sleep pretty deep.  I do normally have to get up to use the restroom but unless it is closer to wake up time and then I do have a little trouble going back to sleep.  James has been awesome about helping Wyatt if he wakes up and letting me sleep.  Then when Wyatt wakes up at 4 am, I get up with him.  James = interrupted sleep, Casey = up and at ‘em bright and early. 

Best moment this week:  At the doctor’s office this week, baby boy showed us his face on the 4D scan.  I think he looks like Wyatt.  We’ve tried before but he would not cooperate.  He’d turn the wrong way or put his arms up so we couldn’t see.  AND to make it better, James was able to be at this appointment to see it live!  So exciting. 

Miss Anything?  My feet.  lol.  I can no longer see them when I look down.  

Movement:  Just like Wyatt, this kid is A.C.T.I.V.E.  You know that feeling you get when you’re on a roller coaster or go over a big hill at a higher speed?  Well, that’s about what it feels like multiple times a day.  It’s a love/hate relationship.  While I LOVE to feel him move, the feeling of my stomach “turning over” is kind of unsettling.  lol.        

Food cravings:  Right now I am loving chocolate milk.  Not the kind I mix myself but the thick, not so good for you, store bought kind.  

Anything making you queasy or sick:  Not really.  There may be something here and there but not to memory.   

Gender:  It’s still a boy!

Symptoms:  So, after talking to a friend last night, I found out I have had some Braxton hicks contractions.  I didn’t think I’d ever had any before.  Not with Wyatt or this one.  BUT apparently I have.  I thought the “tightening” feeling I’ve gotten some was baby pushing down hard but I’m told that’s a contraction.  I had no idea.  Felt kind of dumb.  Whoops.  J  I think I expected pain instead of pressure or light discomfort.      

Belly Button in or out?   In.

Wedding rings on or off?   On.

Happy or Moody most of the time:  Happy.

Looking forward to:   Holding this little boy!        

So, do you think they look alike? 

Some family ramblings.... 

We've experienced some sickness around these parts since Thanksgiving... I guess it comes in waves for the normal.  We got a taste of it for sure.  

Wyatt loves his baby brother and playing with my belly button.  

Right at Thanksgiving, Wyatt got some virus that gave him a fever, congestion and coughing for like 6 whole days.  We were able to manage the fever with meds but it faithfully would return as the meds wore off.  The congestion was terrible to eating and the coughing sucked for vomiting but we made it through it all.  We saw the doc once at day 5 of fever and she said we were doing all we could... fever broke and all is well.  PTL..  

When you have strep throat, you get high calorie, pear popsicles.

THEN... my sinuses started giving me trouble.  The trouble turning into full blown sinusitis (sinus infection) with a BLOWN EARDRUM!  OUCHIE!  That was not fun.  I haven't had an ear infection in many, many years and the pain was awful when my ear drum burst.  I was minutes away from driving myself to the urgent care place in the middle of the night.  I decided to wait until the morning and went then.  They gave me a steroid shot and a prescription to get filled if I didn't feel better in a day or so.  I did NOT feel better in a day or so.  I filled my 10 day prescription and eventually I felt better and my hearing came back... oh yeah, blown eardrum = no hearing in one ear.  

Wyatt was very interested in what the big boys were doing at Christmas1 

So yeah... Then Wyatt woke up one Monday morning with a gunky eye... pink eye.  I had an OB appointment that morning and couldn't get Wyatt in to see the pedi until after lunch.  I took Wyatt with me and just kept the hand sanitize in my pocket, gave him no toys (so that he couldn't drop them and someone have to touch them to pick them up) and kept him in the stroller.  He fell asleep in the car so I had him laying down in the stroller.  He was awake while the doctor was giving me my sonogram, which by the way, I have to be disrobed from the waste down and only covered with a sheet.  Wyatt then proceeded to LOSE HIS STOMACH.... it was a disaster.   I felt so terribly bad and I was stuck laying on the bed, as I was half naked.  Thankfully, I had a blanket in the stroller to help catch some of the vomit and direct it away from his cast.  My doctor was wonderful and got lots and lots of towels to help clean everything up.  Poor kid... and office staff.  I did my best but it was stinky and gross.  It'd been a while since I've had to deal with public vomiting.  We are usually pretty good about keeping it at home, where we have control and cups.  lol. 

gunky eyes.  :-( 

So, on to the pedi to have his eyes looked at.  Yup, Pink Eye it is.  While waiting I was able to better clean up Wyatt.  He did manage to get some inside his cast.  That's ALWAYS THE WORST!  Thankfully there was no ear infection to go along with the pink eye.  I was told they tend to go hand in hand.  The drops were great.  They helped the oozing gunky pretty quickly.  Wyatt did not like having us put them in though.  He's a trooper.  

Birthday snuggles!  

So that was Monday.  James started feeling bad at some point mid week.  He went to the doctor on Friday.  James NEVER goes to the doctor.  He's got the immune system or the tolerance of a super hero or something.  But he tested positive with strep and his doc suggested Wyatt and I come in... I didn't feel like I had strep but took Wyatt in.  What do you know... he tested positive.  Oh my.  

For my birthday, Aunt Robin made me a cake, Wyatt gave me a card, James made me breakfast pancakes and got me a waffle maker and we are lunch at Benihana. 

THEN on Sunday afternoon (my birthday) James started complaining of his eyes hurting.  It'd been almost a week so I didn't even think pink eye until he was laying in bed and said he had gunk... Oh. My. Goodness.... both boys with strep and pink eye.  Thankfully, Wyatt was finished with his drops and James could take them with him out of town in the morning.  There was no time for him to go in himself and wait for a prescription before he needed to leave.  

Wyatt has been waking up before the crack of dawn.... It's been exhausting but look at him.  He was playing with baby brother here.  

Monday, I was feeling sinus-y again and took myself in.  Thankfully it was not strep and WAS sinuses.  The doc gave me a zpack and sent me on my way.  

Somehow I manage to escape the pink eye and strep.  PTL.  Everyone is now healthy!  PTL again and again.  

With all that going on and it's still January, flu season and RSV.... we have decided to be a little more cautious with Wyatt.  I will not be going to Bible study and checking him into the childcare.  We will still take him to church, check him into little village with his buddy and let him be in the room with the other kiddos.  It's good for him.  We'll just give big time instructions on HAND SANITIZER AND HAND WASHING!  Lots and lots of all that.  If Wyatt gets a fever or upper respiratory anything, it can keep him from getting to get a new cast on schedule.  And we don't want to delay new cast.  They get gross. It wouldn't be the end of the world but it's just preferred.  I don't want him in it any longer than we already have to.  Cast life sucks.  

After some early morning snuggles, Wyatt thought I needed another buddy to watch cartoons with.

Speaking of cast life... Wyatt gets a new one on Tuesday.  Prayers for his anesthesiology as well as more progress on his scoliosis curve.  

Wyatt loves to dump out his legos and lay in them... What a mess!  haha.  

Daddy is so much fun! 

A little swing break at OT.  

Such concentration. 

Learning how to change batteries in his favorite toy.  

Awake at 4am, nap at 11... 

Baby brother at 27 weeks! :-)