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!

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!)

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.  :-)

Tuesday, November 20, 2012

Tippin' the Scales

Wyatt up WAY past his bed time, so I was trying to "wear" him out!  It's the only time I've gotten to use that sling.  He's been too "connected"

Daddy & Wyatt hanging out!  They always crack me up.  :-)

Tummy time with Nurse Angela. 
He fights me SO much more than he does with nurses and Daddy! 

Dr. Richrdson says we need to do more tummy times through out the day... so here we go!

Wyatt went in for a weight check today with our pediatrician, Dr. Richardson.  I am so excited to report that Wyatt weighs 11 pounds even!!!  That's almost an ounce a day (exact = 25 grams) since our last visit on Halloween!  YEA WYATT!!  He is 24.25 inches long and his head is measuring at 14.25 inches.  His head circumfrence has always been what is "behind" and "below the curve" but it's continuing to grow and Dr. Richardson said if there is going to be something that is behind in growing, it's that.  His weight is in the 3%... on Wyatt's curve nicely!  His length is in the 50% and his head circumfrence is <3%.... I'm good with it all because it is all growth and again, on his curve! 

Praise the Lord!!!!! 

On another note, in the last blog I memtioned one sentence being a entire blog in itself... well, here it is...

Wyatt gets my breast milk as his food.   He isn't ready for solids just yet.  I've been told to wait until month 6 or 7 since he was a 36 weeker.  In the NICU Wyatt wasn't gaining enough weight so the doctors started to fortify my breast milk with formula to make it higher calorie.  They even "spun" my milk to see exactly how many calories I was producing.  I think I said it before but I was secretly hoping I would have low calorie milk so that I could eat more cheese burgers, fries, pizza, ice cream.... I could keep going.  Haha.  BUT that was not the case and to be honest, I don't even know if it works like that.  :-)  My milk spun at 20.2 calories per ounce.  The docs ended up adding formula to make it 30 calories per ounce.  It doesn't sound like much but that's a lot for a tiny human! 

Fast forward to coming home, skipping everything I've talked about- the milk protien algergy, Wyatt being put on special formula and then back to my breast milk and then breast milk with special formula added again... We are here and I have some control over how Wyatt is fed.  Wyatt wasn't making it through the night without spitting up/refluxing tons and a fair amount in the day as well.  I just had a gut feeling it was the formula.  He spit more on it in the hospital too while I was going dairy free.  I hated it and just knew that is what was making him spit so much.  He's going to spit no matter what with his insides the way they are but it kills me to see him do it when he might not have to.  He is obviously so uncomfortable when it is happening- gut renching as I am sure many of you know, CDHer, premie or not. 

So... I began cutting back on the necate (smelly special formula) at night.  The spitting got better.  Wyatt was weighing in with an increase so James and I discussed it and we quit adding formula to his night time feeds altogether.  He gets the full amount during the day, just not at night.  He is sleeping the entire night, he may spit once post 6 AM sometimes not at all AND he is gaining weight.  Dr. Richardson felt comfortable with his gain and said she is okay but still wants me to talk to his dietitan at GI to make sure.  So, if he continues to gain we are good.  No one has given me a "goal" weight gain so we'll see what they say.  I'm comfortable with where we are at the moment.  I just pray that by the time we get to solid foods, we can be off the Neocate.  I'm also thankful for insurance because that stuff is $50 a can or more.  CRAZY!!! 


I also wanted to add that if anyone reading this ever has any questions about what we've gone through or are going through, please contact me.  I know I had a hard time keeping up with anyone ahead of me on the CDH journey until we were in the "clear" so to speak, really post repair surgery and I follow a lot people that are "behind" us on the journey.  Even if it's just to have a specific prayer request, we'll pray for you!  We share in hopes of helping others and in doing so, again hopefully, glorify our God of miracles!  

Monday, November 19, 2012

Happy FOUR Months Wyatt... a week late! And More!

Last week our sweet Wyatt turned 4 months old... and AT HOME!!!  How exciting are both of those facts!  Four months ago, Wyatt weighed in at 4 pounds 8.3 ounces and as of a week ago he weighed 10 pounds 5.6 ounces.  Who knows how much he weighs today, being an entire week later. 

Here is Wyatt at birth on July 12, 2012

Wyatt at 1 month on August 12, 2012:

Wyatt at 2 months on September 12, 2012:

Wyatt at 3 months on October 13, 2012:
(we were a day late with pictures)

Wyatt at 4 months on November 12, 2012:

More 4 months pictures:

Growth:  Wyatt is growing like a weed.  I feel like I have a whole new kid some days.  At our last weigh in, which was almost 2 weeks ago and we don't go back until the 26th.  Geez, that's a long time to not know.  In the NICU Wyatt was weighed each and every night!  I may call the doctor in the morning and see about coming in this week. 
Birth:  weight- 4lbs 8.3oz, length- 18.5 in
Discharge Day:  weight- 9lbs 12.4oz, length- 22.64 in
November 7th:  weight- 10lbs 5.6oz, length- 23.31 in
I can't imagine where he is now!  ...I did step on our home scale and then do it again with Wyatt in my arms and it showed he weighs 10.8lbs.  I haven't done the math to see what that 0.8 is in ounces but I know it's more!
Teeth: Wyatt doesn't have any teeth yet!  I am not looking forward to teething either.  Ugh!  I am putting this here so that when they do start to grow, I don't forget to talk about it! :-)
Favorites: Wyatt is such a happy little baby!  I honestly can't complain any about his personality.  He starts his day with a smile each and every morning.  He loves to have his diaper changed.  I mean LOVES!  He knows it's happening and smiles, then sometimes it's all I can do to actually get the new diaper on him because he's kicking and throwing his arms around in excitement.  I am not exaggerating one bit on this one.  It's so cute. 
He likes, not loves bath time.  Right now we are currently giving him a bath every other morning.  For a while he was having so much throw up from his reflux that a morning bath was absolutely necessary because he smelled like the formula we use to fortify his breast milk.  There's an entire blog waiting to be written from that sentence alone.  :-)  I bought these cute little foam dinosaurs he can look at while I get his little body all clean. 
He loves his great granny!  She has been here all week and has spoiled him rotten!  She and him both just adore one another.  She'll sing and he'll laugh.  She rocks and he falls asleep. 
He loves to have his little nose and chin tickled.  Eskimo kisses are a favorite too. 
He still loves his mobile from the hospital.  We have it on his crib.  He's watch those friends circle his head all day long but he also has some new friends on his play mat. 
He has found his hands a while back.  They are always in front of his face discovering anything they can reach.  Just last night, he began to chew on them a lot more.  I'm okay with this as long as he doesn't start isolating a finger or thumb!
Wyatt loves play time.  Even if we're just sitting there with him while he interacts with his toys, he's one happy camper. 
Sleeping: I posted a picture earlier this week of Wyatt sleeping because the boy can sleep.  :-)  He sleeps 10-12 hours at night and takes numerous cat naps throughout the day.  He usually gets a total of about 13-15 hours in a 24 hour period.  He did not do this in the NICU.  He had too much going on there and too many pretty nurses to flirt with!  :-)  And I don't say this to brag or "show off", please KNOW that!  I promise I would trade to have sleepless nights to have a nonNICU/Healthy Wyatt any day of the week!  I feel like it's one of God's gifts and graces... some relief I guess.  I've been keeping track of when he falls asleep and wakes up through out the day to see if there's a pattern.  I would like to try to "put" him down for a nap but we're just not there yet.  He sleeps when he sleeps, except at night.  We do put him down for bed time at night. 
Feeding:  Some of this may sound like gibberish and I'm sorry for that but hopefully I can make it all make sense...
Wyatt has not gone back to any breast feeding since his g-tube surgery.  I try about once or twice a day and sometimes he will "play" for like a minute and then get fussy and other times he is fussy as soon as he realizes what is going on.  He has NEVER taken anything from the bottle.  He'd suck on the nipple and then as soon as you put milk in there, he'd gag and get angery.  I think the most he's ever taken is 3 CCs.... that's nothing.  A speech therepist came on Friday and she did an initial assessment with Wyatt.  Everything she said was positive.  Good suck on his paci, strong cheek muscles, good tongue and lip placement, ect.... He just doesn't want to eat by mouth.  I get it, he refluxes and it's obviously so uncomfortable and so why would he want anything else back there when it feels bad all the other times?  But I will say it makes me so sad and even frustrating at times.  I so badly want to breast feed or have him take a full feed in 30 minutes like a "normal" baby but we aren't there yet.  I have to just have faith that this is where God has us with purpose.  So... where are we with out g-button?  This is what it looks like- 10pm we begin his night continuous feed.  It runs over 11 hours and he gets a total of 385mL (almost 13 ounces).  When we came home, it equaled 35mL an hour.  I've got it up to 38mL an hour.  I know that doesn't sound like much, but every mL increase an hour, is time off the pump!  Oh, and to keep all those 385mLs in his little body, James and I have decided not to fortify is night time feed at all.  If he spits up at all, it's a tiny small amount at the end of the feed... and usually associated with a poop trying to come out.  When it's fortified with formula, he spits up so much more.  We just feel like there is a balance and we're testing to see if he can gain enough without it.  During the day, we begin his first feed at 10am.  Coming home, we were running it at 29mL an hour, totalling 85mL.  It took 3 whole hours.  Ugh!  So, I started thinking... if we run 35 at night, why can't we do this during the day?  So,I did and he has tolerated it!  So, I am slowly continuing to go up.  I do it 1 mL at a time and keep it there for a few days.  We're up to 38mL an hour.  That puts us being connected for just under 2.5 hours.  We do this 3 times a day... 10, 2 & 6.  He gets just over 21 ounces a day.  :-)  I have no clue if that is normal or not for his age.  I'm not sure if I care as long as he is growing, comfortable and happy! I will also add that I am waiting for the day we can start solid foods (puree)!  I think he'll really like it and want to explore all the flavors... or I'm hoping anyway!

Development:  Wyatt is growing so much and so fast.  I was warned by many moms that this would happen.  I don't think I ever thought, "not my baby" or anything like that but let me tell you, I didn't expect it like this.  It's a love/hate relationship.  In one hand I am thinking "where did my tiny little 4 pound baby go" and in the other it's "yea!  He's growing and thriving so much!"   Even with all his growth, he's still at the bottom of the development charts.  He's got his own curve and he owns that.  He has progressed nicely!  :-)  That's all I can ask God for! 

He reaches for things with his hands.  He doesn't quite have control yet but he's improving!  He interacts with toys and people.  He giggles and laughs.  He makes noises like he is talking.  He responds.  I love it!  He is so much fun!  And I know he is not talking but some of his noises really sound like real words.  Again, it is so much fun!  :-) 

He isn't rolling over just yet.  He will roll to his side but that's about it.  He hates being put on his tummy for tummy time.  We do it some anyway for develpoment but I don't blame him, his g-button is probably uncomfortable to lay on. 

Wyatt, just in the last week has gotten so much stronger.  He has more control of his head and back.  He'll sit in his bumbo and last week he'd just slump down.  We are always sitting right next to him in it because he's not strong enough to be in it for more then a few minites.  And he'll get that "rolling" head going and we know it's time to take him out.  :-) 
I totally forgot to post these, so here they are now!  :-)

 We do miss all our NICU nurse and doctor friends.  We hope to visit when go to Children's at the end of the month!  So, expect us Wednesday, November 28th!  Who is going to be working?!? 

We've had Granny visiting for the past week and it's been so fabulous.  I miss her!  Houston, you are one luckly city!  :-)


We are so thankful to each and every person following our story.  Thank you so much for all of your prayers.  You've been a part of something BIG!  God has been so good and in charge!  We are thankful for the cross!