Room Air 100% of the Time / Matters of the Heart

Yup, you  just read that right.  Wyatt is officially ALWAYS on room air, even at night.  The pulmonologist called yesterday afternoon with the at home sleep study results.  He said everything looked really good.  His office said they would call our medical supply company to let them know they can come pick up every single tank of oxygen!!! 

 I would be lying if I told you Wyatt has been wearing it at night and this isn't really a big change for us.  We were putting it on him at night as ordered but in his sleep he would pull the nasal cannula down into his mouth or around his neck and up into his eyes.  We started just pulling it off when he did that in the middle of the night and then we just stopped putting it on altogether because it was so frequent and his O2 stats were always good.  His orders were for 100% oxygen with a 1/32 flow... that's basically NOTHING AT ALL!  But I will tell you, I have this wave of emotion and relief to know that truly no longer needs the oxygen.  It feels good to know God has us beating one of our battles!  Praise His name!  :-)  I am so thankful for the fighter that he has made Wyatt!  

MATTERS OF THE HEART

Alright.  So yesterday we went to see Dr. Gibbin, Wyatt's cardiologist to get a check up on his heart.  It's been four months since we've been in.  He got an EKG and an echo cardiograph.  He did great for his EKG.  The nurses put like a million stickers all over his belly and chest and attached wires to each one of the stickers and took about a minutes worth of information.  A lot of work for a little amount of time.  Those results were good.  Dr. Gibbin came in to see us in between the EKG and echo to see Wyatt.  She complimented him and noticed his activity level.  {He had just woken up from a nap and was a very happy little boy.  He is also trying his hardest to crawl so I felt like the ring leader of a one baby circus trying to keep him still for these test and not letting him fall of the table.}  She also got to see a bit of his reflux at work.  She was really happy he aimed for me and not her.  I was happy about that too.  He hasn't thrown up on anyone else besides family yet (I don't count waiting room floors).  I would have been so embarrassed.  

Then we went in for Wyatt's echo.  He has a history of falling asleep during these but no such luck this time.  He wasn't interested in the Baby Einstein video they had playing for him- it didn't have any words but he calmed down as soon as I put my phone on baby signing time.  I don't what it is about it but babies love it!  

The results from the echo still showed a small PDA and PFO.  Both are small holes in the heart that should close either right before birth or shortly after.  The PDA is so small that Dr. Gibbin is thinking that we can wait until next Spring to do a catheter surgery, if it hasn't closed by that point.  She describes it to minor and quick.  Dr. Gibbin said we would just continue to watch the PFO until he's closer to 3 year old before doing anything there.  She said that could still close as well.  She all the pressures and flows in his heart and his pulsox reading was good and that's why she felt we could wait on surgery.  If it were harming him, the other things would be reading differently.  Also, she did not compare the size of the PDA to four months ago.  I am guessing it's not much different or maybe a tiny bit smaller but obviously nothing too significant or she probably would have noted it.  She wants to see us in six months.  I'll take that as a win!  :-)

We are trying to teach Wyatt "gentle touch" with the dog and us.  He loves to grab Ronix' ears and Ronix is so patient with him.  

He was trying really hard to pull himself up on the side of the crib.  He needs a little help though.  His OT thinks he'll be crawling in the next couple of weeks.  

All in all, we are so thankful.  God is so good.  I am so blessed to have Wyatt as our son.  I know I say it all the time but I honestly can't say it enough.  Thank you!  Thank you for praying with us and for us.  You have made a difference in our lives and help save our son.  :-)  

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.  :-)

The Fast and The Furious

Whew...

And we're off.  James and I were beginning to feel a little anxious about what's to come.  We've been asked on many occasions, "Have you toured Parkland/Children's yet?" "When is your MRI?" and who knows what else?!?  Ahhh!!  We didn't know but now we are beginning to know the answers to these questions and have appointment scheduled.  Praise the Lord.  I got a phone call today from a nurse from our delivering OBGYN's nurse to schedule our first visit.  It will be Monday, June 4th.  We'll go in for a sonogram and first the visit.  We also were told we'd have the fetal MRI on Thursday, June 14th.  And our "family meeting" will be the following week.  Weight lifted.  Just having these on the calendar helps me feel like I have a clue as to what is going on.  Hopefully, we'll have our tours of St. Paul, Parkland and Children's on 4th.  We'll keep on keepin' on updating you.

Last week James and I went to see the lovely Dr. Hickman... I mean the newly married Dr. Zink. Congrats by the way!!! I look forward to hearing all about the exciting tales of being newlyweds!  :-)  And we got the latest echo cardiograph from Dr. Gibbin.   Both visits came back "normal".  Nothing out of the ordinary or alarming showed up.  Everything pretty much is the same.  Wyatt is measuring a little small but that again is normal for CDH.  So, we're just praising God for all the development in Wyatt!!!!

Also, last week my NHE coworkers/family hosted a fabulous baby shower for me.  It was wonderfully beautiful.  I'll post pictures once as soon as I actually upload them!  I am so thankful for all the love that's been poured out in so many different ways!  In my thank you "speech" at the end of the party I was totally choked up.  I have worked with the same people, mostly, for the past 5 years.  They have seen me through dating James to engagement and marriage, me wanting to be pregnant and becoming pregnant and supporting me through all Wyatt's issues- encouraging and supporting me/us.  It really is an amazing place to work.  It's going to be weird to not see these people 5 days a week.  Again, thank you so much.  :-)  

Praise God from Whom All Blessing Flow

It's been a busy and not so busy few weeks.  My apologies for my absence and lack of updating.  Lately, no new news has been good news!  :-)

I went to see Dr. Watkins.  I am no longer receiving sonograms from her office since I'm getting them every week from Dr. Hickman.  As much as I would love to see Wyatt even more, this is a good thing.  Our insurance only covers 80% of everything and the bills have begun to come in and we don't need to see a charge for an unneeded sonogram on there.  At my appointment (Dr. Watkins monthly) I was weighed- I'm doing good on my weight gain, measured- good as far as I know, Wyatt's heart rate was taken, given a progesterone shot, had blood taken for my thyroid- results came back "not just good but perfect" and got to share Wyatt's pictures with Dr. Watkins and my nurse Izzy!  One great thing that came out of this office visit was that Dr. Watkins said I could come in every other week to get shots without making an appointment or being charged with an office visit.  I just need to call in and make sure they aren't backed up.  It's perfect!  

A week and half ago James and I went in to for our "cervix check up" appointment.  Dr. Hickman was on her honeymoon having fun so we got to meet her partner, Dr. Zaretsky.  He is a really nice guy, knows what he is talking about just like Dr. Hickman but also puts it a different way that was nice too.  What we found out at that visit:

Questions asked:

• Since my cervix is holding so strong, can my workout restrictions change at all?
• It's about the same.  I can walk, swim and do some light yoga. 
• I've had some periods of time where I feel a little down, not necessarily depressed or for any longer then a morning or so but is this something to be concerned about?
• No but going swimming or for a walk should help.
• How close to painting can I be?
• Not at all or in a professional grade mask for shorter periods of time and well circulated air flow.  (We opted for me to just not be near it at all!)
• In the best case scenario, what is the shortest amount of time Wyatt could spend in the NICU?
• It could be as little as 48 hours for Wyatt to go into surgery or it could be weeks.  Then he would have recovery.  It could be a big range of possibilities, a couple of months to over 100 days.  It all depends on how strong his lungs are when he arrives to how he takes surgery.  We found out we really hope an ECMO machine is not needed.  That pretty much means Wyatt has a 50/50 chance of making it home. 
• Measurements from sonogram:
• The doctors are looking for a head to lung ratio of 1.4 and our little Wyatt is measuring a 2.3 (bigger is better!)
• Then there was another percentage taken but neither James nor I can remember what it is exactly BUT we do remember that a good result would be 45% and Wyatt is measuring at 65% (again, bigger is better and we were told this is EXCELLENT!) 
• It was mentioned that Wyatt has a lot of fluid to float around in.  No one seemed concerned but I am wondering what this could mean, if anything.  
• Last but not least, I got a shot!  James is in the clear! 

So, once again, we've gotten good news for our situation.  We've just been really encouraged through how good God is.  Even if we weren't getting all these good results, I feel like we've just been given this faith that can come from no where else except the Lord.  There is just a peace about this little one growing inside of me.  Thank you once again for following along with us, praying for us and the doctors and encouraging us so much!  

Wyatt has been moving like a crazy man.  He has to be really strong.  I've taken some punches and kicks that only a strong little baby boy could give.  :-)  At times, I can watching him moving.  He literally moves my stomach already.  This is probably normal for being at the end of my 2nd trimester but I like to take it as more encouragement!  

On Wednesday, James and I go in for double appointments.  At 1:30, we'll see the fetal cardiologist, Dr. Gibbin again for our check up.  If you recall, we got lots of good news from her a month ago.  We're just praying that Wyatt's heart shows continued growth and development.  That his chambers are still a good size, his ventricles and aortic arch aren't narrowed, his valves continue to look good, there be no leaks and there be no fluid around his heart.  Directly after the echo, James and I will venture on downstairs to see Dr. Hickman for one of the long looks at Wyatt.  He'll get lots of measurements taken and we'll hopefully have some more updates.  

Coming up soon we'll begin seeing Parkland and Children's, get a fetal MRI and meet up with our team. :-)  

On another note, the school year is in the 7th inning stretch.  There are 18 kid days left and 19 days total.  It's a crazy feeling.  On one hand, it feels like any other year that is coming to a close and on the other hand, this is it.  No more classroom teaching until further notice.  Wow!  I love my job, my school, the staff, the parents and most of all my kiddos.  I will miss it greatly (well, not the grading and report cards but everything else).  Packing up my classroom is going to be a beast.  I don't know what to  keep (just in case and for teaching at home), what to give away, what to leave for who takes my place and what to trash.  James will be up there on my last day to help me and knowing him, he'll want to trash it all... so anything I want to keep, I better pack up ASAP!  :-)  

Wyatt has now also been to his first Texas Rangers and Dallas Mavericks games!!  Whoop Whoop! 

James and our friend Chad started painting the nursery today.  I was completely kicked out of the upstairs because of how strong the primer was.  Hopefully next weekend they can knock out the actual painting!!!  I'm so excited to see everything come together.  I've got a small plan for his bathroom as well!  Pictures will come as we make some progress.  I also taped his curtains.  I am making them stripes!  :-)  

I made a new chalkboard, finally.  I'll take a belly picture tomorrow before church and post a "weekly" update! 

On another note, someone near and dear to my heart found out she has stage one breast cancer.  She goes in May 9th for a full mastectomy.  If you would keep her, her family and her doctors in your prayers well, we would really appreciate it greatly.  

Wyatt's Echo #1

Yesterday (Thursday) James and I went to see Dr. Gibbin at Children's Medical for Wyatt's echocardiogram.  If you aren't sure what that is, don't worry, I didn't either until I looked it up online and YouTube.  Simply put it's basically a super duper sonogram. :-)  The doctor wasn't in the room for the actual sono, just the tech but she was in the next room watching on a screen.  She came in at the end to take just a couple more pictures of Wyatt's heart and then proceeded to show us what she saw.  To be simple and to the point, she said

• the valves look good.
• no valve leaks.
• no fluid around the heart.
• the aortic arch looks good, there is no narrowing (if there were he would need an additional surgery).
• there is some compression of his left ventricle and left aorta but it's normal and she is not alarmed at all.  
• Wyatt's heart is still on the right side of his chest but it's not tilted too far.

Overall, Dr. Gibbin was very positive and encouraging.  She wants to see us in a month to check again to make sure nothing changes.  She also suggested a good way to organize all the paperwork, information, ect we are getting from the doctors.  I went ahead and bought everything needed to execute this task!  :-)  

God has really held us up through this and He knew we needed news like this.  He loves Wyatt so much.  And He shows us that daily through just about everything.  Our friends, family doctors and complete strangers have all showed us so much love and support.  It has been overwhelming but in a good way.  We still ask for continued prayers as always.  Our hope is that we can glorify God and always reflect all honor and glory back to Him each and every day.