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!

Hand Foot & Mouth

Bless my poor baby.  Friday night he came down with a fever, 102.2 at the highest.  Saturday we had an appointement for a well visit for his 18 month check up (25 lbs, 32 1/2 inches long).  After a good once over and a close inspection of some random bumps, a good look in his mouth, it was determined he had the dreaded Hand, Foot & Mouth.  It's a virus, so there's nothing you can do about it, other than keep him comfortable and hydrated as much as possible.  {Riddle me this: chicken pox is a virus also but we have a vaccine, so why in the world do we not have a vaccine for this?}

Saturday was tolerable.  Little fussy in the afternoon.  But Sunday, Sunday was AWFUL.  Poor appetite.  Fussy.  Mouth was very painful.  Lots of bumps.  On top of the usual eczema this makes for an itchy mess. 

We've had 2 days home and looks like we have a few more on the books.  Improving each day but still needs to be home.  The sores in his mouth aren't yet gone all the way and until they are we have to stay home.  SHUX!  I'm enjoying this time with my boy. 

His spots are improving today, however, his fever went back up to 100.3 this afternoon.  There are a few patches that look pretty bad so we'll stay home just to make sure we don't infect anyone else and that we get back to 100%.

Considering how he looks, he's acting just like his chipper self. 

I'll spare you the picture of his hiney.  It's awful.  But, good news is, it's clearing up nicely.  The eczema spots got the worst of the bumps for some reason but those too are clearing up.

I don't know if this helped, but we had a prescription cortizone cream (2 1/2%) and I lathered that on last night after his bath. I have also been using a prescription antibiotic ointment on those eczema spots to help heal those.  And vasoline on the hiney.  So, we're managing.

It's awful, but we're surviving! 

15 Month Check Up

We had our 15 month check up- ON TIME {Actually 4 days early}!  I know, hold your french fries, right.

We got 2 shots (HIB & DTAP).  I'm still on the fence about shots, but I look at it this way, I got them, Lance got them, most people get them...so I'll get them for Easton too.  For now.  I think for the most part they are completely safe and will prevent so many bad things and protect him from lots of germs so I'll listen to the doc's and do what they say. 

Easton weighed in at 24 lbs on the nose and was 31 inches long. 

He's got the tiniest feet ever, but those are soon going to be a size 4.  We are in 3's now, but about to make the move up. 

As for pj's, we're in a 18 month if they're one piece or a 12 month if they are tops/bottoms.

As for shorts, we're still 12 months. He's short legged so his shorts look more like capri's.

Shirts are either 12 or 18 months.  Some 12's are perfect, some are too little.  Some 18's are perfect, others are too wide in the shoulders.

So, there's the stats. 

Happy Hump Day!

We're WELL again

Good heavens. One downside in daycare are the germs that come along with it.  And, let me tell you, once you get rid of something, you have a few weeks reprieve {if you're lucky} and then you get something else.  This time, it was a fever.

It started Saturday afternoon. It may have started before then because he was a little flushed all day but acting fine.  We took his temperature on Saturday afternoon and it was 102.7.  Sunday I pretty much alternated Tylenol and Motrin around the clock.  Sunday afternoon it got as high as 103.5.  I stayed home from work on Monday and we went to see Dr. S to confirm that it wasn't his ears or from the 1 year shots (MMR & Chicken Pox can cause delayed fever up to 2 weeks later- JOY).  He said he thought it was a virus with a sore throat and fever.  Monday afternoon his fever was back up to 102.  Tuesday, me and daddy split the day since he still had a fever.  His temp Tuesday afternoon did go up to 100.2 but went right back down on its own in less than an hour.  So, it was safe to go to school today. 

We did a lot of napping, a lot of sitting on the deck when it was shady or on the front porch when the sun was out back.  It was fun to be at home with my snuggly boy.  I will have to say though, it was exhausting!  It's a lot of work to be a stay at home mom!  CHEERS TO YOU GIRLS! 

But hey, it wasn't all bad.  Just the afternoons were sad (as pictured above)

This was lunch time on Monday!  Happy as a lark! 

That's my boy!!!

Time at home was nice but it was good to get back to work and school and ROUTINE today!  We THRIVE on routine here in the Farrar household! 

Here's to NO SICKNESS for a while!  We've got a BIG weekend coming up. Uncle Tyler is getting married to Jamey and we've ALL got to be healthy!  Please Lord, help us be healthy!

1 Year Check Up...

...2 Months Late...oops.

I'm a stickler for rules and doing things on the EXACT date, but with all the sickness and funk going around, we were going to way too many sick visits to worry with a well visit.

But we finally made it to our 1 year check up. 

It's funny, the first time we walked in there, I was TOTALLY overwhelmed.  Easton had a little jaundice, had some eczema, a blocked tear duct, I had tons of breastfeeding questions, I wondered if we were doing things right, and then 1 short year later, I walk in with all the confidence in the world.  There is no book, no website, no nothing that can prepare you for motherhood\parenthood.  The books are great, and Lord knows I've read my fair share of websites, blogs, forums, but really---the best advice I ever received was to 'trust yourself'.  Man, if I could have heeded that advice early on, I would have been a lot less overwhelmed.  My worries of 'is he getting enough to eat, is he napping right, can you hold them too much, etc etc etc' could have all been avoided if I'd only trusted my God given motherly instincts.  Who knew??? 

Anyways,

Here's how Easton measured up at his 1 year (+2 months) Check Up

Height: 30 inches

Weight: 24.6 lbs

Head: 18.5 inches

He's a big boy!

We did get a FULL ROUND of shots.

I do have mixed emotions about vaccines but for now, we vaccinate.

These shots did a number on him.  The past shots  have not bothered him.

We got 4th dose of Pneumococcal
First MMR

First Varicella (Chicken Pox)

First HepA

He was Fussy McFuss for about 24 hours but after that he seemed to be better.

Here's to another healthy year!

Be careful what you wish for...

Since last Friday I've been watching the weather and waiting for the next sunny day.  I'm a lover of sunshine, flowers and most things outdoors...so I was waiting on that sunny day to determine when I THOUGHT I might deliver Easton.  As the weekend wore on Thursday was looking like the day- warm, mid 60's, sunny- great day for a baby I thought.  All weekend I told Lance I felt like we were going to have Easton on Thursday.  He assured me I was crazy and that Dr. G told us most first time pregnancy's go past their due date.  Still, I felt like Thursday was the day. 

SO, yesterday, I go to my 39 week apointment.  Dr. G examined me, we talked, then he says "I'm going to check with Debbie and see if we can induce before your due date." What?!?!?!?!  Ok, now, this is what I WANTED to hear, what I WISHED to hear, but never did I think he'd say that!  So, he goes to talk with Debbie and she comes back to say "How does THURSDAY at 7:30 sound?"  Oh dear- Thursday, this week, the day after tomorrow...the water works were opened!  I tried to regain composure and went to schedule my 6 week post-partum check up and then headed to the truck.  Once I hit the door, I called Lance. 

It went a little something like this:

me: Are you ready to have this baby?

Lance: nuh uh...you're kidding???

me: I'm not kidding, Thursday is the day

Lance:...........................................................

me: sniff sniff

Lance:  Are you crying?

me: Yes

Lance: Boo, you've been saying Thursday all week, this is what you wanted!

Yes, that is what I wanted- after all, a sunny day is a perfect day to have a baby...but, oh me...now I'm nervous.  Last night, Lance and I went on a date- we went to Stoney River for dinner and then to the mall to look for some baby clothes.  One last date without having to find a babysitter.  My last day of work was today.  I worked a half day today and then my co-workers took me to lunch.  I went and had the car seat base installed by a police officer.  Who knew that it would be so hard to find someone who was certified to do so.  I called 15 or 20 police stations, fire departments, state offices to find someone certified to make sure it was in correctly.  I feel pretty confident that I can reinstall if need be.  So, that was the last major item to check off the list. 

Tonight, we'll get our bags packed, get the house clean, enjoy our time together as a family of 3 (Kirby included), love on Kirby a lot (because I'm having a SERIOUS time thinking about being away from her for 2-3 days but Lance assures he will take celebrate Tyler's birthday and try to get some sleep.  I can assure you that last item on the list won't happen.  Last night every time I rolled over, Lance's eyes were open too.  We were wide awake all night!  Tomorrow will be a big day though with lots of emotions so we need some rest. 

Easton, we are ready to meet you and welcome you into our family!

Happy St. Patty's day!

38 Weeks

Today we went for our 38 week visit.  We had an ultrasound that apparently Dr. G does routinely to make sure your fluids are ok- to determine IF you carry full term that you've got enough fluids.  Mine were just fine.  Little Easton was a bit to big to get any new photos of him but we did get to see his heart beating, see his brain, see arms and legs, organs, verify again that he was a boy---even though the sonographer played a cruel trick on us..."You know what you're having right?"  We beam with pride and say "yes".  She says "A little girl, how exciting"  She almost had to pick daddy up off the floor!  For that brief instant our hearts sank.  Its amazing how many thoughts can go through your mind in 10 seconds!  It was funny though!  But she confirmed, that indeed, Easton IS a boy.  She confirmed that he is head down and his body runs along my right ribs and his arms and legs are near my stomach\left side. That jab I've been getting must be a knee, elbow, foot or hand.  She saved the best information for last- Easton is weighing in at 8.1 lb based on her measurements.  Of course, this can be off a pound either way- so I'm pulling for 7.1 and not the up side of 9.1!  Oh heavens- looks like we might have a line backer instead of that lefty baseball player.  Lance and I both were big babies so I knew we weren't going to have a tiny baby...but 8.1 with 2 weeks left, geesh!  

After waiting an hour for our doctors appointment we finally saw Dr. G.  I'm at 1.5cm!  Progress!  Makes me a little nervous\excited\anxious.  My blood pressure was a little up from what it is normally so he sent me for some blood work after my appointment.  Those results should be back on Thursday.  I'm fairly confident that everything is fine- I think it was just the anxiety of the day elevated it slightly.  

Here's a pic of me at 38 weeks- only 2 short weeks to go!

 

And...a little 38 week questionairre...
Sleep: I WISH!  After 4 nights of no sleep, I think I'll take some Nyquil tonight as a sleep aid!

Best Moment of the Week: getting to see Easton on the monitor. Although we didn't get to see his face, we still got to see lots of amazing things about his little body. 

Movement: my jabs and punches have changed to rolls and lumps- my belly can take on a completely different shape depending where he's laying!

Food Craving:  I eat lots of Chick Fil A and lots of Cereal- this week a breakfast favorite has been fresh peaches and yogurt.  I LOVE COLD things!  Don't give me anything hot!

Ailments: lower back pain, tightness in stomach, EXHAUSTION, not as much indigestion, thanks to my friend Zantac 150!

Labor Signs: I had my first contraction Sunday in church.  Everyone had said "you'll know..." and I didn't believe them...but as I sat in church holding my breath wondering what in the world that pain was- I KNEW I had my first contraction!  That also CONFIRMED that I WILL have an epidural at first opportunity!  I have nothing to prove- give me the meds!

What I'm looking forward to: the excitement of the day of delivery

Weekly Wisdom: Take it easy, rest, spend time with your spouse.
 
Enjoy your week! It's looking like Springtime here in Nashville! THANK THE LORD!  Bring on the buttercups!

37 Weeks

I went this week for my weekly visit with Dr. G.  No major change but without divulging into the details, we'll just say there is progress.  Nothing that led him to think I'd deliver early or anything like that, just normal routine progress.  Dr. G did suggest cutting back my hours at work, so that will start tomorrow until I deliver.

With that said, welcome 37 weeks! 3 more weeks to go!

...and a little sneak peek at the nursery (notice my shelves that Lance built! LOVE THEM!)

... hopefully finished pictures to come this weekend.

34 Week Check Up

Today I went to see Dr. G.  Everything looks normal and I go back in 2 weeks for my 36 week check up and from there I start my weekly visits.  Heavens, this is going so fast!

Now, a little questionnaire about week 34...

Maternity Clothes: uh, yes. And who designs these things anyways!  Nothing fits.  For work, I have a (yes, a...ONE PAIR) trusty pair of black pants and at home- the ever faithful yoga pants.  In my next life, I'm going to design materinty clothes for REAL pregnant women because whats in the stores will only fit if you are 6 feet tall and 100 lbs...and, well, that's not me!

Sleep: Need some.  I haven't slept good since the Friday we got tons of snow!  Ever since, I've been up and down a million times a night either going to the bathroom or drinking maalox and eating tums.

Best Moment of the Week:  Spending time with Lance and Kirby just the 3 of us.  We don't have much longer where we can do that.

Movement: Lots!  Easton is a very active little boy.  "They" say your baby is the most active between 24 and 28 weeks but I haven't felt any difference- he's just as active as ever- and strong too!

Food Craving: Not so much a craving, but I eat a lot of cereal.  Breakfast and lunch sits well but dinner does not, which leads me to the box of Frosted Mini Wheats every night!  I figure it's good for the fiber and the calcium in the milk. 

Food aversions: We're going to call this one DRINK aversions.  I cannot drink Dr. Pepper anymore.  It was a sad day when I figured out this was causing some of my heartburn. It is my favorite drink in the world but it gives me indigestion like you cannot believe.  I can't wait for the day when I can have a big styrofoam cup full of DP!  MMMMM!!!!!! For now, it's sweet tea, water and cranberry juice.

Ailments: Heartburn\Indigestion at night- lower back pain

Labor Signs: May have experienced some Braxton Hicks contractions but I'm not sure what they feel like, so I'm not sure if I'm having them...

Belly Button:  now I sport an outie- 'nuff said

What I miss: getting ready with somewhat ease, painting my own toes, clear skin...

What I'm looking forward to:  besides holding my little bundle in my arms of course, eating turkey sandwiches, drinking DP, going to the tanning bed- however it'll be sunny soon after I deliver so hopefully we'll be on the deck\at the pool soaking up some rays- Lord, I hope he doesn't have fair skin!

Weekly Wisdom: Remember each moment- good or bad.  I am so very fortunate and honored to be able to carry a child and I know many can't do that.  This is a GIFT from God! 

(Donuts compliments of my sweet friend Diane at work!)

All our waiting has come down to this- this 45 minute appointment that would set the stage for the next 20 weeks of pregnancy and the rest of our lives!  We couldn't be more thrilled!

We got to our ultrasound at 8:30 and after about 20 minutes with the sonographer and a what seemed like a million snapshots of our little babies brain, organs and limbs we got to see that our little baby was a boy.  When she first tried to see what "it" was, he was sitting on his feet, but after some moving around and some additional pictures of other orgnans- she tried again.  It was then that we found out that our little one was a boy! 

To say that Lance is excited is an understatement! The look on his face when she told us it was a boy was priceless.  He had a smile plastered on his face the rest of the day.  Our main concern was health first...and once that was clarified- it was all smiles and praise for our healthy baby boy!

As he was moving around his little arms and legs were very active.  Lance said he's pretty sure he's a lefty!  I'm left handed and Lance was a baseball player, so that would be a good combination.  Leftys in baseball are a hot commodity. 

A few times it appeared as if he was waving to us and giving us a thumbs up.  He was very active all day.  He must have known that we were thinking of him and all he would become.

Lance and I both had the day off and spent it telling our family and friends.  I told my dad first.  He had originally said he didn't want to know but when I called him he couldn't resist. We went by my mom's work and I text Ali at the same time I told mom. Ali likes to know she's not the last to be in the know.  Afterwards we went to Lance's parents house and told Cindy (his mom) and Tyler.  We called his dad and filled him in on the news.  He's pretty excited to eventually get all the baseball gear back out!  Everyone is very excited to welcome this new little boy into the family. 

As I prayed for him this morning, I was almost brought to tears thinking of what he will be one day.  It's so real now, to pray for HIM and to have his little face in my mind as I pray for him.  What a blessing to carry this child and to be his mother.  Lance and I are thrilled with the thoughts of raising this child and watching him grow.

I Samuel 1:27 says "For this child, I have prayed and the Lord has granted me what I asked of Him."  This is the verse that fills my soul today.

Thank you Jesus for this good news and for the blessing of this baby boy.

(From the side- this is his profile- sorry about the quality...)

(Front View- 3D Ultrasound)

New Doctor

Today I went to meet my new doctor.  We'll call him Dr. G. 

I had not had the best experience or connection with my previous doctor, so after some deliberation, I switched. He came highly recomended from my boss so I called him up.  He's affiliated with the same group that I was with but just at a different hospital.  I met with him today and he was great!  He was very informative, to the point, direct yet NOT pushy. 

We talked about 2 concerns that I had voiced with my other doctor and he gave me his input.  I was\am unsure of whether or not I want to get the flu\h1n1 shot or not.  He "recommended" that I get it but said I was an adult and could make my own decisions for me and my child.  Now, that's what I like to hear.  I am still undecided as to what to do about these immunizations.  He said if I was to get the seasonal flu or the H1N1 that I would more than likely be sicker than most but that they would treat me with Tama-Flu- same as if I was to get the shot and get the flu.  These are both up in the air for me- but I have 4 weeks until my next visit so I'll decide by then.

The second topic up for discussion was genetic screening.  My previous doctor had been very pushy about genetic screening.  I informed her that no matter what the outcome might be of said screening, we would not choose to terminate the pregnancy.  Dr. G (new doctor) said that unless I even thought I would consider terminating based on results, he would not suggest any genetic testing.  He stated that the 20 week ultrasound would show MOST genetic abnormalities and that genetic tests were dangerous for the baby.  So, enough said- end of discussion.  We were on the same page on this topic. 

We went through 16 weeks worth of questions and he wrote up his own chart for me.   He did say my TSH levels were on the high side of normal so he sent me for some blood work and I should  know those results in a week or so.  I feel very confident in him and his ability to care for me as well as deliver our child.

We have rescheduled the ultrasound to November 2nd at 8am, with my 20 week check-up to follow. I will be 19 weeks 6 days at the time of the ultrasound so hopefully our little one will be cooperative and we will know if he\she is a he or she!  I still don't have a preference as to if it's a boy or girl.  I just want a healthy mind, body and spirit.  Lance put a little poll up at the top for your votes on whether you think it's a boy or girl, so go ahead, make your predictions! 

Stay Tuned,

Annie

14 Week Check Up

Today was our doctor’s appointment. After yet another 45 minute stint in the waiting room we finally went back. I was a bit surprised at the ease and care-free-ness of the tech on duty when we heard the heartbeat. I don’t know, I guess I thought there would be a big production, a smile, confetti, something…but no, a little jelly on the belly- locate the heartbeat long enough to get the heart rate (a solid 146 I might add) and poof- she was gone. I mean, hello- this is our first time to hear the heartbeat and our first pregnancy wasn’t viable, so I would think maybe a little bit of sentimentality would have been on hand. Nope, nada, nothing. Maybe the doctor would have those missing items in her lab coat. Wishful thinking. The doctor came in, said the heart rate was good, and answered a few of my questions and again- poof. I was whisked away to the check out desk to schedule my ultrasound. That has been scheduled for Monday, October 26th at 8am. I’m sure we won’t be sleeping Sunday night in anticipation of what our little baby is! All in all, I’m a little unnerved about the doctors visit today- the bright spot it- our little baby has a heartbeat and all seems normal for the time being!

Next on the list- Flu Shot or Not??? I’m in a bit of a pickle when it comes to the Flu Shot. I’ve had maybe 3 flu shots my entire life- so needless to say I’m not an avid supporter. However, being pregnant puts me at a higher risk if I did get the flu. I’m not sure what to do- shot or not? What do you think? As for the H1N1 shot, I think I’ll pass. This being the first dose that they distribute, I’m a little apprehensive about its side effects and the safety of it. This has brought up an array of questions for me- as far as what to do and what not to do at the time of birth as well. I don’t want to give any unnecessary pricks and sticks to my little one if not needed! I’ll be doing my research on those items coming up soon!

More to come,
Annie