Today we met with the Cardiologist and the hole is still there. It is the same size that it was 2 weeks ago. They found a piece of tissue that is growing and may have to remove it once inside. They won't know until she is in surgery but if they opt not to remove it... she will go in every 6 months to have it looked at and if they feel that it is becoming a danger she will have to have yet another surgery. Please pray that it is easy to remove or better yet that it gone when get in there. We go back in three weeks and we will be deciding on a location & date for Lyric's surgery. We have the options of Dallas, Tulsa, or Houston. Amy (mother of Ella Dawn) has given us a great report on their experience in Dallas so that is where we are leaning towards.
Lyric is gaining weight (YAY!) and eating well once again!
We tried formula with my milk and that didn't work... longest week of no eating and one really fussy baby :-( So we went back to just my milk and she is doing sooooo much better! She has shots on Thursday, she will only be receiving 3 of the 5 immunizations because they don't want to put any stress on her body. Our prayer is that she gets big & strong for her surgery and that she stay healthy!
Please pray for us to have wisdom on where to go & for Lyric to be a chubby baby ;-) Thank you for the prayers!

Today's doctor visit

Today we went to see the doctor for another check up and great news... Lyric broke the 8lb mark & now weighs 8.2lb!! YAY!! She is in the 1.17 percentile... so she is on the charts!! The doctor said that we are entering the stage where it will start to get a little harder with Lyric because her body will start to feel more of the stress from the defect. So please pray that her little body handle this stage good.
We were talking to the doctor today and we were telling her that we had to go to the ER on Tuesday because Lyric wasn't eating well and since she is on a diuretic (Lasix) we wanted to make she wasn't getting dehydrated. All the doctors & nurses there wanted to hear Lyric's murmur because they said it was so impressive... not exactly what I was wanting Lyric to be known for but anyways... Lyric's doctor said the impressive part is that the murmur isn't from Lyric's heart defect! The reason this is so amazing is that had the doctor not heard the murmur she would have never order the chest x ray to find that her heart was enlarged... then the doctor never would have sent us to have an EKG & Echo done... then we would not have found the hole. God is so good even with the delivery of hard news He is protecting and preparing the way. They really don't know why Lyric even has a murmur!

In God is my salvation and my glory;
The rock of my strength,
and my refuge, is in God.
Trust in Him at all times, you people;
Pour out your heart before Him;
God is a refuge for us. Selah
Psalm 62:7-8

God is good... knowing the plans He has for us is for our good is the most reassuring thing! We have seen God's hand so much and we are thankful that we can lay all our cares upon him! Thank you for the prayers!

Lyric - Update

We went to see Lyric's pediatrician today to monitor her weight, oxygen levels, heart rate, and overall check-up. They had hoped by changing Lyric's eating schedule to every 2 hours that we would be able to put some weight on her but she lost a little weight so they've added some calories to my milk! We think the reason she lost the weight is that she had some extra fluid built up but she was put on medication last week to help with that... we think and are hoping that she has just lost her water weight and will now start to gain!! Good news is that her oxygen level is great & she is still the happiest baby in the world! We go back Friday, we see the cardiologist next Tuesday and then back to the pediatrician next Thursday! We hope to find out more details for the coming weeks on Tuesday from the Cardiologist and will keep everyone posted! Thank you for the prayers and all the love!

Trust!

Choosing to trust and this song says it perfectly.

Least I'm tempted to forget
I'll tie your love around my neck
I'll write your words upon my heart
Lord, I won't forget how good you are

I'll dwell upon your faithfulness
I'll rest within your promises
and when I'm walking through the dark
Lord, I won't forget how good you are

And I will trust, I will trust You
I will trust You Lord with all my heart
And I won't forget how good You are
I will not forget how good You are

You gave me everything I have
and my whole life is in Your hand
When what I fear is closing in
Lord, Your faithfulness will never end

And I will trust, I will trust You
I will trust You Lord with all my heart
And I won't forget how good You are
I will not forget how good You are

And even in the darkness
Even in the questions
Even when the hardest time of life are at hand
Yeah even in the darkness
Even in the questions
Even in the times that I'm not meant to understand

I will trust, I will trust You
I will trust You Lord with all my heart
And I won't forget how good You are
I will not forget how good You are

Trust by Sanctus Real
Click link to listen
http://bowensheart.com/wp-content/uploads/2010/09/Trust-worktape2.mp3

Forever changed

This is how our day started... first doctors visit so happy!

Where to begin, I really have no clue... I never imagined that Tuesday September 14th, 2010 would forever change our lives.
Yesterday we took Lyric to see her Doctor because she has had a cough and we wanted to make sure that it wasn't RSV or a bad cold. The doctor listened to her chest found no reason to think it was RSV but she heard a murmur, she said that sometimes when babies get sick they can develop a murmur but she wanted to do a chest x-ray to make sure we didn't miss anything. We did the chest x-ray and found that Lyric's heart was enlarged... they repeated the x-ray to make sure it wasn't the angle of the x-ray and again her heart seemed large for her small body. Our pediatrician then sent us over to Children's hospital to have an echo cardiogram done. This took about 25-30 minutes and Lyric did great she just laid there and kicked a little. The tech finished up the ultrasound and I asked if I could dress and hold Lyric and she said that she just needed to check real quick with the Pediatric Cardiologist... at this point I felt my throat closing but tried to tell myself it was just routine... Travis was like "I'm sure this is just routine!" The doctor came in and listened to her heart and got up and said "let me draw you a diagram so I can show you what is going on." I then felt all oxygen leave my body... as a mom I felt I had been hit by a truck. He went on to explain the way a healthy heart works and then he told us how Lyric's was working. She has a large hole in her heart a condition called Ventricular Septal Defect... we don't have too many details right now but he said that it can be corrected with surgery.
A ventricular septal defect (VSD) is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart.
This is the most common heart defect in babies... 2-6 babies out of 1000 are born with it and in 80-90% of these cases the hole will close on its own but in Lyric's case the hole is so large, they give it a 5% chance of closing on its own. We have begun bottle feeding Lyric my breast milk so that we can monitor her intake. She is having a hard time eating because of how hard her heart is having to work it is like she is running and trying to eat at the same time. Also she is burning a ton of calories working so hard and she is not taking enough in to make up for it. The doctor told us "To be honest, you need to be prepared for surgery because in my 25 years of doing this I've never seen a hole this size close on its own." These are words you never want to hear as parents and although this maybe a more routine surgery for the doctors it shook our very beings. Open heart surgery on our little perfect baby girl... I had never felt so... everything at once! Travis is a strong man and I'm so thankful for him... I have only seen him cry twice since we have been together and yesterday we both cried as we held our sleeping Lyric.
I don't know why God is allowing us to face this but I do know that His plans are perfect towards those who love Him. Please pray that the hole closes on it own and that in the mean time Lyric doesn't get sick because they said that it can be very dangerous with her heart defect. I have seen God do amazing things and I know that He will do more than we could ask or think!


The LORD is my strength and my shield; my heart trusts in him, and I am helped.
My heart leaps for joy and I will give thanks to him in song.
Psalm 28:7

Lyric during the ultrasound... she was asleep at this point!

Life as I know and love it!

This is our little "Miss smiles a lot" as her daddy calls her! She is an amazing baby... she hardly cries, eats great, sleeps great and keeps us smiling with her! Just had to share a few pics from this month!

She has been in her own room for almost 3 weeks and she loves it! It took some getting use to for me, I was use to just watching her sleep... I swear I got no sleep the 1st 5 weeks of her life and by the time I was sleeping through the night it was time to go into the crib! She slept great from the get go but me... not so much! I'm a worrier... bad habit I know!

Now lay her down, pray over her, and kiss her goodnight!

She is sleeping through the night and I already feel like she is a grown up! Silly I know but she seems so independant.

I'm very thankful for all the advice I've received from my mom & sisters they have and are raising happy, healthy kids and I can already see that Lyric is a very happy, content baby! Thanks ladies!

Travis... what can I say about Trav!

Well for starters... He is AMAZING!

Amazing husand, amazing daddy, worker, provider, protector, friend, and so much more!

I love that he is a hands on Dad. We have our differences on what is best at times but we talk and are figuring it all out together. He makes her smile, calms her when she is crying, and loves her the way only a dad can! He is an amazing father and I feel honored that God blessed Lyric & I with him!

"Worth it All" benefit run for Ella Dawn Burk

Time October 10 · 2:00pm - 5:00pm

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Location Shawnee, OK -specific location pending....

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Created By Leslie Click

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More Info Save the Date.....
1 mile, 5K, 10K run/walk
All ages welcome, coordinated by Morganne Lyon
t-shirt with registration.. $20.00 or less
See below for Ella's story and why we are running!
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Ella’s Story
By her mother, Amy Burk
It all started on December 8th! I was feeling nauseated in the evenings and so we decided to take a pregnancy test… yup it was positive at only 4 weeks! With the possibility of me not being able to have a baby, we were beyond ecstatic! On December the 19th I started having severe cramping and then began to bleed, I bled for 4 days and after talking to the doctor we knew that the chances that we had lost our baby were very real. I was 5 1/2 weeks pregnant when I had my first ultrasound; there it was, the most beautiful flutter on the screen. A heart so small it just flickered but we cried and thanked the Lord for His protection over our baby! We knew right then what a strong heart she had! By January 8th I had become very sick and the vomiting had become so frequent that I could not even take a sip of water and keep it down, so Jon and my mom took me to see my doctor. I had lost 8lbs. and was so weak I couldn’t walk. I was immediately admitted into the hospital and remained there for the next month. During my stay I was given every nausea medication you can think of but still no relief. I had 2 separate ultrasounds while I was there to check on the baby, a scary time waiting to see that heart beat. But again there it was beating so strong it brought us to tears. After I was discharged I continued to vomit 3 to 5 times daily. At 21 1/2 weeks we had the BIG sonogram, we watched intently, waiting to hear if we were having a boy or girl! They said everything looks great and IT’S A GIRL!! The excitement quickly changed to a gripping fear when the nurse called the next day to tell me they had found an abnormality with Ella’s heart. I listened in shock and then she told me we had an appointment with a perinatal specialist in ten days…longest ten days ever! We were told at that appointment Ella had something called hypo plastic left heart syndrome. All the information was new to us, and at that time they gave Ella about a 75% chance of survival. We returned in 2 weeks for a routine sonogram and to meet with the pediatric cardiologist. It was at that visit we were told that Ella had another very rare heart defect, a restrictive PFO. The combination of these 2 defects was extremely rare and very complicated. They gave her about a 20% chance of survival, we were devastated. It was then we had to make the decision on where to deliver. After much research and prayer, we felt the Lord leading us to Dallas Children’s Medical Center. Because of the severity of Ella’s condition the doctors in Dallas all agreed that Jon and I would need to be in Dallas to stay by 37 weeks pregnant in case I was to go into labor early. They planned on delivering her via c-section at 39 weeks. We were blessed to be accepted into the Ronald McDonald House to stay the last 3 weeks of my pregnancy. Ella was born on 8-9-2010 at 3:23pm, what a miracle! Jon and I got to touch her little hands for a few seconds before they whisked her away into the cath lab where they immediately did her first heart procedure. When she was 1 week old they took her in to do her first open heart surgery. Unfortunately her lungs had more damage than the surgeon had anticipated so he did something that had never been done before, and did a temporary fix and sewed her up. They watched her closely for the next week and when she was 2 weeks old they attempted the same surgery, this time it was a success! Since then the doctors have had a few concerns from time to time, but overall her recovery has been phenomenal! We have seen the hand of God time and time again as He has protected her. Although this journey is not what we would have chosen for ourselves, we wouldn’t change it if we could because it has helped us to learn to appreciate the small things in life, grow stronger in our faith, and we have felt God’s love greater than we ever have before. God has showed His love to us through other people by them praying, sending encouraging words in cards, and gifts. Ella’s journey has not been an easy one and certainly not typical, but God is so good all the time and Ella has been VERY worth it all!



* This Run is to help Baby Ella’s parents with the financial hardship of complicated heart surgeries and other medical bills, not to mention the living expenses and future surgeries that Ella may have.

You can follow Ella's Journey @

www.elladawn.blogspot.com
Details for the race will also be posted on the blog and on facebook!
Thank you friends & family who have been praying for the Burk's, we have and will continue to see God work in Ella's life!

What is it about the coming of fall make me beyond thankful?!?

As I laid Lyric in her crib last night I was in awe at the handy work of our Creator! He made her just for us, with parts of each of us. She has her daddy's eyes, nose, and webbed toes... my legs, feet, and smile! I love that I can look down at her and see in her the man I love so much. Last night I watched as she slept, I then went and climbed into my own bed only to look over and see Trav sleeping just like her! They both had their hand in a fist right under their cheek. At that moment I was filled with gratitude to the one who gave them both to me. God knew what He was doing when He blessed me with Travis. This is a man who provides, protects, is faithful, loyal, loving and who will never leave my side even when life seems unbearable. God then blessed me with Lyric... the best gift ever in all the world!! She wakes up every morning with a smile and you can't help but to wake up happy even if it is 4:00am. I feel so blessed to her Mommy!

God is faithful!
This is what stayed in my mind while trying to conceive Lyric. Even though we went through the loss of two beautiful babies GOD WAS FAITHFUL! I remember finding the verses that I would claim and thanking Him for His promises!

We lost our 1st baby on 11/11/08. I had no idea where to begin searching for answers and reassurance that God remembered me. So I searched through the Bible looking up every 11:11 passage. It may seem silly but I know God had directed my steps so that I would find this beautiful passage:

By faith Sarah herself also received strength to conceive seed, and she bore a child when she was past the age, because she judged Him faithful who had promised.
Hebrews 11:11

This verse wasn't like my circumstances but I knew that Sarah judged him faithful and so would I. I also claimed a verse in 1 Samuel knowing Hannah had felt forgotten by God and even though her heart was heavy and she felt hopeless... God blessed her with a son! Here is what she said with a thankful heart:

And Hannah prayed and said:
“My heart rejoices in the LORD;
My horn is exalted in the LORD.
I smile at my enemies, Because I rejoice in Your salvation.
No one is holy like the LORD,
For there is none besides You, Nor is there any rock like our God."
1 Samuel 2:1-2

We may not always understand God's timing but I know that in His perfect time we will be blessed with exactly what we need. I am thankful as I look back now that I can see the hand of God at work in our lives, preparing us for His perfect will! Teaching us patience, teaching us to rely on Him, teaching us to rely on each other, teaching us that all we have is His, teaching us grace to get through those hard times, teaching us a love for one another that Lyric can see, teaching us that He has our lives all planned out and we have the honor as His children to trust Him.
Thank you Lord for the changing of the seasons in our lives.

The pressure makes us stronger, the struggle makes us hunger
The hard lessons make the difference and the difference makes it worth it.
Fireflight - For Those Who Wait