Thursday, September 30, 2010

Well, Ella has developed a cough. It is extremely mild and doesn't even sound congested, but the pediatrician suggested that I call the cardiologist just to make sure it was ok since sometimes a problem with your heart can make you cough. After talking to the cardiologist they said they wanted to see her tomorrow afternoon just to check everything out. We ask you to pray that this is nothing serious, we are just getting settled back in and going back to more meds or a hospital stay is not what we want. Ella is our sunshine, and hearing bad news would crush us. Hoping and praying for the best...

Tuesday, September 28, 2010

We took Ella in this morning to get her oxygen level checked and to get her weighed. All looked great! She weighs 9lbs. !!!! She is such a joy, Jon and I can't get enough of her. We just stare at her and smile, and then brag about how cute she is :) We are just taking it one day at a time until her next surgery, and in the mean time enjoying lots and lots of snuggle time! :)

Saturday, September 25, 2010

As I was in our room this evening getting things ready for church in the morning, I realized that our calender on the wall was still on July... We were away from home for quite some time! Our calender is made with quotes from the book "The Purpose Driven Life" I am always encouraged by the quotes each month. As I began to turn the calender to September, I saw the date Aug. 17th and on it I had written "due date" wow I thought to myself, who knew when I wrote that down how different things would be then we had expected. I decided to read the quote for Aug. (Ella's birth month) It said "Trusting God completely means having faith that He knows what is best for your life. You expect Him to keep His promises, help you with problems, and do the impossible when necessary." Wow so true and appropriate for all of life but especially for Aug.! Then I continued on to read the quote for this month, it read " Our hope in difficult times is not based on positive thinking, wishful thinking, or natural optimism. It is certainty based on the truths that God is in complete control of our universe and He loves us." Again I was blown away by the truth in these words. I got so excited I took the calender of the wall brought it to the living room where I read it to Jon, then with a smile I said, "that is worthy of a blog! :)" I just had to share these great quotes! God is so good to encourage me when I am feeling low, and He always reminds me what is really important! I pray you all find a place to worship our gracious Heavenly Father this Sunday!

Thursday, September 23, 2010

Update on Ella Dawn!

First off I want to just say a VERY SPECIAL THANK YOU to my sister Rachael, who has so diligently been keeping up with Ella's blog for me! Rachael you will never know how much this has meant to me, knowing that Ella's story has been shared with so many truly makes this journey easier to walk! You have done an AMAZING job! I love you!

Well Ella is adjusting very well to home! Jon and I are beyond thrilled to be back! We took Ella to see her cardiologist here in okc, and he said she is doing GREAT!!! We continue to hear time after time from doctors how phenomenal she is doing... it never gets old! We also took Ella to see her pediatrician and again She had all good things to say about little miss Ella! Ella is now 8lbs.12oz.!!!! She is growing so fast it makes me kinda sad, but it is actually a VERY good sign! Heart babies tend to be on the small side because their heart has to work twice as hard and they burn more calories. Ella has had an EKG and X-Ray since she has been home, and they both looked great! We have to get her oxygen level checked twice a week at the doctors office, and we see her cardiologist once every two weeks. We continue to be encouraged by all of your prayers! For all of you that are wondering what things look like for us from here, this is the plan. For the next three to six months or so our job is to keep Ella healthy and get her as big as possible. Her next open heart surgery will be around Christmas or new years (we think) Until then Ella is in a crucial position. There is a 10% mortality rate between the surgeries she already had and the next one, most of the deaths occur when a baby gets sick. So the doctors gave us strict instructions to "guard" her very carefully, they want her to stay away from children (because you never know when they are sick) and they don't want anyone touching her or breathing on her that are sick or have been around anyone sick. They also strongly encouraged us to limit others holding her. We realize so many of you want to see the miracle you have been praying for all this time; however, because of her being at such a high risk (especially this flu season) small peeks for short times is the best we can do for now. Hopfully after her second surgery we will be able to share her more with you all! After her next surgery we will have her here at home for three to five years and then we will take her back to Dallas for her last surgery! Ella still has quite the road to travel, but we know that God will be in control every step of the way! We continue to ask for your prayers for Ella, as she still has so much to endure! We can not thank you enough for the prayers and gifts you all have already blessed us with!

please continue to pray for and follow our friend's baby Emma, she will be going down the same path as our Ella! Also please pray for our friends Summer and Travis, their baby girl is one month older than Ella, they just found out that she will need surgery on her heart as well. Although the diagnosis isn't as "serious" it feels the same to a parent's heart! Thank you all so much.

Saturday, September 18, 2010

Sweet Ella continues to do very well at home. She is getting to meet all of her doctors here at home. Right now the prayer requests are for Ella to have a strong immune system so she can fight off any possible illnesses and for her to have no unexpected lapses with her heart condition.

Queen Ella sleeping in her royal crib :)

Thank you all for your prayers!

Tuesday, September 14, 2010

Welcome Home Ella Dawn...Welcome Home!

Ephesians 3:20
"Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen."

On the journey home Amy and Jon took this photo. How appropriate and beautiful- a reminder of God’s promise. Thank you Lord!
These are the words to a song that has touched my heart through all of the difficulties of this past year.

Thank You:

For all that You’ve done I will thank You
For all that You’re going to do
For all that You’ve promised and all that you are
Is all that has carried me through
Jesus I thank You!

Thank You for loving and setting my free!
Thank You for giving Your life just for me.
How I thank You! Jesus I thank You!
Gratefully thank You! Thank You!

Amy and Jon are so happy to be home. They wish they could share Ella with everyone but the doctors continue to give them very strong cautions about allowing people to come over or bringing Ella anywhere. Even aunts and uncles are on standby for when we can see sweet Ella. Even though it is hard we are more than willing to do whatever is best for Ella. Just having her here is such a blessing! 
You all will never know how much each prayer has meant to us. This journey has forever left us changed and we continue the prayers for those walking similar journeys of their own.

For Amy and Jon,
Aunt Rachael

P.S. If you haven't signed up for the "Worth it All" Benefit Run yet you can print the registration form at the top of the right hand column of this page. We would love for you to come help us celebrate miracles!

Monday, September 13, 2010

Have you smiled about something yet today?

Friday, September 10, 2010

Two Very Happy People Leaving the Hospital WITH Their Baby!!!

Look who is no longer in the hospital!!!! Our God is still in the miracle working business!!! Praise His Holy name!!!!

The Burk family was released to go to the Ronald McDonald house for a trial “at home” run. On Monday Ella has a doctors appointment at which time they will make further decisions about them returning to Oklahoma. We are so excited about the possibility about the family coming home but we know there are going to be many many new things to learn along this new part of the journey. There is a 10% mortality rate of these heart babies between the first and second surgeries who get a secondary illness and their bodies can’t fight back. Regardless of the new restrictions that will be in place for Ella’s safety we are so grateful to even have her on this journey.

Many of you have been patiently waiting for details about the fundraiser walk/run for Amy, Jon and Ella. So here is the scoop:

“Worth it All” Beneļ¬t Run for Ella Dawn Burk
daughter of Jon and Amy Burk of Immanuel Baptist Church
October 10th, 2010 at Shawnee Airport Track
1 mile/5k/10k Run/Walk your choice, all ages welcome
1:00 pm Registration, 2:00 pm start
$20.00 Registration (includes t-shirt)

I’m sure many of you have spirits that are willing but your flesh is weak. I understand your plight. Come support us by just being there cheering on those who are running. It is for the whole family and is going to be lots of fun! Look into that cute face, into those adorable eyes. Ok, now make your decision. :)
So are you going to join in the walk/run? Great! Click HERE to fill out the registration form and send it in. You can also just purchase a t-shirt through filling out the registration page as if you were running but on bottom of the form write "shirt only" so we will be able to keep a count of how many runners we will have on the track.

Thank you again for all of your continued love, prayers, and support!

For Amy and Jon,
Aunt Rachael

Tuesday, September 7, 2010

Prayer is so amazing! Post by Jon (Ella's Daddy)

Prayer is so amazing! I know that we would have never gotten this far if we hadn’t had the prayer support that we received, and for that we’ll always be grateful. So, thank you all for the prayers! This has been an amazing journey, that has not just strengthened us in our faith, and in our prayer lives, but has strengthened and impacted so many others lives as well. I can tell you countless times individual people have contacted us and said, “Our prayer lives have never been this strong before”, and “This has strengthened my personal walk with Christ and my faith in Him”. This alone would make it all worthwhile, but on top of this we were blessed with a beautiful little girl named Ella. Wow, God really does make ALL things work together for good for those who love Him. It’s not just about us or what we think is best, it’s more about God’s bigger plan that He has in store for us, and trust me His plan is always the best, even if we don’t get to see it in this life.

So the real reason I’m writing all of this is for another little girl God has put in our path, so let me catch you up.

If you remember Ella’s first open heart surgery things didn’t go according to the doctors original plan; they ended up doing something they had never done before, and much to their surprise it ended up better than if it had gone ahead with their original plans. I know that God was listening to everyone’s prayers, so again thank you! A day or two after Ella’s first surgery, Amy and I were with her in her room when two case workers that have been working with us from the beginning stopped in to see her and handed us an envelope that someone had given them to give to us. Upon opening it we read the card out loud. It was from a young couple that loves the Lord and is expecting their first baby, and someone had given them Ella’s blog address. This is where it gets really interesting. They are having a little baby girl with HLHS which just to remind you the chance of having a baby with HLHS is 4 in 10,000 and the odds of that baby being a girl, vs. being a boy, is around 1 in 4, so that means having a girl with HLHS is now 1 in 10,000, as rare as this is, the success rate is really fairly high. But that’s not all, if you remember HLHS is just one of Ella’s conditions; she was also diagnosed with a restrictive PFO or restrictive atrial septum, this causes the success rate to drop drastically. Now the chance of an HLHS baby having a restrictive PFO is a 5% chance. So the chance of Amy and I having Ella is 1 in 200,000 or a 0.0005% chance, and you guessed it, their baby has almost the very same thing. They also live in Oklahoma just 45 minutes from us, and they also, like us, will be going down to Dallas for their delivery and surgeries in a week or two. My favorite part is that they’re naming their precious little baby girl Emma. I’m looking forward to someday when Ella and Emma can meet! I know that God has had His hand in all of this, and I also believe God has used Ella to pave a path for Emma and to give the doctors new ways to help save other babies with her condition.

So we continue to ask for prayer, because it really does work. But not just for us; I’m asking all of you now to be praying for Emma and her parents as they’re just starting their own personal roller coaster ride.

You can get updates and learn more about Emma (Ella’s little heart buddy) at…

Please check out this blog; we’d love to share our strong prayer support team with this family, that God has placed on our hearts.

Thank you ALL for your time, love and support; it means the world to us, -Jon (Amy and Ella)

Monday, September 6, 2010

Another Step in the Right Direction!

Apparently Ella is so excited about the newest improvements. And so are we!!!! She has continued to have more and more tubes and wires removed. Amy and Jon completed a CPR class and the staff has begun to educate them on how to give Ella’s medicine. Also they have been mixing formula with Amy’s milk because heart babies need more calories. Amy said she was a little disappointed with that because it felt like they were putting ranch dressing onto a previously healthy salad! She knows though that Ella needs Mommy’s milk too and continues to faithfully do a great job in providing it for her even if they do add formula.
Today they moved Ella out of the NICU and onto another floor. Praise the Lord! This is a huge step on the road towards home! Thank you for your continued prayers and support!

For Amy and Jon,
Aunt Rachael

Saturday, September 4, 2010

Heard this morning that they took Ella's oxygen off and she is doing great! Amy got to feed her bottles throughout the night. They are only giving her a 1/2 oz. at a time and she is tolerating it well. I will try to get pictures to post later.

For Amy and Jon,
Aunt Rachael

Thursday, September 2, 2010

A Picture...Worth a Thousand Words!




"Daddy, You are my hero!"

Worth it All!

Last night one of the doctors was in the room and she said to Amy and Jon, "I know you guys know how well she is doing, but I just want you to know she is doing phenomenal!" She also mentioned that she knows they are being extra cautious, they are just amazed at how well she is really doing! They don't have good explainations, but we do!! :) I am so grateful for what God is doing.

Someone sent Amy and Jon a love offering and wanted Jon to take Amy on a special date and buy her a special gift to remember this season in their lives. The necklace is the gift he chose. They also wanted them to buy Ella a special gift so they plan to buy her a music box.

Thank you for continuing to lift our family up! To God be the Glory! Great things He has done!!!

For Amy and Jon,
Aunt Rachael

P.S. The top picture captures a treasured moment. Amy's first time to feed Ella! I think they both enjoyed it! :)

Wednesday, September 1, 2010

A Great Report and Other Things

Let me start with another GREAT report about Ella. This morning they removed her heart lines as well as the stitches from her incision. She is doing well and the staff will just monitor her for a few hours before Amy and Jon can hold her. It has been nine days since they held her last. I know this picture was posted yesterday but I didn’t have a new one and it is just so cute I had to re-post it. :)

I had a couple of “house keeping” items to discuss if you don’t mind.
First of all, I would like to point out the “Email Subscription” option in the right hand column under Amy and Jon’s temporary mailing address. This is a safe option for you to receive updates by email. When you have added your address, you will receive one daily email update from our blog (if there are no new updates, you will not receive any emails). It is safe and backed by Google, and you can unsubscribe at any time. Please take note that it will only send you one daily email not an email with every update. So, if it is a day where there are going to be frequent posts (such as surgery days) you will want to go to the blog for the most immediate information and prayer requests.

Secondly, I have received several requests on the best way to give a monetary gift to Amy and Jon. There are three ways to go about this.
1.) Cashier’s Check or Money Order - If you would like to mail a cashier’s check or money order to them you may do so by using their temporary mailing address located in the right hand column. (They cannot cash any personal checks in Dallas.)
2.) Donate Electronically via Credit Card – Click on the “Donate” button in the right hand column. It will take you to a secure page. There is an option to “continue” towards the bottom of the page by the credit card logos. Enter in your information and follow the directions from there. (You do not have to have a PayPal account for this option.
3.) Donate Electronically via your PayPal Account – Click the “donate” button in the right hand column and follow the directions to login and give through PayPal.

Obviously Jon is not currently working right now. Jon works for himself remodeling old houses turning them into beautiful homes. He is very talented in his work! This is good news because he will still have a job when he gets home but it is also bad news because it means no insurance. Currently they have qualified for some assistance through the state but will most likely lose that before Ella’s surgeries are a done deal. We trust in the Lord’s provision and know that sometimes He chooses to meet our needs through other people. If the Lord has placed a burden on your heart to give in such a way these are the best ways to do it. Please don’t feel obligated to give. This is for those who have approached us on the subject matter and to give any others the opportunity to be a part should they be led to do so.

One other thing I am SOOOOO excited about and wanted to give you a heads up on is an upcoming walk/run fundraiser for Amy, Jon and Ella. Get your running shoes on and come join us! I will give you all the details as soon as they are all confirmed but this should be happening next month sometime. It is going to be a blast and such a huge blessing! Stay tuned for detail!

Have a great day!

Aunt Rachael