God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Wednesday, December 29, 2010

A Little Birthday Fun!

Tuesday evening we had a small celebration at our home for Anna Grace's first birthday. Mommy, Daddy, Zachary, Anna Grace, Mee-Maw and Pops were there. Anna Grace had her first cupcake with one little candle on it. We sang Happy Birthday to her and then she took a few licks of the icing and gagged a little so we said goodbye to the cupcake and gave her some Ritz ceackers instead. She got a singing card from Mommy and Daddy and "Sweet Pea Beauty" - a veggietales movie. It was a low key night but that doesn't mean there wasn't lots of celebrating going on! Here are a few pics and videos from the occassion. Enjoy!

What are they doing?


YEAH.... I'm ONE!


After the cupcake, Mommy lets me play naked before putting me in my PJ's.



Dizzy..... I'm so dizzy my head is spinning....
video


What is this cupcke thing?
video

Monday, December 27, 2010

Happy First Birthday Anna Grace

So on Tuesday, December 28 at excactly 3:48 am Anna Grace will officially be one year old. I really can't believe it has been a year since she was born and then in the same breath I can honestly say that it feels like Anna Grace has always been with us. Doesn't make sense I know, but that's how I feel.

She made her way into the world weighing 8 pounds and 3 ounces at MUSC in Charleston, SC. She was born, not by c-section as was planned, but vaginally in what I would consider nothing short of a miracle on it's own (but that's a story for another day). I delivered her in the OR... just in case an emergency c-section was needed... with probably 20 doctors standing by observing. As soon as she was born she was wisked away with my having just a glance at her before she was taken from the room to be attended to by her own team of specialists who were running umbilical lines and starting life saving medicine. It was surreal. She was then taken to the PCICU and I was taken to the delivery floor with barely a glimpse of my baby. It wasn't until later that morning that I was able to see her and touch her little baby hand and cheek. I had to be taken by wheel chair to the floor where she was at. It was a happy time because my baby girl was born... and it was also a time of great uncertainty. We had no idea what journey the Lord had in store for our little girl.

At seven days old she had her first open heart surgery. The morning of her first surgery was the first time that Brian and I were able to hold her.... she was seven days old before she was ever held by her parents. She was 6 weeks old when she came home from the hospital for the first time.

At 6 months old she had her second open heart surgery. She developed and overcame Chylothorax for the second time after this surgery.

Today... one year after her birth she is growing and thriving. She is crawling and even taking 4 or 5 steps on her own. She has 6 teeth and "asks" for Ritz crackers whenever she is in her high chair. She loves to splash in the bath tub and calls every animal she sees "dog". The little Christmas singing stuffed animals are her FAVORITE toys and whenever they "sing" she does the baby bounce dance. She loves to climb the stairs and loves it even more when we chase her up the stairs saying "get you, get you" - it just makes her squeal with excitement and giggle and crawl as fast as her little legs will carry her. She has her Daddy's blue eyes and unbelievabably she has auburn hair. She weighs 21 pounds now (courtesy of Ritz crackers) and will be moving out of her infant car seat in the next couple of weeks (because I can hardly carry her in it anymore). She likes to look at books and loves her little green "soothie" pacifiers. She also loves her soft pink blankie and sleeps with it at every nap and every night. She can't say the word "no", but she shakes her head from side to side when she want to say no (which is usually when she doesn't want Gerber Baby Food Green Beans). She is finally on a schedule... she get up about 6:30 am.....one morning nap... one afternoon nap and then bedtime at 7:45 pm. She is happy most of the time and loves to play in her brother's room.

My dear sweet and so very precious Anna Grace,
You are so loved. It has been quite a year, your first year of life. We are proud to be your parents. We are thankful for the gift that you are. You are special and we wish you a very happy first birthday!
Love your Mommy & Daddy

With tears of great joy I say thank you Jesus for our daughter....

video

The Innkeeper


A poem by John Piper. You can listen to Piper read the poem here:

Jake's wife would have been fifty-eight
The day that Jesus passed the gate
Of Bethlehem, and slowly walked
Toward Jacob's Inn. The people talked
With friends, and children played along
The paths, and Jesus hummed a song,
And smiled at every child he saw.

He paused with one small lass to draw
A camel in the dirt, then said,
"What's this?" The girl bent down her head
To study what the Lord had made,
Then smiled, "A camel, sir!" and laid
Her finger on the bulging back,
"It's got a hump." "Indeed it does,
And who do you believe it was
Who made this camel with his hump?"
Without a thought that this would stump
The rabbi guild and be reviled,
She said, "God did." And Jesus smiled,
"Good eyes, my child. And would that all
Jerusalem within that wall
Of yonder stone could see the signs
Of peace!" He left the lass with lines
Of simple wonder in her face,
And slowly went to find the place
Where he was born.

Folks said the inn
Had never been a place for sin,
For Jacob was a holy man.
And he and Rachel had a plan
To marry, have a child or two,
And serve the folk who traveled through,
Especially the poor who brought
Their meal and turtle-doves, and sought
A place to stay near Zion's gate.
They'd rise up early, stay up late,
To help the pilgrims go and come,
And when the place was full, to some
Especially the poorest, they would say,
"We're sorry there's no room, but stay
Now if you like out back. There's lots
Of hay and we have extra cots
That you can use. There'll be no charge.
The stable isn't very large
But Noah keeps it safe." He was
A wedding gift to Jake because
The shepherds knew he loved the dog.
"There's nothing in the decalogue,"
He used to joke, "that says a man
Can't love a dog!"

The children ran
Ahead of Jesus as he strode
Toward Jacob's Inn. The stony road
That led up to the inn was deep
With centuries of wear, and steep
At one point just before the door.
The Lord knocked once then twice before
He heard an old man's voice, "‘Round back!"
It called. So Jesus took the track
That led around the inn. The old
Man leaned back in his chair and told
The dog to never mind. "Ain't had
No one to tend the door, my lad,
For thirty years. I'm sorry for
The inconvenience to your sore
Feet. The road to Jerusalem
Is hard ain't it? Don't mind old Shem.
He's harmless like his dad. Won't bite
A Roman soldier in the night.
Sit down." And Jacob waved the stump
Of his right arm. "We're in a slump
Right now. Got lots of time to think
And talk. Come, sit and have a drink.
From Jacob's well!" he laughed. "You own
The inn?" The Lord inquired. "On loan,
You'd better say. God owns the inn."
At that the Lord knew they were kin,
And ventured on: "Do you recall
The tax when Caesar said to all
The world that each must be enrolled?"
Old Jacob winced, "Are north winds cold?
Are deserts dry? Do fishes swim
And ravens fly? I do. A grim
And awful year it was for me.
Why do you ask?" "I have a debt
To pay, and I must see how much.
Why do you say that it was such
A grim and awful year?" He raised
The stump of his right arm, "So dazed,
Young man, I didn't know I'd lost
My arm. Do you know what it cost
For me to house the Son of God?"
The old man took his cedar rod
And swept it ‘round the place: "Empty.
For thirty years alone, you see?
Old Jacob, poor old Jacob runs
It with one arm, a dog and no sons.
But I had sons . . . once. Joseph was
My firstborn. He was small because
His mother was so sick. When he
Turned three the Lord was good to me
And Rachel, and our baby Ben
Was born, the very fortnight when
The blessed family arrived.
And Rachel's gracious heart contrived
A way for them to stay—there in
That very stall. The man was thin
And tired. You look a lot like him."
But Jesus said, "Why was it grim?"

"We got a reputation here
That night. Nothing at all to fear
In that we thought. It was of God.
But in one year the slaughter squad
From Herod came. And where do you
Suppose they started? Not a clue!
We didn't have a clue what they
Had come to do. No time to pray,
No time to run, no time to get
Poor Joseph off the street and let
Him say good-bye to Ben or me
Or Rachel. Only time to see
A lifted spear smash through his spine
And chest. He stumbled to the sign
That welcomed strangers to the place,
And looked with panic at my face,
As if to ask what he had done.
Young man, you ever lost a son?"

The tears streamed down the Savior's cheek,
He shook his head, but couldn't speak.

"Before I found the breath to scream
I heard the words, a horrid dream:
‘Kill every child who's two or less.
Spare not for aught, nor make excess.
Let this one be the oldest here
And if you count your own life dear,
Let none escape.' I had no sword
No weapon in my house, but Lord,
I had my hands, and I would save
The son of my right hand . . . So brave,
O Rachel was so brave! Her hands
Were like a thousand iron bands
Around the boy. She wouldn't let
Him go and so her own back met
With every thrust and blow. I lost
My arm, my wife, my sons—the cost
For housing the Messiah here.
Why would he simply disappear
And never come to help?"

They sat
In silence. Jacob wondered at
The stranger's tears.

"I am the boy
That Herod wanted to destroy.
You gave my parents room to give
Me life, and then God let me live,
And took your wife. Ask me not why
The one should live, another die.
God's ways are high, and you will know
In time. But I have come to show
You what the Lord prepared the night
You made a place for heaven's light.
In two weeks they will crucify
My flesh. But mark this, Jacob, I
Will rise in three days from the dead,
And place my foot upon the head
Of him who has the power of death,
And I will raise with life and breath
Your wife and Ben and Joseph too
And give them, Jacob, back to you
With everything the world can store,
And you will reign for evermore."

Wednesday, December 22, 2010

A Little Bit of Reflection

Here are a few pics of our sweet Anna Grace over the last year. Look how far the Lord has brought her. Amazing.... seriously, it never ceases to amaze me.

Anna Grace Post Norwood


Anna Grace Post Norwood, Pre Glenn


Anna Grace Post Glenn


Anna Grace just a few weeks ago

Tuesday, December 21, 2010

Synagis and Boxed Hair Color

If you have been following our BLOG you know that Anna Grace has been getting her monthly injections of Synagis since November. Synagis is a medicine given by injection to help her develop antibodies to fight against RSV should she contract it. It is not a vaccinaation against RSV as no vaccination exists, but should she contract RSV while taking Synagis her body should be able to fight it a little better. Anyway, Synagis is a medication that is not really offered to the general public simply due to the cost. Her Synagis injections are $3,500 a month. Yes you read that right. She has to have a total of 5 injections over the course of the winter with a grand total cost for Synagis being $17,500 (if my math is correct). Anyway, thankfully our insurance has said they will pay for majority of the cost for Synagis. This is wonderful news and we are thankful. However, our monthly co-pay for Synagis is $200 per month. Really, it's not much money considering how much Synagis costs each month.

I've been trying to think of some luxury items I can give up to help off-set the cost of Synagis. The first thing that came to mind was hair color and highlights. Becaue I have an ENORMOUS amount of grey hair I get my hair colored about every 6 weeks to cover my grey. (Let me just say here that I am NOT old enough to have as much grey hair as I have - it's genetic - we grey early in my family. Seriously). The highlights are just a little extra thrown in there every 4 or 5 months to keep it looking "fresh". Anyway... I have given up the professional hair coloring during Synagis months because lets face it - it's not a necessity, it really is a luxury item.

But, since I'm not ready to "go grey" yet I went out and bought a box of hair color. The haircolor I bought was a permanent hair color - Hydriance by Clairol. The color... a medium brown called "Driftwood". I think they should have come up with a more luxurious name... like "Warm Sable" or "Rich Chocolate"..... but nope... it's just "Driftwood" which if I'm not mistaken is a piece of rotten wood that fell off a tree into the water. Am I right? Anyway..... I box colored my hair this morning and it colored everything fine EXCEPT my grey roots. Which of course was the whole reason for coloring in the first place. Well... it's not entirely true, it did color the grey roots, but not consistent with the rest of my hair.

So, if anyone has any coloring suggestions or tips for resistant grey please let me know because I am open to giving them a try in 6 weeks when I do this again. It really is kind of funny and who knows.... maybe I will perfect the art of boxed hair coloring and never go back to the pricey salon again....... If I figure out the secret I will be sure to share it here with you!

Monday, December 20, 2010

The Nursery....

I want to share with you a little bit about Anna Grace's nursery. Last year, when we were still expecting Anna Grace there was just so much unknown about her condition and what life would be like for her outside of my womb. Like so many other heart Moms, I wasn't sure if we would ever be able to bring our little baby home from the hospital. I was hopeful and that was what I wanted, but......

So, as much as I wanted to prepare a nursery for her... I didn't want to prepare too much because I couldn't bear the thought of preparing my little girl's nursery and her never being able to sleep there. I know, I know.... there are probably many of you reading this right now thinking that sounds ridiculous... don't think like that, etc.... but that is how I felt... as much as I hate to admit it.

So, I found some pretty neutral green crib bedding... we set up the crib, changing table and rocking chair and put the new crib bedding in the crib and that was it. There really wasn't anything on the wall.... it was functional, but that was all. Not cozy.

So fast forward a little bit and we were able to bring Anna Grace home from the hospital. It was nothing short of a miracle and our littel girl was coming home! You would think at that time I would have started to decroate her room a little bit - but truthfully, if she was awake she was crying. She cried a lot. It was overwhelming. She was also vomiting quite a bit and none of us were sleeping. So decorating was really the last thing from my mind. One of my friends gave Anna Grace a special homecoming gift.... she hand painted a picture for Anna Grace's room. For quite some time it was the only thing that hung on her wall.

So here we are... almost a year later and things have settled down quite a bit. Our little girl is crawling around and SOOOOO close to walking. She is happy and smiley and very rarely cries anymore. She's still not the greatest sleeper.... but all in all things are pretty settled for us. So, I have been thinking about her nursery. I really want her to have a proper nursery fit for a beautiful little miracle of a girl. So.... I bought her some new crib bedding (in pink of course) and all the "trimmings" to go with it.

We are HOPEFULLY going to be moving into our new home in the next couple of weeks and when we do I will set up her new pink little girls room. How exciting. I will be sure to share pictures once we get in and settled. What a journey!

Sunday, December 19, 2010

Some Exciting News!

I wanted to share with you all that Anna Grace slept last night from 8:00 pm until 7:00 am. Yes, that's right.... she slept through the night! I know for an almost one year old that shouldn't be such a big deal, but I think it might be the first full night sleep I've had in a year. Seriously. I feel great. I am thankful and truly rejoicing today for my good night sleep. Who knows what tonight will bring, but I am thankful for last night.

Also, here are some pictures from the Festival of Trees we went to a couple of weeks ago. Yes, we are still trying to enjoy Christmas festivies while being germ conscious.... weekday, off-peak hours = minimum germ exposure!

Merry Christmas!



Exploring all the trees!


I caught a reindeer!


Mommy and her babies!

Thursday, December 16, 2010

Little Fuzzy Girl

Yes, Little Fuzzy Girl is the nickname that Zachary gave Anna Grace pretty much at birth. I've never mentioned it before because honestly I was hoping it wouldn't stick. But, she is almost a year old now and Zachary still refers to her as "Little Fuzzy Girl". It started the first time he saw her in the hospital. Post-Norwood. She was probably 2 weeks old and we were on 7C before Zachary got to meet his little sister. I asked him what he thought about her and he said she was a "little fuzzy girl". I guess he described her this way because she just had a little bit of fuzzy baby hair on top of her head. She still doesn't have much more hair today than she did when she was born! So, there you have it. Little Fuzzy Girl. We don't get to pick our nicknames.

Tuesday, December 14, 2010

Cardiology Update

Anna Grace had a scheduled cardiology appointment this morning. Thank you all for praying for her... and for me.

Anna Grace didn't really want to cooperate during her echo today. It is impossible to reason with an 11 month old and despite my best efforts to distract and entertain her she insisted on crying pretty violently during the whole thing. She just has so much anxiety around doctors. I can certainly understand it and it is heartbreaking to know she is so scared and there is not really anything I can do to help her or soothe her. Sigh.... Once the echo was done she calmed right down again and started playing with the bag of toys I brought. She also did the same thing when the nurse tried to check her O2 sats.... cry... cry, cry AND during her weight check.... cry, cry, cry AND during her blood pressure check.... cry, cry, cry. The doctor WANTED to get a blood pressure in the right arm and right leg. We were only successful in obtaining a blood presure from her right leg and as you can imagine it was through the roof with all her screaming and turning blue. Sigh.... My little girl does NOT like the doctor! I don't think we have ever been able to get an accurate blood pressure reading on Anna Grace - which is really kind of scary because we don't really know what it is.

Anyway... after the doctor reviewed the results of the echo he determined that things looked the same as they did last time. Which in my opinion is a good thing. She still has the slight mitral valve leak so he is continuing the keep her on Lasix because of that. He is hoping that she will cooperate a little better during her next echo so he can get a really good look, if not then we'll have to talk about a sedated echo. I really, really don't want to have to do that if we can avoid it.

At the end of our appointment I was asking about her Patent Foreman Ovale which the doctor said that he would not call it that - he said that hole is bigger than what would be determined Patent Foreman Ovale and that he would call it an Atrial Septal Defect. As a heart mom, I am learning it is important to ALWAYS ask questions about your heart baby's diagnosis. Things can change and if you don't ask then your doctor might assume that you know. So.... I was thinking that hole in her atrium was Patent Foreman Ovale, but it is an Atrial Septal Defect instead. Whew... it is a lot to keep up with.

I also want to stop a minute here and say that I really, really, really like Anna Grace's cardiologist. Despite all the crying and screaming he is always playful and understanding with her. Even though it is sometimes difficult to have a conversation with the doctor with Anna Grace crying he never tries to rush through (as tempting as I'm sure it might be). As a matter of fact, it is usually me trying to rush through to just get her out the door to calm her down (which explains my Pantent Foreman Ovale / Atrial Septal Defect confusion)! He also is a doctor that eers on the side of caution which I really like about him. Doctors.... just like regular people have different personalities and working styles and Dr. R is just right for us and I am thankful for him.

We also briefly discussed her next surgery, the Fontan. That surgery will occur - ideally - when she is 33 pounds. Anna Grace weighed 21 pounds at today's appointment so maybe another year or 18 months before that next surgery I would think.

I also shared with him about the Heart Mom's Night Out I was planning and he was really excited about that and even had a few people that he knew that might be interested in attending that I didn't know of. I told him that I would get him a flyer of info about it that he could share with anyone he thought would like to come.

So, all in all - other than Anna Grace being so upset during the entire morning - I thought the appointment went well. We don't go back again unil March. That's 3 months from now. That is the longest we have ever been between cardiology visits and it is exciting and a little scary all at the same time. What a jounrey.....

Offical diagnosis: Hypolplastic Right Heart Syndrome: Tricuspid Atresia, Transposition of the Great Arteries, Aortic CoArctation, Artial Septal Defect, Ventricular Septal Defect, Pulmonary Stenosis.

Friday, December 10, 2010

Walking the Log

Photo taken back this summer at Hatcher Gardens.

The Butterflys....

The butterflys are starting to come - they start fluttering in my stomach usually a few days before a cardiology appointment. We have a cardiology appointment coming up on Tuesday. Now, I don't have any specific reason to think that anything will be unusal about her echo - but with congenital heart defects sometimes looks can be deceiving. For example - most people who see Anna Grace say to me "she looks so healthy" - they really have no idea how fragile she really is. They have no idea how a cardiology appointment can turn your world upside down in an instant. How one day your planning on moving into your new house in a few weeks and the next instant you can be throwing things in a suitcase and heading to MUSC for a heart cath. It really is our reality.

With that being said - after I have all these thoughts run through my head I have to stop.... pray and give my worries to the Lord. It is a constant battle sometimes. You would think after doing this for a year now it would have gotten eaier, and maybe it will someday, but it hasn't gotten easier yet. At least not for me. Sometimes it's several times a day I have to do this: worry, stop, pray, lay it down. Seriously.

It doesn't make sense but as hard as it is to live in a state of worry it can also be HARD to lay those worries where they need to be - at the foot of the CROSS and then place my TRUST in the Lord. No matter the outcome of Anna Grace's doctor appointment the Lord will take care of us.

Of course I am praying that Anna Grace's heart will look great - that her echo will show that her heart is exactly as it should be in this stage of our journey. I really don't have any reason to believe that it won't look great. Please be praying for her on Tuseday and I will keep you posted on the results.

This heart journey is ongoing and I am still learning how to be a Heart Mom.

Thursday, December 9, 2010

I have a friend...

I have a friend named Michelle. I am so thankful for her. She is not a heart mom, however she is a mom and we have been friends for about 5 years or so. She is such a blessing to me - she was a blessing before I became a heart mom, but even more since I have become a heart mom. She has walked this journey with me. I can see why many heart moms blog about their friendships falling away once they became heart moms. I am sure there are lots of reasons why that happens. Specifically for me, since I have become a heart mom, my relationship with Michelle has become very one sided. It's always me calling her needing to talk, vent, cry, etc and her listening - offering advice and comfort. Any time of the day or night. It used to not be this way - I actually used to have conversations with her and ask about her and her family (like a "normal" friendship) - but for the last year most of our conversations have focused on me - or Anna Grace or some medical decision or procedure and I have just needed to talk... and talk. Again, I can totally see why so many friendships and family relationships fall apart during the heart journey. I hope it will not always be this way.... since things have started to settle for us a little bit I am hoping to find my way back to "normaL" in this area of my life. It is hard fnding my way back to "normal" - in lots of areas, this included. But of course, I am changed now by this journey. So perhaps "normal" is hard to find because my "new normal" won't look like my "old normal". Does that make any sense? Nevertheless, I have a friend.... her name is Michelle.... and I am thankful for her.

Tuesday, December 7, 2010

Heart Moms Night Out

So throughout this last year I have met some pretty amazing Heart Moms who live here in the Upstate. I am going to plan a Heart Moms Night Out one evening in January for us all to get toegether and just meet face to face (since many of us became friends through our BLOGS). For those of you that I have a phone number for I will call with the details, but if I don't have your number and you want to come please leave me a comment here on the BLOG and I will get in touch with you about the details. Can't Wait! Also... I'm thinking at some point of organizing a screening of "Hearts of Hope The Movie". Maybe that can be one of our Heart moms Night Out activities???? Let me know if you're interested.

Monday, December 6, 2010

Doctors Appointments and Hearts of Hope

Sorry for the lack of blogging recently. We are fine, just busy with trying to get the house finshed up.... yes, we are still working on renovating the house we bought back in July. We are hoping to be moved in by Christmas or at least the first of the year. I'll keep you posted. It has been quite the project!

We also have some doctors appointment coming up. Synagis, round two, for Anna Grace on Thursday and a cardiology appointment for Anna Grace on Tuesday next week. Please be praying with us about her upcoming cardiology appointment. It has been two months since our last appointment and that one wasn't great... not bad necessarily.... but not glowing either. I am trying not to be anxious about it, but if I have to be honest my stomach is a little knotted up. I will be sure to post the results here next week.

I also wanted to share that I stumbeled across a movie called "Hearts of Hope the Movie". I haven't watched it yet, but you can bet that in my spare time (when I get some) I am going to check it out. I hope you do too. Click here to see the trailer.

Thursday, December 2, 2010

Amazing Video

Please watch this amazing video and PASS IT ON to anyone and everyone you know. Please help play a part in spreading awareness about congential heart defects.

Click here to watch.

Thank you.

Thursday, November 25, 2010

Thanksgiving Day





































Getting Ready for Turkey Day



Hoping you have a wonderful Thanksgiving!

The Bentley's

Monday, November 22, 2010

Reflection of the Lords Heart




Psalm 139: 13,16
For you formed my inward parts; you knitted me together in my mother's womb..........
Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

Saturday, November 20, 2010

Reflections of Something Better To Come

I often put forward this question during witnessing encounters with strangers "Do you believe in heaven and hell?" About 50 percent of the time the response I get back is this "I think we are living in hell."

How anyone can think earth is hell is beyond me, but here are some photos to prove it's not. There are better and more wonderful things coming for those who are in Christ.












Promised Pictures



As promised, here are some pics of my brave little man...


Friday, November 19, 2010

Accident... Good-bye Tooth

So, yesterday the kids and I were at the park enjoying the beautiful Fall weather. We were walking through the forest and Zachary was doing some "work". He was carrying a pretty good sized rock in his hands to move it to just the right spot for his "work" to be complete. Then.... he slipped on the leaves and CRASH hit his face on the rock he was carrying. There was blood everywhere AND there was a tooth missing. One of his top front teeth. So there we were in the forest. I had Anna Grace on my hip and Zachary was screaming and there was blood gushing everywhere. So, I picked Zachary up. He was on my left hip. Anna Grace was on my right and I ran. I ran to my car as fast as I could. Got everyone buckeled in their car seats (amidst uncontrollable sreaming from both kids) and started driving while calling the pediatrician's office to find out what to do. (I know... I know... not the safest thing to do).

Unfortunately, it was lunch time so I had to then call the answering service. They told me to go to the dentist. So... I called my hubby and told him to meet me at the bookstore because I couldn't remember how to tell him to get to the dentist office. He met me at the bookstore and followed me to the dentist. They were closed until 2:00 for lunch. Ugh... so we caravaned back to our house and we put Zachary in the shower to wash some of the blood off and get a better look at the damage.

At 2:00 we called the dentist and they said to bring him in for xrays. So, Brian and Zachary went to the dentist. The xray showed that he had not fractured his jaw (so good), but that the tooth had not broken off like we thought. It had been pushed back up into his gum. Owwww. He also busted his lip and chin pretty good as well. The dentist said they were going to leave it alone right now but we are to watch for any signs of infection. If there is, then the tooth will have to be removed. There may or may not be damage to his permanent tooth. They said we won't know until it comes in... or that it may not come in at all. There is no way to know. The dentist said that his baby tooth will eventually come back down out of his gum and that when it does it will be black and possibly mishapen and then he will eventually lose it.

Also, we were informed that he could NOT under any circumstances suck his thumb. He is an AVID thumb sucker and blankie holder (the two go hand in hand). Ugh... so we bought thumb guards to put on his hands to keep him from sucking his thumb and we took the blankie away. Let's just say last night was rough. He hasn't really eaten anything but he has had a few sips of water. We have a scheduled dentist appointment on Wednesday for them just to look and see next week after some of the swelling has gone down. Poor little guy.

His little baby smile is forever gone and now he looks like a rough and tumble little boy... actually like a little hockey player. I was encouraged to find out that my hubby did the exact same thing when he was three years old and that his permanent tooth came in without damage. (Like Father like Son I guess). I am praying it will be the same for Zachary. So now we just have to pray for no infection and be patient for his little mouth and face to heal. He may look like his Mommy, but he is certainly his father's son! I will try to post some pics of his sweet little face in a few days. I asked him today if I could take a picture and he said no, it hurts too much.

Here is a temporary image (for effect)until I can add his real picture



My husabnd's mother also informed me that when Brian was little he jumped out of his bedroom window (at about Zachary's age). I am hoping that Zachary does not try that one as well. I don't think my nerves could stand it!

Oh... and today is my birthday. 35 today.

Wednesday, November 17, 2010

Quiet Times

There is not much to report for us these days - which is great! It rained here for the last two days which is hard when you're trying to be germ conscious.... can't take a trip to Monkey Joes or Chuck E Cheese or anything like that... so we just stayed in the house and drove each other a little crazy. But... today the sun came out and so we could go out and just enjoy being outside for a while to run around and release some energy from being cooped up inside for the last two days. Ahhhh..... I love the sun! It is so good to just go outside!

Thanksgiving is next week and we are excited. We are going to be spending the day with our parents - pending everyone being healthy. I think Zachary and both his Grandma's are going to make a gingerbread house together. It should be interesting.... full of memories. I will be sure to post some pics of the finished product on the BLOG next week.

We don't have any more scheduled doctor appointments for the month of November and so I am just thanking God for this time of peace.

Friday, November 12, 2010

Synagis & A 10 Year Anniversary

Yes, it's that time of year again. Time for Synagis injections. Time for the flu vaccination. Yesterday Anna Grace got her first dose of Synagis. Synagis is a medication given by injection to help develop antibodies against RSV. Synagis is not a vaccination.

The Synagis dosage is caculated by weight and Anna Grace now weighs 19 pounds 13 ounces so... an increased dosage means two syringes to administer the medication... two sticks...ugh. She also received her flu vacciination yesterday as well - so in total she had three injections. Poor little thing. She cried during the shots and for about 5 minutes following the shots and then seemed to recover well. She didn't sleep well last night, but other than being restless she appears to be tolerating it all just fine. Thank you all for praying for her about this. This is all part of having a baby with a special little heart :)

She will have Synagis injections each month through March. It's ongoing through the winter and she will have these injections each winter until the age of two.

In addition to Synagis.... my husband and I also celebrated our 10 year wedding anniversary on Wednesday. I can't believe that we have been married for 10 years. It really has gone by in the blink of an eye. I have been reflecting on how the Lord has changed us over the last 10 years. My husband and I are not the same people we were when we married 10 years ago. The Lord saved us both in 2007 and since then the Lord has changed our hearts in a HUGE and I mean HUGE way. I am grateful. I am thankful for the husband the Lord has given me. I am proud to be his wife. Happy 10 Year Anniversary sweetie!

What a big week!

Tuesday, November 9, 2010

Christmas Card Outakes

Yesterday I took the kids to Milliken Park to shoot some pictures for our Christmas Card. The weather here yesterday was just perfect. The temperature was warm enough not to have to wear a coat but still cool enough to wear "Christmas" clothes that would be appropriate for a Christmas card. I had their Christmas outfits all picked out and ready to go (thank you Mee-Maw) and I thought to myself, "well, it's now or never". So the kids and I headed off to Milliken Park. I am not a trained photographer by any means and I was the only adult on the trip so I wasn't sure how the expedition would turn out. In summary, we were there about 1 1/2 hours. I took 115 pictures and only three of the 115 photos that I took were any good. So... the three good ones are going on the Christmas card. I'm not going to reveal the "good" ones here today. Inspired by a friend's BLOG (which I thought was so funny) I am going to share with you our "outtakes".

Looking back at it now it is funny. But at the time.... I had a little boy who kept saying over and over... "Are we done??? Can I play???" to which I responded "NO! Just keep smiling" Then he would give me the cheesieest "cheese" smile he could muster and I would say "Don't smile like that, just look at me" Then he would open his mouth wide. Ugh..... three year olds do not take direction well for picture taking. All the while Anna Grace is crawling around in the dirt picking up every little stick she could find and putting it in her mouth. I am seriously laughing now thinking about it, but at the time I was thinking that it was a terrible idea to try and take their pictures by myself for a Christmas card.

All that being said... I am happy with the final Christmas card result. Really, it actually turned out pretty good. AND I have some memories I can laugh about and I will remember for the rest of my life. How awesome is that???? Enjoy the outtakes.....

So I think all three of us decided that Anna Grace sitting on Zachary's lap for the picture was not going to work. Don't they look happy???? NO WAY!


As soon as I would put Anna Grace down for the picture she would try to escape.



Here is my 10 month old daughter eating dirt. Yes, that's dirt she is putting in her mouth. Ugghhhh....

Monday, November 8, 2010

Medicine....

As all Heart Moms can attest - once you have a heart baby with a complex heart defect your medicine cabinet grows. It just happens - and soon it becomes normal. Just a part of your daily routine. You just integrate it into your "new normal" and you don't think too much about it. I was reflecting about Anna Grace's medicine the other day and how our life has changed from before we were heart parents to now. I think the pictures below say it all....... this is part of the new normal when you become a heart Mom.

This was our medicine cabinet BEFORE Anna Grace was born.


This is our medicine cabinet now that we are Heart Parents. We bought this cabinet shortly after we brought Anna Grace home from the hospital because we needed a dedicated place to store all of her "things".


Lots of things..... pill splitter, pill crusher, syringes, medicine bottle toppers, medicine cups, medicine, medicine schedule, medicine logs, etc, etc.

Saturday, November 6, 2010

Fun Fall Memories

In big news this week.....I am happy to report that one of Anna Grace's top front teeth came through the other day. Whew..... she is acting so much better so I hope she is feeling better now. She now officially has three teeth!

In other big news this week.... Anna Grace has been approved for Synagis and will be getting her first Synagis shot next week! Hooray! For those of you not familiar with Synagis - it is an injection that helps her build antibodies to fight against RSV. It is not a vaccination against RSV (as there is not a vaccination available) but should she contract RSV it should make her little body able to fight it better and perhaps avoid a hospital stay. RSV is VERY, VERY, VERY (did I stress that enough) dangerous to heart babies so a Synagis approval is a very big deal to us. She will get one Synagis injection a month for 5 months beginning in Novmber.

Some news about Zachary...... You may remember in a previous post I mentioned that Zachary is taking swim lessons this winter. This is my attempt in giving him an opportunity to be around other children while limiting his exposure to germs - because let's face it - there is A LOT of chlorine in the pool! He has really been excelling at swimming and he really enjoys it too. On Wednesday - he swam his whole swim class without his swim belt on. That's 45 minutes of swimming all on his own. He completed 6 laps - two of which were on his back and also did some diving. He made it look so easy - he is a little fish. His swim teacher told me about a "kids" triathalon they do in the spring and thought that Zachary might enjoy it. I told Zachary what it was and asked him if he'd like to do it... his response....... "Ohhhhh.... I can't wait!" So, it looks like he's going to be participating in his first triathalon in the spring. Now - let me just elaborate a little about the race - for his age group it is only one lap in the pool. Two laps on his bike around the parking lot and one running lap around the parking lot. It's not very intense physically. I think the hardest part for him will be telling him after ONLY ONE LAP that he has to get out of the pool and go to his bike. I can see him saying "NOOOOO - I don't want to get out of the pool"!!!! Anyway. I'll keep you posted on how it goes!

So this week we were fortnuate to have Mimi come spend the night with us and spend some time with us. We took Mimi to our favorite place to go..... you guessed it... Milliken Park! She had never been there before so we had to take her. It was a blustery, chilly day but we had a blast none the less. Here are a few pictures from our day! Enjoy!

Mommy, Zachary and Anna Grace!


Mimi, Zachary and Anna Grace!


Mimi and Anna Grace!


Our Baby, Anna Grace! (yes, she needs a winter hat, some shoes and mittens - we're going shopping TODAY)!

Monday, November 1, 2010

Sleepless Nights and Weekend Fun!

Anna Grace did not sleep well at all last week. It started Monday night and continued on through Friday. She was up several times each night and didn't nap well during the days (hence my lack of blogging). I kept taking her temperature - no temp. I kept checking her mouth - no teeth. She was eating fine, just not sleeping. By Friday morning I was exhausted so I took her to the doctor to see if there was an ear infection or something else going on with her. The doctor couldn't find anything wrong with her except she said that it looked like the four top teeth were going to be coming through soon. OK - so maybe that explains all the sleeplessness??? She slept fine Friday night and has done better since then - not back 100% yet, but certainly better than last week. As a heart Mom, you always think something more serious is going on - I'm still watching her closley - checking her temp - but she is acting fine now - in a great mood, playing fine, eating fine, sleeping OK. Her O2 sats at the doctor office were 89 so she was good there (hooray)! Perhaps the Tylenol is just not helping give her any relief because lets face it - once you've had as much Oxycodone and Versaid as Anna Grace has had Tylenol is just like candy. Anyway, I'm finally starting to feel a little more comfortable now that she seems to be acting more like "Anna Grace".

So, since we all got a decent night's sleep on Friday night I was able to take the kids on Saturday afternoon to Milliken Park with my Mom for some fun fall hiking. The weather was perfect for a hike - the sun was out - the leaves were falling. Oh, it was a really terrific day! It was just what we needed and we all throughly enjoyed ourselves.

Look Mee-Maw - you CAN jump the creek!


Zachary stopped playing long enough for me to take one quick picture!


Even Anna Grace was enjoying nature just "cruuising" on the rocks!


Say cheese everyone!


The woman behind the camera (me) and my two beautiful kids.

Friday, October 29, 2010

Had to Share....

I saw this on another heart Mom's BLOG and I had to share with all my BLOG readers.... enjoy! I thought it was awesome!

Click here to watch this amazing video.

Tuesday, October 19, 2010

Germs and Fall Fun!

So, I have posted before on my BLOG that I am a germaphobe. I wasn't like this before I became a heart mom. Never before Anna Grace was born would you have seen me at the playground dousing my child with hand sanitizer and threatening him with serious punishment if he even dares put his thumb in his mouth before washing his hands (yes, Zach is a thumb sucker). But, life is much different now and everywhere I look I see germs and viruses. I teeter on the verge of being "obsessive" about this. It's been difficult for me - walking the line of living "normally" and still being extremely careful of germs. As we approach cold/flu/RSV season I realize how serious these illnesses can be to a heart baby. So, what's a heart Mom to do?????

I know that every family is different and every family handles the winter differently based on their doctor's advice and their personal judgement. I eer on the side of caution (understatement), but at the same time I really do want my kids to live as "normally" as they can. So I am trying to do "normal" things with them while at the same time minimizing our risk of exposure to germs. I have found that one of the luxuries of being a stay-at-home Mom is that you can do most "normal" things with your kids on weekeday mornings - early - and things are pretty much deserted. So... all of the fun..... no lines.... and minimal exposire to other children. Hopefully next winter we can just be "normal" and not even have to try to go places at "off peak" times, but I think for this winter this is how we are going to roll.

With all that being said, I was able to take the kids to a pumpkin patch and we had the place pretty much to ourselves. It was a beautiful Fall day and we had lots of fun. We had even more fun because Mom wasn't dousing the children with hand sanitizer :) Enjoy the pics.

Oh... to other herat Moms out there - I'd love to hear how your family handles the winter months - or specifically how you handeled your heart baby's FIRST winter - because I know things do tend to relax a little the older your heart baby gets. Thanks for your input :)

Awww... so cute!


I'm a big kid now!


Smile :)


I just need to get to that pumpkin Mom!!!!

Wednesday, October 13, 2010

Anna Grace - Cardiology Appointment

So, many of you know that Anna Grace had a cardiology appointmnet on Tuesday. Anyone who knows Anna Grace or who has followed our BLOG for any length of time knows that Anna Grace has serious anxiety around people and especially doctors. So, as her Mommy, I am always prepared for these cardiology appointments firstly with PRAYER and secondly with a whole aresenal of things to distract, bribe and otherwise entertain Anna Grace during her doctors appointments. I knew she would be having an echo done on Tuesday so I was loaded down with toys, bottle, snacks, DVD's, stuffed animals, pacifiers and anything else I could think of to keep her from screaming during her echo so they could get a good look at her heart. That being said.... they were able to get a decent echo of her heart on Tuesday after I stood on my head, spun in circles, hopped on one leg and promised her a pony (just kidding)! The findings of her echo were pretty good, kind of mixed really. Dr. R said she had good heart function, but that she now has a slight leak in her mitral (sp?) valve. He said we would have to watch that. Also you might remember that during her second open heart surgery (the Glenn) her BT shunt was not removed but it was "clipped" to restrict the blood flow through the shunt with the intention of removing it during her her third surgery (the Fontan). Well, yesterday's echo showed that there is blood flow through the shunt so he sent a copy of his findings to Dr. Bradley down at MUSC to determine what (if anything) needs to be done about this. We'll just wait and see what Dr. Bradley says about what we need to do. Also, at her appointment yesterday her sats we hanging out around 81 which was a tad bit lower than they were 6 weeks ago. Dr. R said we needed to watch that - he said it was fine if that's where they stayed, but didn't really want them to continue to decline. He did increase her medication but only because she has put on a little weight (19 pounds now)!
So... we have a scheduled appointment to see Dr. R again in December - he said that normally we would be switching to just seeing him quarterly, but with these new developments he wants to keep a close eye on her.
I have come to accept that this is just how things are going to be for her little heart. I go to these cardiology appointmens with no expectations and in the back of my mind always prepared to head to Charleston. I feel like if we get to leave her cardiology appointments and go home and not to the hospital then it was a GOOD appointment. I was so thankful last night to be crawling into my own bed with my family all under one roof and NOT making plans and preparing to go to Charleston. The Lord is merciful and I am so thankful!

(P.S. - Just to refresh your memory - Anna Grace's official diagnosis is: Tricuspid Atresia, Transposition of the Great Vessels, Aortic Coarctation, Patent Foreman Ovale, Ventricular Septal Defect, Pulmonary Stenosis)

I like this toy!


Hi Mom!


Let me take a little bite of this cookie!


Anna Grace on the scale - 19 pounds 0 ounces