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.

Thursday, April 25, 2013

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!  


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.  :-)  

Tuesday, April 16, 2013

Happy 9 Months Baby Boy

WOW!  Look at that growth!  :-) God is so miraculous! 

Growing Growing Growing!  
Yup folks, he is getting bigger!  And let me tell you, my arms sure feel it!   
Birth:  weight- 4lbs 8.3oz, length- 18.5 in
Discharge Day:  weight- 9lbs 12.4oz, length- 22.64 in
April 16:  weight- 16 lbs 0.6 oz, length- 27.8 in

That is so exciting!  I love that God is allowing him to thrive and grow.  We have our bumps in the road but he is here with us and on the mend!  :-)  And he's still on like 3rd or 5th percentile on the growth chart curve but he is on his curve and that is something be happy about! 

We still do not have any teeth!  Can you believe he has been showing signs for like 4 months now!  It's crazy!  You'd think we'd have at least one with all the drool and chewing he is doing!  I have a feeling he's going to get a few at once... that or we'll get like ONE and then nothing for months.  haha.  

 Wyatt has many favorites!  Sometimes they change from day to day but he has his staples for sure.  
He still loves his Wubbanub!  I'm pretty sure we could consider that his "lovey."  He's gotten so handy with it too.  He reaches for it and puts it in his own mouth.  He'll press with two fingers and hold it in until he has a good suck on the paci.  He just started searching for it in his sleep without waking up, finding it and putting it in his mouth.  That's really great- it means we don't have to jump up as often to go place it in his mouth for him.  

He plays with blocks and musical response toys.  Just this weekend, he let me hand him two separate toys and would hold both of them for a while versus hold one and then dropping it to hold the other.  Today, on his own, he picked up two different objects and held them at the same time and banged them together.  I've been trying to get him to do that for forever now! That was so exciting to see... and he did it in front of his OT!  She was proud too.  :-)  

He loves to stand, jump and bounce!  In his activity center, his johnny jumper, his walker or when one of us is holding him. 

He loves his Daddy!
He loves his Mommy!
He loves his doggy, Ronix!

He basically loves anything he can put in his mouth.  

He really likes to watch his baby sign language videos!  

Wyatt is great at sleeping through the night.  We try to make sure and put Wyatt to bed between 7 and 8 but as close to 7 as possible.  He sometimes will stir and if it continues a for a while where I feel his sleep is being affected or my sleep is beginning to be affected, I'll put him in bed with me and that usually does the trick... for both of us.  :-)  He is a snuggler! 
I've been trying to figure out his napping for a while now.  He likes to take these short 15-20 minute naps.  Sometimes he'll sleep 30 minutes but never longer.  And he'd do that 2-3 times a day.  That last couple of days, his afternoon nap has lengthened.  I am thankful for that because for his age, he should be sleeping 2-3 hours during the daytime.  I'm hoping this is a trend that continues.  I'll talk to his pediatrician tomorrow when go for his 9 month appointment.   


I just posted a long blog about his milk feedings with his pump so I'm not going to rehash all those details.  Go here to see how he is doing with milk. 

As far as solid foods, it's a slow work in progress but progress is progress!  :-)  He usually will take in an ounce to an ounce and a half of puree and oatmeal cereal.  He also try water and juice out of a sippy cup.  We've got all kinds of those sippy cups too.  Going into parenthood, I had all kinds of "we wills" and "we will absolutely nots".  Oh how that changes once you have a kiddo.  And I'll be honest, a lot of them I would have stuck to strictly but desperate times call for desperate measures.  Drinking juice was one of the things I didn't really care for my kiddos to do.  Store bought juice just has so much sugar added and I don't think babies need it.  (I don't mind what you do, it's just a personal preference!)  Now, with Wyatt- I just want him to learn how to drink!  So, if it's milk, water or juice, I don't care.  Once he learns and is comfortable, I'll fight the sugar battle when I get there.  haha.  :-)  

Wyatt is not crawling yet but he is going from sitting to all 4s and doing some rocking.  So, that is big news in our home!  He still does not like to lay on his tummy but we make him do it for short periods of time.  I do all I can to distract him from realizing he's on his tummy!  #whateverittakes 

I wrote earlier about him holding two objects and banging them together.  

He sits up on his own and for long periods of time.  Of course he falls some but that's part of learning!  

He babbles all the time.  We hear some "b" and "d" sounds.  He says "he he he" often.  He has the best laugh and laughs often.  

He understands "no" most of the time.  He usually only hears it when he grabs his tube.  I think that is what he associates it with that because it is almost the only time we use the word.  haha.  I'm just starting to use it when he grabs my face and squeezes really hard or kicks me.  I'm also trying to teach him "gentle touch" when the plays with Ronix.  He's gotten a hold of the dog's ears a couple of times and Ronix was NOT a fan but responded nicely by just yelping and walking away.  (Such a great dog!)

He "walks" backwards in his walker but not forwards.  

Coffee Ground Vomit and I Don't Get Along...

Wyatt is ready to go golfing with Daddy!

So yesterday I put this status update on Facebook:

If you think about it, please pray for Wyatt tonight. This afternoon he had an empty stomach but managed to throw up a measurable amount of the brown coffee grounds (blood). It hasn't happened since but GI wants us to come in first thing in the morning. We've had almost 3 months of almost never throwing up but we've had to up his formula intake because I stopped pumping this week and his body is having a hard time getting used to processing the increase in formula. (I've got a stock pile so the mixture is about 2/3 30 calorie breast milk and 1/3 full 30 calorie formula) and the total daily volume has gone up to. I'm scared to go out with him bc of the puking. So sad for him, he hates it so much! And (last one, I promise) tonight he is sleeping with a special pulsox machine that records his heart rate and oxygen levels and if he does "good" according to his pulmonology doctor, he will no longer "need" oxygen and we can have the medical supply company pick up ALL the tanks! Yea! Thank you for keeping us in your prayers. We praise God for Wyatt's growth and progress every single day! :) 

Here is our update:

Wyatt had a good night.  No more throwing up and no more blood.  Praise God.  Thank you for praying.  The mere fact that we go in to see our GI doc this morning first thing is a miracle.  She doesn't usually have open appointments let a lone first thing in the morning, they usually add them to the end of her day.  She said we must be special.  I agreed of course.  We love our GI doc and she loves us!  If you're in the Dallas area and need one, let me know- I recommend her!  Anyway- she said Wyatt coffee ground vomit could have been any one of several things.  i introduced butternut squash yesterday for the first time (she said this was an unlikely reason but maybe and to try again in a few days and for 3 days in a row and see).  It could be the increase in volume and formula.  His body needs to get used to processing and breaking it all down.  So, Dr. A increased two out of three of his reflux meds.  She didn't do this last week at our appointment because at that time he didn't need them increased (I agreed, things were good- very minimal vomiting at that time) and she was going to let him wean himself off by outgrowing the dosage.  I'm all for that happening if he can do it but with the increase in formula/volume, he is just not ready yet.  The third possible reason for this episode could be g-button irritation.  She is his GI doctor but she is not a surgeon so she can look at it and say it's a possibility but the surgeon is the one that needs to really make that call.  She did tell me somethings to look for.

She also called the dietitian in to go over Wyatt's plan of action for his feeds.  We did have on major miscommunication, totally my fault but we still needed to fix it because of his vomiting.  We went from literally little to no vomiting to throwing up almost every feed and at night.  It sucked and I was already adjusting my frame of mind to not going anywhere with Wyatt because I didn't want him puking all over me, himself and the floor of some public place.  BUT with these adjustments, this should not happen.  Praise God!  I am so thankful for getting to go back in.

So, the original plan of action called for Wyatt daily intake of milk/formula to go from 690mls / day to 810.  That is a lot in our little world.  :-)  To break it down a little more (wish I could insert an excel chart here...) at night Wyatt was getting 385mLs over 9 hours (a rate of 43/hour) and 3 day time feeds of 100mLs (I had pushed the rate to 101mLs/hour putting the feed right at an hour).  He was not just tolerating it but able to play, bounce, jump and lay flat without throwing any of it up.  Life felt good and somewhat normal.  I was not complaining.  And with the new volumes it put the night feed at 450mLs at night over 9 hours (a rate of 50) and the three daytime feeds to 120mLs pushing the rate to 120mLs/hour as well.  This is an aggressive plan.  I am a fan of aggressive as long as Wyatt can tolerate it comfortably and we don't know what he can handle until we try, right!?!  :-)

With those 2 changes, I also requested how to transition Wyatt from my breast milk (fortified to 30 calorie with formula) to formula only.  This was a really hard decision for me to make but it is time for several reasons.  We put our house on the market on the 30th of this month and there is a lot to do in preparation (we have painters  and landscapers here as I type...) then to have showings where we (Wyatt myself and our 100 lb doberman) will have to be out of the house off and on who knows when or how often, packing, keeping the house in perfect order and looking for an apartment and a new house all at the same time.  Oh, and let's not forget Speech Therapy, Occupational Therapy, other doctors appointments and playing and taking care of Wyatt in general... Wyatt's gotten 9 full months of breast milk and I still have more in the freezer to continue using.  He has the milk allergy and as hard as I try, I can never truly know if something has the milk protein or not.  Yes, I could eat at home 100% of the time and know but let's be real, James and I like to eat out and waiters don't know all the time.  They try but you'd be surprised at some of the things that have milk.  It's more than ridiculous!  I felt so much guilt when Wyatt started throwing up, questioning my decision but I know ultimately it's what is right for him and us as a family.  I have to remind myself of this and just rest in the peace of knowing this really is what is best.  :-)

Day one I went all out and did it all.  450 mLs at night with the rate of 50 / hour.  During the day Wyatt received 120 mLs at a rate of 100 / hour all half fortified breast milk half full 30 calorie formula mixed together.  Whew- lots of throw up.  His little body did not like all those changes.  So, I immediately pulled back some before today.  The next night I mixed 2/3s fortified breast milk and 1/3 formula and only gave him 400 mLs but still at the rate of 50 / hour.  I've increased each night by 5 mL (last night Wyatt received 420mLs total and did great).  The dietitian wants me to slow him down there and instead of a 5Ml increase a night go to a 10mL increase over a weeks time.  For the three day feeds we will slowly work our way back up to 120mLs total volume and a rate of 120/hour.  Today I'll start Wyatt at 102 mLs total volume and increase his feed by 2mLs each day as tolerated and once we get to 120, I'll then increase his rate slowly as tolerated.

I give all these tedious details for all the tubie mommies out there.  You never know who is going to have the same problem and it's interesting, to me at least, to know what other kids are capable of tolerating and learning from them too.

Wyatt is doing great and I don't think he ever even felt bad.  I'll post his 9 month pictures and milestone updates very soon!  Just wanted to update everyone and THANK YOU so much for all your prayers.  They've been answered and we hope he continues to accept this new feeding regimen.

I won't know the results of his possible removal oxygen removal at home "sleep study" until they pick up the pulsox and send the data over to his doctor.

Doing laundry wore out Daddy and Wyatt! 


Thanks for praying for Wyatt!!!

Monday, April 8, 2013

100, Yeah, that's right, 100!!!!

James turned 31 last week so we went out and about to celebrate! 

James had to work so we met him at Grand Lux for a yummy dinner!  Aunt Robin joined us to help celebrate 31 years of life.  

I posted pictures last year for James' birthday as well.  I was pregnant with Wyatt and could not even imagine how life would look a year from then and here we sit, blessed beyond measure.  I am so thankful for this man and this boy!  Lord, Thank for his 31 years.  I hope for at least 31 one more with him!  

James was really happy they didn't sing to him when I told the waiter it was his birthday.  

After dinner we went to Aunt Robin's house for some yummy, dairy free carrot cake.  She makes him one every year.  I am thankful for this because 1. it's yummy and 2. I would only know how to open a box and bake.  haha.   James is thankful too!  
Wyatt wore his "I love my dad" shirt for his special daddy!  He loves him so much.
This picture also makes me think of James' dad.  He looks just like him here.  

Aunt Robin has a cat.  This was Wyatt's first real cat!  
Aunt Robin is a personal trainer... a GOOD one... and so we had some fun in her room with floor to ceiling mirrors!
(Need a trainer, contact Robin)

On Saturday morning we headed over to Top Golf with some friends!  We love this place.  A couple of these guys met Wyatt for the first time.  I kept a bottle of hand sanitizer on the table and was a crazy lady making everyone germ-x all the time.

Wyatt with Mr. Brent.  Brent was our best man and lived with us for a while.  Ladies- hr's a good man and loves babies!  :-) 

Mr. Kelly also came out to celebrate and meet Wyatt!  

I didn't have my best day of golfing but I had fun and that is what counts! 

The sun was warm but the wind was brutal.  Wyatt took a snoozer while we finished playing and he finished "eating".  

Chad threw his back out so this is his new swing.  

The birthday guy! 

Miss Whitney snuggling sweet baby Wyatt. 

James is determined to have Wyatt love golf!  I'm totally on board.  It's an expensive sport but it's low impact so I'm a happy camper and we can all do it together once he gets big enough!  :-) (Aggie scholarship please?!?)  

Wyatt loves to play peek-a-book in his car seat!  

Oh you know, just reading a book in the laundry basket, in the bath tub... this is normal right?!? 

#teething .... will we ever see teeth. 

I've saved the best for last.... 100!  Yes, that is a rate of 100 mLs an hour.  I don't know if I ever thought we'd see this!  When we came home Wyatt was barely tolerating 35 mils an hour and we had to keep him upright and somewhat still.  Well, looky here.  100 mils and hour and receiving 100 mils a feed during the day.  That means his feeds are down to an hour!  When we came home from the hospital he was eating for 3 hours at a time and then had an hour break and we would start all over.  He was basically never disconnected.  It sucked and now look at us!  We got GI tomorrow where we will get to also see the dietitian... her goal was 85/hour.  She's going to be so happy.  I am so hoping that we can continue this progress get him down to half an hour and then to also begin taking volume from Wyatt's night time amount and add it to the daytime.  I would love for his tube eating to resemble a more "normal" eating schedule so that the transition to only taking in food by mouth be smoother.... once we get there.  We've still got a long way to go but I just know Wyatt is going to fight through this and understand that eating = a happy tummy!  
So thankful for all these baby step, leaps and bounds both!  Thank you Jesus for Wyatt's growth!  

Parkland Nurses... Did you ever think you would see this for baby Wyatt?!?!?!