Surgery has Begun

Ella’s surgery is currently in process. The doctors said she should be out by early afternoon. They also gave an encouraging reporting that Ella’s lungs look better today than they have ever looked! Praise the Lord! We will continue to update as we get news. Please keep praying!

Surgery Tomorrow at 7:30am

Ella’s surgery is scheduled for tomorrow morning at 7:30. The surgery will last at least six hours and the hours following the surgery will be crucial. Please pray for Ella and each of the medical personnel working on Ella tomorrow. She has been a fighter from the beginning and tomorrow she will have to fight again. Pray for her body to respond and recover well to the surgery. Thank you all for your prayers and support. We are so grateful!
Lord, thank you for Ella’s life. Please continue to put your healing hands on her. Work through the medical staff at Dallas Children’s Hospital. Guide each surgeon’s hands. Give them wisdom beyond their training. We trust Your plan Father. Amen.

Treasure Each Moment

Each moment with Ella is so deeply treasured by Amy and Jon. Ella seems so perfect that at times it is hard to truly comprehend the complexity of her heart condition. Without fail, each discussion with the doctors brings back the stark reality of the long road ahead. Please don’t quit praying. Ella still has a long ways to go.


It was decided yesterday that Ella’s first open heart surgery will take place on Monday. We don’t have an exact time yet. Right after she was born the surgery was on her heart but was able to take place laparoscopically through an entry in her leg. This time they will actually open up her chest. Visitors will not be able to see Ella for many days possibly weeks after this surgery. The risk of infection will be substantially higher than it even is now. Amy and Jon will be able to still be with her though. With Jon not getting much sleep at night they are taking shifts which only leaves one of them in the room with Ella many times. Therefore they will not be able to meet any visitors unless previously arranged.

The doctors said that even with Ella’s first condition fixed her chances of survival do not raise any. The damage caused by that condition is still and will remain present. Her struggle overcoming the following surgeries will be greater than that of a child who only had one of the conditions. I’m glad our God doesn’t work off of statistics, aren’t you? The doctors said when Ella was born she wasn’t as in bad of a condition as he has seen some. Obviously, that still isn’t good but we will take every little bit of better we can. Amy and Jon were again reminded of the marathon they have ahead. Marathon is even to simple of a word for it, the doctors told them yesterday.
So they will continue cherishing the moments, and trusting the Lord for His best plan. Please continue the prayers!
If you would like to send a word of encouragement to them they would love to receive it. Their address at the Ronald McDonald House is:

Amy and Jon Burk
c/o Ronald McDonald House
4707 Bengal Street
Dallas, Texas 75235

Ups and Downs

As the days continue on they are filled with ups and downs for little Ella’s body. This was and is to be expected. We have some specific ways that you can be praying for Ella right now.

1.)Ella has quite a bit of fluid on her lungs. They are taking steps to remove at least enough of it so they can complete her next procedure. Please pray for the removal of the fluid.
2.)Peace for Ella. She is doing a little better today but had been rather anxious and stirring around yesterday. Her heart doesn’t handle that very well.
3.)Please pray for wisdom for Doctor Forbus. He is Ella’s surgeon and is making the final decisions on the next steps to take for Ella.
4.)This next procedure (still have NOT made a final decision on when it is happening, could possibly be as early as Saturday) will take another large team of doctors and nurses. Please pray for the exact people that are needed to be a part of Ella’s surgery to be available. It takes a great deal of scheduling for each team member to all come together. Pray for the Lord to orchestrate that perfectly.

Amy and Jon are holding up ok. Jon is not getting much sleep at nights because Ella settles down best when her Mommy or Daddy are touching her and talking to her. He stays by her side most of the night. He is trying to get naps during the day. Amy is still recovering well. Please pray for that procces to continue on a quick path for her.

Jon got to hold Ella for the first time yesterday evening. What an awesome time! Ella opened up her eyes and just intently looked and both her Mommy and Daddy for the longest time. What a special gift!

Thank you all for sharing in this time with our family. We know so many of you are praying for our family and precious Ella Dawn. Many people who have never even met us. Many people who have walked this very path or something similar. We don’t take those prayers for granted. Please keep lifting us up as the Lord brings our family to your mind.

With heart felt gratefulness

For Amy and Jon,

Aunt Rachael

What an incredible gift! Yesterday at about 1:45pm two days after bringing the baby she had worked so hard for into this world Amy was given her first opportunity to hold sweet Ella Dawn. What an amazing gift! But the blessings didn’t stop there. We had called on the services of a non-profit organization called ‘The American Child Photographers Charity Guild’. According to their website they provide “for parents experiencing a critically ill, extremely premature newborn or early infant loss at any stage we offering you heirloom memories of your precious baby.” Let me just testify that is exactly what they do! We had contacted a photographer in Dallas named Jennifer with Sugar photography. She was always so quick to respond to my emails or texts and she was there for this special moment mommy daughter moment. Here are a few pictures from the photo shoot.







Jennifer, words cannot express what an incredible gift you have given our family. Thank you so much for your work with ACPCG. We are so very grateful for each memory! May you be blessed beyond what we could ever give back to you for your generosity!

If you are in the Dallas area and need your kiddos photos taken I highly recommend Sugar photography!

A Word From Ella

I got to see Ella briefly for a few minutes this evening. It was wonderful and I am obligated to report what she told me. - Aunt Rachael

Dear Mommy and Daddy,
It must have been scary to hear that my heart didn’t work right. Mommy, you had already worked so hard and had been so sick. When the doctors talked to you about what you could do he gave you the chance to end my life and stop your pain but you said no. You wouldn’t even consider that option. You wanted to give me every chance I had. Thank you for giving me a chance to live.

I wanted to do my part so I fought hard. I wanted you to know I was doing my best so I would wiggle lots and lots to tell you that I love you. When I was scared I could hear both of the people I loved most singing and praying over me. You told me that you love me. Thank you for giving me a chance to hear you love.

It was so exciting to be able to come into your world and feel you touch me. I love Daddy’s kisses. Thank you for allowing me the chance to feel your love.

Mommy, I hear you say I have a cute button nose. Ten little fingers grace my hands allowing me to wrap up your big finger. I like to hear the excitement in your voice when I open my little eyes at you. Thank you for giving me the chance to love you back.

I don’t know what tomorrow holds or how long I will be here with you. But I know we can make it through whatever the days ahead hold. Please keep singing to me, praying over me, telling me you love me and letting me love you back. Thank you for letting me be a part of your family, for not taking the easy way out and giving me a chance. A chance at life.

I love you Mommy! I love you Daddy! God knew we needed each other!

Your Little Sunshine,
Ella Dawn

Beautiful Baby Girl

Ella Dawn Burk getting loving from Daddy!

Night one is done and things are still looking good. Little Ella is so beautiful and doing as well as can be expected. Despite the tubes she seems to be resting well. They are keeping her slightly sedated to allow her body to rest as much as possible. The first heart condition Ella had was resolved with yesterdays surgery. They will now start the three procedures to fix her second condition. The first surgery should be done within the next week. We will keep you posted. The following two procedures will be done at a later time. Ella has great color and was even sucking her finger really hard yesterday. The medical staff says these are all great things to see with heart babies.


Amy is already a great mom! She is pumping so Ella will have the best nutrition possible. Amy is feeling, well, like she just had a c-section. :) Although she is very sore she is taking the nessecary steps of recovery. This morning she was able to go see Ella. They cannot hold her yet becasue of the ventilator but her crib is open so they can touch her and give her lots of kisses. Amy and Jon have been sleeping with recieving blankets over the past couple weeks. Now Ella has them in her crib with her so she will recognize their smell. Amy and Jon sing to her and give her lots of love.


Thank you all for your many, many prayers. We all know this journey has just begun but it feels so good to be done with procedure number one and to be able to see this precious baby that we have waited so long to meet!

For Amy and Jon,
Aunt Rachael

Praise the Lord!

We never recieved official word of when Ella's surgery started. She went to OR right away but last we heard the doctors where talking about the best approach. However, I just recieved word that Ella's surgery is complete! The doctors are very happy with the outcome. There were a few things that were a bit more complitacted than planned but it all went well and they did not experience any of the major complications that can sometimes come with these surgeries. Ella is doing well. Oh, my goodness I love her!!! Thank you Jesus for all you have done today! Please continue to be with Ella throughout the night!
She will continue to be closely moniotored throughout the night.

Amy is hurting pretty badly. She so badly wants to see Ella. She is trying to find the balance between taking enough medication not to be in intense pain but also not taking too much to make her recovery time to seeing Ella delayed. Please pray for her.

Thank you all for your prayers today. Take a minute to thank the Lord for what he has done and keeping praying!

For Amy and Jon,
Aunt Rachael

Ella's is still stable and is holding her own. She has been a fighter from the beginning.

Ella's first surgery has not begun yet. This is a good thing; the doctor's are not rushed and they are able to be thorough and examine every detail before they begin. We are doing our due diligence and trusting God for His best.

Here is a picture of sweet baby Ella! Please keep this precious baby girl in your prayers.

Amy is resting and recovering well. Jon is at Children's Hospital with Ella. More updates will be posted as we receive new information.

Ella is Here!

Ella is here! She was born at 3:23pm and weighed 7lbs. 4 oz. and 19 3/4 inches long. The family waited in a room just of the main hallway for several minutes as a team of more than 20 doctors worked to stabalize Ella and Amy and prepare Ella for her first surgery.

Around 3:55pm we saw a short glimps of baby Ella as the medical staff rushed her down the hallway. Ella has already been through so much, but her journey is just beginning. Please continue to pray!

We just heard from one of the RN's who said that Amy is doing well. They asked us to give them 30 minutes before we try to go see Amy. For now, we know that Mom (Amy) did great. We saw Dad (Jon) walk by with Ella giving her his full attention. He is a great dad already.

We won't have an update on Ella's progress for quite a while. Please check the blog often. We will post as soon as we have any new information.

Most importantly, pray.

C-section still in waiting. Current news is they are waiting until 2:30ish. They are trying to make sure all the doctors they may need are available. There is a HUGE team, actually teams, in place for this. Amy and Jon are holding up well. As it gets close there is emotion but overall they are doing really well. Please just keep praying. Ella is coming in God's perfect timing.

For Amy and Jon,
Aunt Rachael

Temporarliy Postponed

The day has finally arrived! With the best staff on stand by so many details to be covered one small detail has been missed. Nobody informed Amy that she couldn't eat this morning. Yes, you read that right. :) Due to this tiny detail Amy had a few small bites this morning in order to keep herself from getting sick. Unfortunantly they are postponing the C-section due to the risk of her getting sick. Obviously this has been a bit frustrating for Amy feeling like she was doing something to keep her from getting sick and now the concern is her getting sick! It doesn't matter though and as the anisthesiologist told Amy this morning "rules are rules".

The good news is they are still planning on welcoming Ella into our world today. The new plan is to start prepping her for surgery at 1:00pm and start the procedure at 2:00pm. That is, of course, if Amy doesn't eat anything between now and then! :)

Just keep praying! We know that all things work together for good! God is in control!

For Amy and Jon,
Aunt Rachael

update 8-7-10

Well the big day has just about arrived and I wanted to put together some information for people who will be anxiously waiting to hear updates that day. First of all due to the delicate situation we are asking for no visitors until Ella is stable and we have more information on her condition. Since the Doctors expect our stay to be at a minimum of a month after her birth,their will be lots of opportunities for guests if her health allows. We know so many of you are praying diligently for Ella and will be ready to hear of news, we will try to get the blog updated as soon as possible, but under the circumstances we ask that you be patient with us. I have asked Ashley Farmer to be a contact for our friends at IBC and she has graciously agreed to take phone calls from those who are wondering the latest news. As far as Jon and I, we will NOT have our phones, also we do NOT have unlimited texting so please don't text us since we would not receive them and I am sure we would reach our limit rather quickly ;) We appreciate your prayers and concern so much, we just cannot possibly be in touch with everyone. There will be a small amount of family that will be in Dallas and they will try to spread the word when they hear anything new. I want to ask that anyone that wants to pass on news of Ella's condition make sure that the news is factual. In her condition there is a great possibility of many up and down moments, and we don't want any news to be spread that isn't fact. Again Jon and I feel so humbled that so many of you are lifting up our family in prayer at this time. The c-section is scheduled for 9am Monday morning the 9th. Ella will immediately be examined to make a plan, and then they will most likely take her strait into her first surgery. We will try to have you all updated as soon as possible with any news that becomes available.

update 7-29-10

We made it to Dallas! We are all settled in at the Ronald McDonald House and waiting anxiously for Aug. 9th! We are so relieved to be here in case I go into labor early. We met with my new Doctor down here and we also met with the pediatric cardiologist that will be over seeing Ella's echo cardiogram after she is born, we also met the Dr. that will be doing the first procedure (opening the restrictive PFO) and we met the ICU nurse that will be personally caring for Ella. We have also taken a tour of the facility, we should be getting a call from the surgeon today, we have another appt. on the 3rd with my Doctor and a consolation with the surgeon on the 5th. Needless to say it has been busy!!! This time is so difficult, we are 10 days away from little miss Ella entering the world and that FREAKS ME OUT! But I am so ready to meet this sweet baby girl that makes me laugh so much! After all the appt. we have had since being here everything is still on track. She has not improved but she has not gotten worse either! The plan is still to deliver her via c-section the morning of Aug. 9th. At that time every day is a guessing game. If all goes according to plan she will have the first procedure immediately and than 2 to 7 days later her first open heart procedure, followed by about three to four weeks in the hospital to recover. That is the plan but there are so so so so many variations to the plan because every baby is so different and they don't know her exact condition until she is born. One of our biggest prayer requests at this time is for her lungs to develop properly, there is no reason to believe that they have any problems; however, the doctors informed us that proper development of her lungs often times can be the difference of life and death in these babies. After every appt. I am reminded of the severity of her condition and it is scary, but it's at those times of fear that I am also reminded of God's power and how trusting in Him and walking by faith blindly, hard though it may be, is the ONLY way to get through this season. Leaving home was emotional for us, knowing that when we come home, one way or another, our lives will forever be changed. This is never how I imagined life would be, married almost three years to someone incredible, almost 22 years old, getting to have a sweet baby girl,... than surprise the whole world flips upside down and leaves you gasping for air. I have always known we are to trust God with everything and each day is a gift. But knowing and living that truth are two very different things. I find myself thanking God every morning for the gift of Ella for at least one more day, not knowing what tomorrow holds for her, never in my life have I ever daily thanked the Lord for life in its self. I am just coming to the realization that for the rest of the days that God allows me to spend with Ella, her life will be a gift. She will never be "fixed" they can't fix her heart they can only try to make it work the best they know how. She will forever be at risk of having a stroke or her heart giving out because it has to work too hard. I could lose her at any time for the rest of her life and that is a future that without God would be impossible. I know nobody is promised tomorrow, but I think we take life for granted too often. I have given baby Ella to the Lord several times, but somehow in my moments of weakness I seem to want to take her back as if some how I think I could take better care of her. Than I realize how foolish that is and I give her back... I think I will be learning that lesson for a while, God can take far better care of her than I can and she is His anyway!!! Why can't I get that in my head! One of the lessons I have learned by watching Jon through all of this is that even though it hurts and it is scary, if we just trust God's plan for our lives the anxiety is not near as great. We can not control what happens and we can not change what is going to happen so why worry about the future. Instead we should cherish the present! So that is what we are trying our very best to do (Jon is better at that than I am :) ) We are loving this baby girl and no matter the outcome we are so blessed to have had her in our lives! God is good all the time, that is where our hope lies. He can do a miracle!!!!!

update 7-7-10

Well we went down to Dallas yesterday to meet the pediatric cardiologist and the obstetrician. We also had an hour and a half long echo cardiogram. After the echo cardiogram we met with the cardiologist to discuss the plan. After Dr. Lemler had thoroughly examined her heart he told us that is a very good thing that we are planning on being in Dallas because her case is very severe. He told us that she does have hypo plastic left heart syndrome and the restricted PFO, which we had already been informed of this. He told us that her PFO was very restrictive and this was causing her pulmonary arteries to bulge, he said they are the worst he has ever seen. Then he said because of the bulging she may have unrepairable damage after she is born, in that case she would require a complete heart transplant. We will not know what the extent of the damage is until she is born. This was of course dis hearting to hear. Dallas has had about 7 to 10 of these cases but they couldn't give me statistics because they have no idea how the babies will do long term since being able to cure a baby with both conditions is so new. We are grateful that medical teams have made the progress that they have, because now we have some hope. After our appointment with the cardiologist, we met with the new obstetrician and had an ultrasound done just to check on everything else, she is one big baby :) she already weighs 5lbs. 9 oz.!! I am guessing at this rate she will be 9lbs. something when she is born, but that's just a guess! I am not looking forward to the massive amount of growing I will be doing over the course of the rest of this pregnancy. But on the up side, everyone got a big grin when they heard her weight and all the Doctors and nurses agreed and said the bigger the baby the better! Originally they were going to do a c-section at 37 weeks, but the doctors in Dallas agree that she needs to develop as close to full term as possible so that she only has one battle to fight, with that being said we have a c-section scheduled on Aug. 9th at that time I will be 39 weeks pregnant. However because of the high risk of my case Jon and I will be moving down to Dallas some time in the next three weeks and will remain there until we bring our sweet baby girl home. We are unsure how long our stay will be but it will most likely be two months if everything goes perfect, and it could be several months if there are complications. We are beyond grateful for everything that the Lord is doing through our friends and family, we are humbled by your prayers, love, and support. Even though this is the hardest thing we have ever had to endure God is leading our every step. I am so happy to report that everyone of the staff members that we met in Dallas from the Secretaries to the Doctors were so supportive and helpful. This was a blessing to us because we have a team of doctors here already so switching all our doctors was intimidating to me to say the least. I have one more appointment with the perinatal specialist here and one more appointment with my obstetrician before we move to Dallas. July 27th will be my next appointment in Dallas and than sometime between then and Aug. 9th Jon and I will meet with the surgeon and take a tour of the facility where Ella will be cared for. We know that Ella is in the Lord's hands, but for me right now it's a constant state of fear and emotion. Being in Dallas made it all seem more real somehow, more severe. Having so many doctors and specialist all telling me "this is bad", and "this will be the hardest thing you will ever go through in your life". Knowing that Jon or I won't be able to hold her makes my heart sad especially since they don't expect her to make it though the first surgery. It's one of those things that if there was no chance I would just hold her until her last breath, but knowing there is a chance I can't take that away from her, but after everything that has happened I just want to hold her in my arms and look into those eyes and have her look back at me. I want her to know that I love her and that I am there with her. Over the course of this pregnancy their have been many trials and so much pain both physically and emotionally, but I can't help but think about if she doesn't make it, and the pain I have felt for so long now will only be the beginning of the most pain I have ever felt and that pain will last for the rest of my life. I realize I'm not the only one to ever lose a child or even to lose someone prematurely, but right now the future seems unbearable. I am trying to have hope but when everything around you says it's not likely fear seems to somehow grab hold and hang on for dear life. Please pray that Jon and I will remain strong through this time, that in the next 5 weeks we would be able to cherish every second with our baby girl, that my sickness would subside, that we will have a peace that surpasses all understanding, that God would heal Ella's heart completely, that she would not need a complete heart transplant, that she would live to be the light that we know she will be. We love you all so dearly and we covet your prayers. May you know Christ's love in your own lives!

update 6-21-10

Well we went to see Ella's cardiologist today. Everything looks about the same on the ultrasound with her heart. This is good news that things are the same and not getting worse! We will be delivering Ella down in Dallas, and we will remain their until her first surgery/surgeries are completed and she is ready to go home. We will be traveling down to Dallas on July 6th to meet the team that will be working with us and caring for Ella, at that time we will set the date for her delivery. This is a huge relief for Jon and I to finally know where we will be. Please continue to pray for Ella's heart, as this is one of the hardest conditions that there is to take care of. Also please pray for all the doctors and surgeons that will be working on her. I am 32 weeks along and Ella is weighing in at 4lbs. 5oz.!!! She is a growing girl, this is a great sign! At the first of the appointment Ella was face down so they couldn't see her face or her heart very well, they kept pushing on her and she would wiggle all around but she would not turn over. When the first nurse left the room, I told Jon that he should try to tell her to turn over so he leaned over my stomach and talked to her for a little bit and told her to turn over, when the next nurse came in to look at her heart she was in the perfect position!!! She loves her daddy! Thank you all for your continued prayers, they are so appreciated!

update 6-2-10

Well we had our doctor appointment today, thank you to everyone that was praying! I guess I'll get strait to the report. They said that everything looks about the same, but that their was a small improvement in her PFO! It doesn't change anything really statistics wise but the tendency is for the hole to close and hers has ever so slightly widened! At our last visit the opening was 1.7mm to 2mm this time it was 2mm to 3mm, although this is a very very small improvement it gives us hope that it could be the beginning of even more improvement! So I believe our earnest prayers are being heard, please continue to pray for her healing! We still do not know where we will be delivering or when exactly, hopefully we will know in two weeks. Although she is still at significant risk, we are praising the Lord for a small glimpse of hope for her. We were also encouraged that she is continuing to grow exactly on schedule she weighs 3lbs 2oz. She also is getting good blood flow to her brain and all the other major organs despite the obstacles in her heart! The doctor today seemed somewhat optimistic especially since she isn't getting worse! He said "she's doing pretty darn good!" With a smile on his face. We know this is still a long shot and we know that she is not even close to being out of the woods, but we also are rejoicing in this small victory! Her HLHS is still just as severe and the PFO needs to continue to open about 2 more mm in order to not have to do the extra surgery. We desperately want to hold our baby girl before they have to take her to surgery, as of now, we won't get to hold her :( If the PFO continues to open to the appropriate width, we may get to hold her before her first surgery! The doctors don't think that will happen, I am praying that it does :) Thank you so much for your prayers we could not possibly put into words how much they mean to us. Please don't stop praying for Ella, she is strong, but without God's intervention she just doesn't have the greatest odds.