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.

Wednesday, July 29, 2015

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! 




No comments:

Post a Comment