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....

What is this cupcke thing?

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....

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.