VLCAD Update

Today was spent in and out of doctors offices.

We had an appointment first with our Geneticist, Dr. Morgan at Vanderbilt Children's.  This appointment was fairly routine.  They checked her weight (15.8 lbs) and height was at 25 inches.  She's in the 98 and 94th percentile for those.  They commented 'she must get held a lot because she has a perfect head shape.'  Yes, indeed she does.

We had a few questions to go over with the geneticist. He confirmed that, for now, it was fine to continue exclusively breastfeeding, pending any unforeseen problems with cardiology.  I had read that MCT oil was good for VLCAD patients but he said her body is handling my breast milk fine and that MCT was not needed at this time.  I've also read a lot about the benefits of coconut oil and that it does make its way through the breast milk. Coconut oil is a medium chain fat (MCT) so if I have it in my diet she gets it in my milk.  He agreed that I should continue with the coconut oil and a healthy well balanced diet for her.

We talked about letting her cry at nap time.  He said it's ok for her to cry.  That babies were ok to cry. We'll see if I can let her cry or not.  I doubt it, but sister has got to learn to sleep in her bed.  She is a good napping partner and she does nap in the sling, but I'd like to have some time for her in her bed.

We talked about skin biopsy for VLCAD.  I had read about some patients having that but he said this wasn't necessary because her diagnosis was already confirmed.  You would have a skin biopsy if the diagnosis was uncertain.

He ordered a CPK test.  This tests the enzyme levels in muscles.  With VLCAD, this can be elevated when the body is under stress.  If her CPK levels were elevated we would discontinue breastfeeding as she would not need the high fat of my milk, and would need the medium chain fats in a special formula.  She has had this test in the past and levels were normal.

We then headed to the Cardiologist, whom we met with for the first time.  Dr. Exil.  He was fabulous.  Heavy on the accent so you had to pay close attention.  First we had her vitals checked, blood pressure, oxygen, and a EKG.  All came back normal and healthy.  Praise the Lord.  After meeting with Dr. Exil, he reassured us that his hope for Emerson was that she lead a long healthy life.  The important thing is feeding her often and keeping her healthy.

He explained VLCAD in a more understandable way.  Folks like you and I, our body stores fat.  Emerson's body does not.  So, daily, she pulls from my breast milk, what she needs.  And this is fine for her for short periods of time.  However, in the event she would get sick and not eat, miss a feeding, etc, her body doesn't have stored up resources to use while she's not taking in any nutrients.  Her body uses glucose, stored in the liver as glycogen for energy.  If there is nothing going in, there is nothing for her to use.  Therefore her sugar would drop.  Which would be bad news for her.  So, if she were to get sick, and not eat, miss 1 feeding, we would go straight to the ER.  A normal cold isn't just a normal cold for Emerson.  Thus the germ freak amplified.

We were given an emergency protocol letter on this visit.  Something to give to the ER should we not be close to our Children's Hospital.  Peace of mind on paper I suppose.  Being that most doctors and nurses have no idea what this is, it list specific instructions what to do for Emerson immediately.

He complimented me on how well she was doing.  Complimented me on what a fantastic job I was doing with nursing.  Reiterated to Lance exactly how hard it is to be a nursing mom and encouraged him to take the night time feedings so I could rest.  I told him I'd bake him cookies every Friday!  We'll see if this happens as it will take planning on my end, to pump in the mornings so he'll have milk in the middle of the night.  It sounds good though!  I haven't had more than 3 hours of sleep at a time since November 23rd.

Once we were finished meeting with Dr. Exil we headed back to Genetics to get the blood work done.  After a failed attempt and a very sad Emerson, we left with an unsuccessful CPK test.  Lance called it quits when Emerson and I were both in tears and the nurser was no where near close to getting her blood.  We'll try it again next time, but I'm NOT looking forward to that.

I feel good about this visit.  Again, we are just so very thankful for newborn screening and the fact that we KNOW that she has VLCAD.  It's not knowing when things can get dangerous.  As Emerson gets older, we will keep her on a low fat diet and give her MCT oil so her body can store those medium chain fats.  We will be hooked up with a dietician within the next few months.  We are still learning, and have so much left to learn.  But I feel like we are on the right path.

We will return to Genetics & Cardiology in 3 months, where will we have another Echocardiogram and discuss introducing foods.

For today, and the days to come we will continue to enjoy this little girl and the smiles and joy that she brings, and try our hardest to not worry about the 'what if's' of this disease.

Thank you all for your continued prayers and support!  Each prayer is felt!

Emerson:: 3 Months

Emmy Boo:: Emmy Loo:: Apple Dumplin'

3 Months Old

Diapers: Target's Size 2

Clothes: most are 3-6 months

Nurses: around the clock

7-10-1-4-7-10{{ish}} (2-3 times at night as well)

Mommys Diet Limitations: No milk, yogurt, etc. 

Attempted cheese on some sandwiches and it caused spit up & fussiness.

Not worth it.

Very limited caffeine.

Sleeps: in our room, beside me, in a bassinet

Thinking about trying the pack-in-play soon.

Naps: on the go, in her bed (minimal), in her swing

Smiling, talking, cooing, laughing.

Found her hands.

Sits in the Bumbo seat and can hold her head pretty well.

Still not a fan of tummy time for too long.

We're working on that.

We have a Cardiologist & Geneticist appointment this week.

Anxious to see what they have to add, if anything.

We've found a Facebook group for parents of children with VLCAD and it's very helpful.

Also, made a new friend on IG, with a son with VLCAD!

What a blessing!!!

Life with 2 is busy, but good.

Hope you all have had a wonderful Sunday!

Our day at the Zoo

 Santa brought us Zoo passes this year.

Santa knows mommy well.  Fresh air and sunshine and wide open spaces.

Sign.  Us.  Up.

Tuesday the weather was looking fabulous on the forecast so we planned a trip to the Zoo.

The weather didn't disappoint.

Mid 60's and sunshine, Lord have mercy, my heart was singing.

Lance was able to go with us so that was extra fun.

2 sets of hands are always best!

Although there were several moms there with 3 and 4 kids.  

Double strollers, hand holding, baby wearing.

That should be an Olympic sport- zoo-ing with all those children!

I'm pretty sure Easton only cared about the playground and the snacks.

I liked the Pink Flamingo's myself.

Strange little birds.

Sleeping on one leg with their necks all twisted and tucked.

But look at the coloring on his feathers.

Pretty incredible.

Hope your Thursday is great!  

We're headed to have lunch with Nana, Aunt Sharon & Ali today!

We're excited!!!

Church---Finally!

One of the hardest things about having a baby is that 6-8 week period where you can't go in public.

Especially during cold & flu season.

Because unfortunately, even the sick go to church.

With Emerson's diagnosis we knew it would be a little longer than suggested before we returned to church.

And this past Sunday was finally the day.

I could not wait to be back in church.

We LOVE our church!

The worship and the Lords presence is always in full effect.

It was so wonderful to be back with our church family!

I knew I wanted Emerson to be anointed after our first drive home from Vandy after her diagnosis.

After church we went down front and met with our pastor and he anointed Emerson.

He prayed over her, praying for her health and her soul.

Such a sweet, sweet moment.

So thankful for our pastor and his heart!

"Is anyone among you sick? 

Let him call for the elders of the church, 

and let them pray over him, 

anointing him with oil in the name of the Lord."

James 5:14

And we sang my favorite song:

God is Here 

There is a sweet anointing in the sanctuary

There is a stillness in the atmosphere

Come and lay down

The burdens you have carried

For in this sanctuary God is here

Chorus

He is here, He is here

To break the yoke and lift the heavy burdened

He is here, He is here

To heal the hopeless heart and bless the broken

Come and lay down

The burdens you have carried

For in this sanctuary God is here

God was surely there!

It was so wonderful to be back to church.

Valentine's Day & Birthday Weekend

 Another weekend has come and gone.

They go so fast.

I'll recap some of our Valentine's Day as well.  

After nap on Thursday we made some Cheerio bird feeders.

They entertained Easton about 20 minutes.

I think we ate more than we put on the hanger.

Friday is donut day but Easton didn't seem interested in donuts.

I asked him what he wanted for breakfast and he requested cereal.

But, my little sir got a heart shaped breakfast instead.

We made cookies and had The Pioneer Woman's Spaghetti & Meatballs for Valentine Supper.

The cookies were a Pinterest recipe...they were YUMMY!

Little hands like to help with sprinkles.

My dad came for a visit on Saturday.

He and Emerson had a nice little chat.

Smiles for days.

And yesterday was Lance's birthday.

We had our first trip to church since Emerson was born.

Had Mexican for lunch.

A little playing outside when we got home.

A family nap.

Breakfast for dinner.

Birthday cake for dessert.

'Twas a good day indeed.

This week its warming up!

I believe we're going to put those Zoo passes we got for Christmas to use this week!

Happy Monday Friends!

Rodan + Fields My Story & SOOTHE REGIMEN Before & After

Ok!  A little brief history.

My dear friend Ashley started selling Rodan + Fields last year.

In October she approached me about selling the product.

I was WAY pregnant at the time & knew I just didn't have time to commit to something new & different.

Plus, I had just lost my job and was going to be a stay at home mom with Easton for a while.

I wanted it to be just us until Emerson was born.   Distraction Free.

I also knew I wanted to take full advantage of the 60 days trial period.

With Rodan + Fields, the products AND the business come with a

60 day MONEY BACK GUARENTEE!

I wanted to make sure I was able to work hard for 60 days to see if this would work for me.

And October just wasn't the time.

However, I kept a close eye on Ashley.

I watched as her business grew and grew.

She added new consultants weekly, almost daily it seemed.

Sister had it going on!

She was working her business successfully, during nap time and after bed time.

Now that's a job that I could go for.

I knew I wanted to try the products and I thought what better way to try them, than to buy the kit and try selling them too.

I knew my skin could use some help, and I wanted to make a little extra money.

And the time was finally right.

I signed up to become a Rodan + Fields Consultant on January 22nd.

Doctors Rodan + Fields are the dermatologist who created Proactive.

What Proactive does for Acne, Rodan + Fields does for aging.

I started using the products the DAY my kit came in the mail.

I started using the SOOTHE Regimen first.

I had a lot of redness on my cheeks and jaws along with very dry patches on my face and neck.

My current moisturizer was not cutting it.

Within 3 times of using the product (night-morning-night---so a day and a half) I could already FEEL a difference.

And within 2 weeks, I could SEE a difference.

See for yourself...the top is before, WITH make up.

Look at the difference in the last picture. My face skin was a completely different color from my neck.

And that's NOT make up.

The bottom is fresh out of the shower.  No make up.

The SOOTHE Regimen comes with 4 products.

A Gentle Cream Wash

Sensitive Skin Treatment

Moisture Replenishing Cream

And a Mineral Sunscreen

My skin was literally drinking up these products.

The Moisture Replenishing Cream made my skin feel like silk.

And dare I say it had a glow to it!?

2 weeks and I was already seeing a difference.

Now, I want to share the products and the business with YOU!

If you are interested in knowing more about the products I would love to use our Solution Tool to craft your own personal skin care routine.

With 4 different Regimens to choose from, there is surely one for your skin issue.

If you would like to make some extra money and use these fabulous products, I'd love to share the 3 investment options we have to get you on your way!

Email me at a (dot) farrar (at) Hotmail (dot) com

I would love to hear from you!

Leave a comment below and tell me your #1 skin issue.

Make sure your email is there too!

I will be drawing from your comments to give away one mini facial!

This includes a Night Renewing Serum, Lip Serum and Macro-Dermabrasion Packet!

So tell me, what's YOUR #1 Skin Issue?!?!

10 on 10:: February Edition

I thought it would be fun to do the 10 on 10 thing today.

10 hours, a picture every hour.

I've been wanting to do a 'day in the life of' post so I remember what our days looked like when I look back.

I'm going to try to do this each month.

It'll be fun to see how our days change as the year goes on.

8:00AM

Laundry started.

Easton has had breakfast. Emerson has nursed.  Laundry being folded on the bed.

9:00AM

The Shred Day 6 Complete

Easton plays with his bow & arrow.  

Emerson sits in her seat or has some tummy time.

She normally last till about 18 minutes then we have to start entertaining her.

After this we head down for mommy's breakfast.

This morning was 2 boiled eggs, blueberries and a cutie.

10:00AM

Nursing Emerson

Easton playing on the floor.

11:00AM

We're all in the floor playing.

Emerson in the Bumbo seat.  Easton and I building.

That's a duck blind and a boat in case you didn't know.

I lay Emerson down and cross my fingers she'll self soothe without me having to let her cry.

No luck.

11:45AM she's out of her crib and asleep in my arms.

12:00PM

Our plan to stay home all day was changed.

Since Emerson didn't nap, there was no reason to stay home.

Sister likes a car nap anyways.

1:00PM

Lunch with Honey.

We'd been there 30 minutes at this point and we're getting a little restless.

Mondays & Friday's Honey is off work so we try to spend one (or both) of those days with her.

2:00PM

Mom's in the back seat while Honey & Easton wait for me to finish nursing.

I go in AT&T to try to trade in my iPhone4 only to be offered $45.

3:00PM

Joann!!!

Our favorite store.

I needed terry cloth and muslin to process some existing orders and make inventory for the Barn Sale.

Of course, I can't pass up the flannel aisle.  Gold dot flannel, cute little London trolly cars- sign me up!

4:00PM

I sit down at my 'home office' to get on a call with the IT guy to get my computer working.

I am now working from home, doing my old job!

5:00PM

Still sitting at my desk.

Answering some emails.

Daddy comes home & I'm trying to decide what we're having for supper.

Daddy gives Easton a hair cut and they take a bath.

6:00PM

Supper Prep {with my little sous chef}

Blueberry Muffins, bacon, eggs & biscuits and apples.

Dinner is on the table by 6:30.

I pump at 6:45 and Lance gives Emmy Boo a bottle.

This last part isn't normal, but it was nice.

I was curious how much she gets at that time of night.  I pumped 6.5 ounces and she ate almost 5.5.

I got all the dishes cleaned up and we've got a happy full belly baby and cookies in the oven.

Now, its time to sit down and breathe a minute, to do it all over again tomorrow.

I'll be back Thursday to share my Rodan + Fields SOOTHE Regimen progress! 

Before & after photos!!

Hope your Monday was great!