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.

Tuesday, December 25, 2012

5 Months, ER Visit, 5 Years and of course, MERRY CHRISTMAS!

OH.MY.GOSH! 
It has been 3 very busy, jam packed weeks.  Between myself and Wyatt we had 20ish appointments plus a trip to the Emergency Room.  Whew, I am SOOO glad that is past us now.  I'll begin with Wyatt's 5 month update and pictures.  It was on the 12th but I took them a week late because of our business and our camera took a trip to Paris (yes, France!).  If only I could see the things it saw (in person) and snapped pictures of.  I'm sure I could get a looky from the photographer. 

Just to give you a picture of the craziness...

The birth announcement I made but never sent out.  By the time I got a picture I liked and had it made, it was too close to Christmas to have printed up and sent out.  So here it is on the blog!



Growth:  He's still growing at a good rate.  His GI doctor said she'd like to see him gain at least 1 pound a month.  I feel like that is a fair and attainable goal thus far.  Hopefully we can be over achievers and not just meet the bare minimum. lol. 
Birth:  weight- 4lbs 8.3oz, length- 18.5 in
Discharge Day:  weight- 9lbs 12.4oz, length- 22.64 in
December 19th:  weight- 11lbs 13.....oz, length- 24.5 in
Teeth:  Wyatt does have a tooth coming in now.  It's so hard to believe.  At first I was like, no way... that is NOT a tooth coming in but when his speech therapist was here, I asked her and she said, yup, it's a tooth.  It's his upper left lateral incisor.  Odd right?  Well, it hasn't broken any skin or anything, but you can certainly feel it up there and he's drooling enough to fill a pool so I know something is going on.  :-) 

Favorites: Wyatt really is such a sweet little thing.  (If you're reading this in my Texas accent, you can read that as "thang"!)  His disposition is just so laid back.  He does have his moments but they are far and few between... as well as short lived.  Who could ask for more!!??!! 
He loves to chew on his nasal cannula in conjunction with his fingers.  He is the master at pulling it down.  I feel so bad though because when he does that, he loosens his dots (the stickers on his check that hold it in place) and I end up having to replace them sooner than I'd like.  His poor little checks take such a beating with me pulling the sticker off before it's ready.  Makes me hurt for him.  
9 times out of 10 this is what I see when I look at Wyatt. 4 of those 9 he's as happy as can be and chewing on his nasal cannula (he's got a tooth coming in) and the other 5 he's fussing bc when he, himself pulled it down to his mouth, he did so in a manner that left it in an uncomfortable position and poking his gums. #sillyboy #lovemyson

He is still enjoying bath time.  He gets a big kick out of splashing around with his feet.  I end up soaked by the end.  It's so much fun!
He likes to be held to fall asleep.  Who doesn't right?!?  He is usually refluxing some about the time it's bedtime so we tend to allow him to fall asleep in whatever position is comfortable for him.  It is so hard to watch him reflux.  His meds do a lot but they don't eliminate it all. 
He loves looking and giggling at himself in the mirror.  It just cracks me up! 
He likes soft, light weight toys right now.  He also likes things that light up and play music.  Oh the joy... ;-) 
He found his feet!  James and I have been introducing him to his feet for a couple of weeks and now he actively looks for them and grabs on.  He also likes to play with the slats in his crib.  He'll pull his feet up to the side of him and climb them up the slats and twist himself around.
The kid still LOVES to have a nice fresh diaper on.  He thinks it's just the greatest thing ever!  I'm sure I'd feel the same way if I had to wear one too. 
He also likes to be sung to.  I'm not much of a singer nor do I remember the words to songs.  In fact, I'm awful at it as well as singing in general most of the time.  BUT I've mastered "You Are My Sunshine" and a couple of others.  I'll sing them over and over and over again for him.  I really do need to expand my choices to pull from... I try but I usually end up making up new words or getting my ipod and singing along with those songs.
Wow- he has a lot of likes.  I feel like I could keep on going. 
Sleeping: My little man is still sleeping 10-12 hours at night plus several little 20-30 minute naps throughout the day.  He's got this loud snore.  Sometimes it turns into kind of a high pitched snore... like we can hear it in the other room without the monitor.  We're seeing ENT for this.  In the NICU, they felt he had a narrowed nasal passage.  The doctor has ordered a sleep study.  From that they will decide if they need to do further testing which would mean putting him to sleep and possibly have to have surgery to correct the problem.  I am unsure how I feel about a surgery.  I'm just praying we don't get to that bridge... but if so, I'll cross it when we get there and James and I will figure it all out. 
Feeding:  Oh my sweet Wyatt.  He is still not taking anything from the breast or a bottle.  We have speech coming to the house twice a week to work on this process.  He's got a great suck and we had a swallow study done this week.  Everything was good there too.  Side note:  He did not like having the swallow study done.  It wasn't bad or anything but he just doesn't want to take anything by mouth, I couldn't hold him and they had a big machine next to his head ready to take pictures.  He just wasn't having it.  I really am praying that solids will help him realize what this eating process is supposed to look like.  I honestly just think he doesn't know and he's never really felt hunger.  As long as he is ready, I plan on beginning puree foods in a month! 
Development:  In this journey that we are on, a lot of the time we have to trust the advice that we are given and just go with it and see where we land.  One of the roads we were advised to go down was ECI.  In short it's a government program to help with Speech Therapy and Occupational/Physical Therapy.  We set up our appointment with them, not knowing what to expect.  I had heard of the program but hadn't thought too much about it because we have private insurance and they've been great at approving all the ST and OT Wyatt has needed.  I wasn't sure if this was in place of, along side or what so of course I went in with some questions.  From my understanding, they would basically take the place of our current ST/OT.  I immediately was hesitant but willing to see what they had to say.  I like our ST and OT ladies and we are comfortable with them already.  They did the evaluation.  It was the first time I sat on "that side" of the table.  As a teacher, many times I've had to sit down with parents and discuss where their child is delayed or struggling.  It's never easy but wow, to be on the receiving end in this unknown environment... I didn't like it.  I know their job is to look for delays or things that are wrong but it just felt like I was under the microscope.  I felt my sinful nature want to lie about the things he does at home, I didn't lie.  I thought to myself in the internal debate, what good would that do?  That wouldn't help him.  I also couldn't figure out what they were looking for him to do, based on his age, if the activities were expected or not.  Wyatt was also not having any of it.  He was cranky and I had to calm him down a couple of time throughout the evaluation.  They left the room to calculate his scores and came back shortly.  The OT said she ran the numbers twice because she couldn't believe he came out so "high" and she just couldn't believe based on what she physically saw that it wasn't showing a delay and she still recommended OT.  I agree he needs OT but she was a little too "shocked" for me.  And of course I know he needs speech.  That's no surprise, the kids on a g-button and takes basically nothing by mouth.  Anyway, I pretty much knew leaving that we were going to decline ECI services for now and stick with Therepy 2000.  

One of the things I noticed at the ECI evaluation was that Wyatt would track objects and voices but if you dropped something he would keep his eyes on the hand and not the object.  So, we're working on that some.  His Therapy 2000 OT brought some cause/effect light up/song toys and Wyatt really had fun with that so I bought him several for Christmas.  It'll be fun to watch him play with those.  

He reaches for things, plays with and chews on his hands and fingers and he has finally found his feet.  He hasn't brought those to his mouth yet but he definitely grabs and holds on.  He is also beginning to sit up some with our support and encouragement.  :-)

He still isn't rolling over front to back or back to front but he'll go part of the way.  Something else we're working on.

 
Emergency Room
 
So, Thursday, December 13 we had to take Wyatt to the ER.  It was our first trip and I'm sure not our last.  My doctor has be amazing about getting us in to see her any time I call with a concern...I mean like within a couple hours of me calling.  They've also called me back very quickly any time I've just had a question.  They consider Wyatt to be a priority patient and even have us come in the back door so he isn't exposed to any waiting room germs.  Amazing!  Anyway, I called her because Wyatt spit up and it had coffee grounds, which is dried blood.  Kind of scary.  This could mean a whole assortment of possible things with a wide variety of severity of out comes.  Dr. Richardson felt we should go to the ER just in case it was a more severe situation.  Thankfully, it was on the lighter side.  They felt Wyatt's g-button was irritating his stomach so they upped his antacid meds and sent us on our way home.  I think I packed up half our house before leaving, just in case he was admitted overnight.  You might say I panicked a little... but I did a good job at looking like I was keeping my cool.  I just did a lot of praying on my way there.  Thankfully James was able to meet us there and quickly. 

The FB Updates:
Please pray for us and wyatt. We are on our way to the ER at his doctors advice bc he had coffee grounds (specs of blood) in his spit up.
Wyatt is asleep on my chest while we wait on blood work. His initial exam of the basics "look good" ...not sure where we go post blood work results.
Blood came back with a little bit low hemoglobin count (10. Something) and the GI doc thinks his g-button might be irritating his stomach- hence the blood. We're upping one of his meds and if there is still coffee grounds tomorrow we need to call GI and let them know... Either way we call GI tomorrow and speak to them, which I needed to do anyway. Thank God they don't think it's an obstructed bowel or something! We're still here but should be going home soon. Wyatt is still asleep on my chest snoring. :) Thank you for praying! Please keep him in your prayers that this is what it is and nothing worse!!!

Five Years of Wedded Bliss
FB Post: 
Every day for the past 5 years, we have gotten out of bed and said "I do" over and over again. Some days were easy and others, not so much but each day with you, @jamesaodavis, has been a true sanctifying blessing! God is good, has always been good and will always be good. Thank you for 5 years of wedded bliss and for our most handsome, full of joy son! I look forward to forever with you!
Friday, December 21 James and I celebrated our 5 year wedding anniversary.  None of our babysitters could watch Wyatt so we just stayed in and hung out.  It was great.  We were really tired anyway.  We have a night out coming up soon, so we'll just tack that on to that night and celebrate my 30th birthday and (hopefully) and Aggie win at the Cotton Bowl.  (One of my amazing family members hooked us up with some tickets!)

MERRY CHRISTMAS!!
I'll post our WHITE Christmas Pictures in another blog.  This one is long enough and I need to go to bed.


***Disclaimer:  This blog post was written over the course of several days so if my thoughts don't seem to flow, they didn't.  :-)