Tuesday, August 31, 2010

What a Cute Baby

I think those big beautiful eyes pretty much say it all but I will give you details anyways. :) The CPAP machine came off today and should stay off! Praise the Lord! Right now they just have Ella on oxygen. Today they had also planned on taking out some wires that run to Ella's heart, that were temporarily placed during the surgery, but have decided to wait another day. Amy and Jon were disappointed because the decision to leave the wires in another day also meant another day before they can hold their sweet little girl again. Each time they get to hold her it is such treasured moments! They are dipping Ella's passy in "Mommy's Milk" and she is loving it. :)

Thank you Lord for Blessings!

Monday, August 30, 2010

Joy comes in the Morning!

The morning Ella was born I was visiting with Amy. As you might recall we were blessed with some extra visiting time due to a miscommunication or rather a non-communication about the fact that Amy was not supposed to eat anything before the c-section resulting in an eight hour delay. If you missed the drama you can read all about it here. Anyways, during that time Amy was sharing with me how her and Jon had looked up some verses the night before about joy. One of the verses they really liked was the second part of Psalm 30:5 which says
“Weeping may endure for a night,
But joy comes in the morning.”

Daddy got this great big smile out of Sweet Ella. I hope it brings you a little bit of joy!
Ella’s lungs are looking great! Her CPAP is still on but they are slowly weaning her off of it. Poor baby gets cross eyed when looking at you because her eyes try to focus on the tube between her eyes.
We are so grateful for each prayer lifted on our behalf. God is good...all the time!

For Amy and Jon,
Aunt Rachael

Sunday, August 29, 2010

Ella continues to takes steps in the right direction. Praise the Lord they did not have to restart the ventilator. She is still doing well with the CPAP. It is an interesting contraption. Sometimes I wonder who comes up with these things. I am grateful for all of the interesting machines and procedures we have been introduced to over the last few weeks. Tubes continue to be removed and guess what!? Underneath all those tubes is a beautiful baby girl! We are still taking it one day at a time and continue to ask for the Lord’s healing hand to be on sweet Ella Dawn. Thank you for being a part of such a journey with us!

Psalm 34:8
Taste and see that the LORD is good;
blessed is the man who takes refuge in him.

First time since birth to breath without a ventilator.
Mommy and Daddy always right there by Ella's side!
Ella is a popular little girl!

Thank you all for your continued prayers and support!

For Amy and Jon,
Aunt Rachael

Friday, August 27, 2010

He Know Our Needs!

So many prayers have been lifted for the protection and safety of Ella. There were so many unknowns in the equation and sometimes we didn’t even know exactly how to pray. We prayed what was in our heart. I remember many prayers included asking the Lord to go before Amy and Jon in all ways. Directing their steps, guiding the doctors, and the list goes on. We have seen how the Lord has gone before us in many situations throughout the course of the last couple weeks but today I would be remiss if I didn’t share with you yet another testimony of God’s goodness.

Yesterday two doctors form OU medical center were arrested for being involved in prostitution. One of the doctors was a pediatric surgeon that specialized in congenital heart defects. This doctor would have certainly been involved in Ella’s care had Amy and Jon chosen to have Ella in Oklahoma City. Thank you Lord for directing our steps!

They took out another drainage tube and have also removed the vent. She was struggling a little bit but is still managing without it. They have her on a CPAP. I’m sure some of you out there know from experience what that is. For those of us who don’t basically it makes it easier for her to breathe on her own and they will slowly wean her off of it until she is completely on room air.

The doctor said the left lung looks great! Ella’s right lung is collapsed though. Right now they are turning her and taking steps so that can be corrected.

Matthew 6:8 …For your Father knows the things you have need of before you ask Him.

For Amy and Jon,
Aunt Rachael

Thursday, August 26, 2010

Good News All Around!

Twenty percent chance to live. Twenty percent (20%). That is all the statistics gave sweet Ella. Not worth the hassle, pain, money. Maybe there is just a 20% chance because not enough people are taking the chance. I realize there are many babies who do not survive HLHS. Ella may not survive HLHS. But has this been worth the chance? Absolutely. Worth the pain? Every second. What a blessing Sweet Ella is.
Today Ella has continued to do very well. They removed one drainage tube and she handled it very well. Tomorrow they will take out the only two remaining drainage tubes. They also plan to…are you ready for this?...drum roll please……..take out her ventilator! Praise the Lord. Please pray for her body to handle that procedure well and maintain on her own. (Side Note: I love all of the stuffed animals she has going on in this picture. :) )
They have started weaning her off of her pain medicine. They plan to continue doing that throughout the night and discontinue it all together by morning. This is the only pain medication she is on and unless she shows signs of being in pain, which they don’t anticipate, that will be a done deal. Again, Praise the Lord.

They have been giving Ella “Mommy’s Milk” through the feeding tube. Amy is doing such a great job providing nutrition for Ella. Medical staff also removed the bandage from Ella’s incision. It seems to be healing nicely without infection.

Reports are that today Ella has been very alert. Big eyes wide open observing her surrounding, moving her little feet and hands and even making sweet sounds and sticking out her tongue.

Ok, all together now- Awwwww; and now- HALLELUJAH!!!
Please continue to lift Ella up in prayer. We are so grateful for you interceding on our behalf and for all the blessings the Lord has allowed us to witnesses.

For Amy and Jon,
Aunt Rachael

Wednesday, August 25, 2010

Post by Amy... heart mom to Ella!!!

What a miracle, here I am sitting by my daughters bedside watching her sleep. Every once in a while she opens her eyes sleepily, looks to make sure I'm still here than back off to dream land she goes. As I take this journey I am amazed at all the things God has brought us through, He has truly walked with us through everything. I have learned how very powerful prayer is! I have experienced love from Friends, family, and even people I don't know at a whole new level. God is so good to show His love through others! Although this journey has been so long  it has only really just begun, somehow I am excited about the future even though at times it is overwhelming. This path God chose for us isn't what we would have chosen for ourselves, but we wouldn't give it up for anything in the world. Although this life will have many adjustments we didn't expect to make, this life will be filled with a deeper love, more cherished moments, stronger bonds, and most importantly a deeper trust in the one who gave us everything, My Jesus! Our sweet Ella Dawn has brought more joy than I ever thought possible, she truly is my sunshine, her eyes make my heart smile. One of the hardest things about all of this is the lack of contact with my baby, sometimes I don't feel like a mom at all, but when she looks in my eyes the feeling that sweeps over my body is indescribable... and I am sure, at that moment, I am her mom! Getting the chance to love someone this much is a wonderful experience, watching someone you love this much suffer is harder than you can imagine. Knowing that God is in control is sometimes the only thing I can cling to, even at her bedside I am completely helpless to do anything at all, and that is a heartbreaking helplessness unlike any other. I am so blessed beyond measure at the unfailing support of Jon, he is truly un-human at times, he somehow manages to be the perfect husband and the perfect daddy!!! Watching him with Ella brings tears to my eyes and I fall in love with him at a whole new level! Ella is already in love with her daddy, she searches the room for him when she hears him talking, and seeing my tiny baby in Jon's big strong arms somehow makes me feel safe. I just know that as long as Jon is here and able Ella and I will be taken care of! God knew what He was doing when He gave us Jon... us girls need our man! I can't wait to hold my sweet Ella again, I don't know how long it will be, but I know it won't be soon enough!!! Holding her for the first time was the most incredible thing in the whole entire world... wow what a blessing! I can't tell you the countless times I prayed through tears that I would have that moment, God is so good to give us blessings along the way! As I type this my eyes are filling with tears as I remember all the times I begged God to not make us walk this path, begging him through sobbing prayers in the night to heal my baby girl, feeling her wiggle inside as I prayed. Little did I know that walking this path, I have experienced His love for me in a whole new way, I have felt love and support that I never would have, and I cherish Ella so much more than I would have. Even though this is far more than I "bargained" for... I know God is good all the time. Ella is truly a blessing, she has touched the lives of so many, God has strengthened others prayer walks with Him through her life... that includes me!The night after Ella's third heart surgery our little baby took a very severe turn for the worse, as we set there helpless to change anything, the only thing to do was stare at her stats and wait. Jon and I began to pray, first separately then together. As we prayed in her room the doctors continued to try to figure someway to get her racing heartbeat under control and back in rhythm. When we said amen, not even a few minutes later the Doctor said "wait" "what just happened", her stats had stabilized, "we didn't do anything" all the nurses and doctors said wow that's great. Jon and I immediately turned to one another and exchanged a smile. We knew what had "just happened" God "happened"!!! It is at times like this when we are helpless and the news is bad that the former "me" would have fallen apart, not to say I didn't feel fear, but being able to put her in God's hands and see the results so quickly truly builds my faith like no other. I am constantly ready to see what God is going to do next in our lives! No this journey isn't easy and no it is not without fear and pain, but God is working in our lives and Ella is being so strong, we love her more than words. Dear Lord, thank you for Ella's life, thank you for all You have done this far. Thank you for all of the people that are praying so faithfully for our family, thank you for all of the blessings we have received. Thank you for providing for us. Please continue to work in our lives and in Ella's life, please make us who You want us to be. May You be honered and glorified by our words and actions. We thank You for all that You are going to do, we love You and we trust You, amen ~ Amy

Praise the Lord!

Amy and Jon are so glad to be able to be back at Ella’s side. Something I just found out today is that Amy and Jon have not been able to touch or talk to Ella since her surgery on Monday. The Doctors wanted Ella to have no stimulation whatsoever. So they have been in her room but feeling helpless all the while. So praise the Lord for this sweet reunion! I am sure they are all three immensely enjoying it!

Another praise report is that Ella is now off of the pace maker. Her heart rate is down to a good number and is beating correctly! Praise the Lord!

The doctor told Amy and Jon that “Everything went well and she is doing great. This little girl is a rock star!” All I know is that she and all of us are relying on Christ the Solid Rock. On Christ the Solid Rock I stand all other ground is sinking sand! He is faithful!

One of the ways they have been helping to slow Ella’s heart rate is through cooling her body temperature. They still have her cooler than normal and are starting to slowly recover her body temperature. Please pray her heart rate remains functioning correctly during that process.

Thank you all for your continued prayers and make sure you take a minute to praise the name of Jesus for all He has done! To God be the Glory!

For Amy and Jon,
Aunt Rachael
They have finished closing Ella's chest, and the doctor said it went well.  Amy & Jon should be able to see her in about 30 minutes.  Thank you for praying!

Tuesday, August 24, 2010

Seems to Have Turned the Corner

The past 24 hours have given even more opportunities to trust God at a deeper level. Ella is still on the pace maker. Her heart rate is still a bit high but seems to be managed. She is at a better place than she was last night. They are hopeful they will not have to use the machine. (ECMO, which some of you have apparently had encounters with.) Last night around midnight the doctor said he felt Ella had turned a corner and was hopeful they could maintain without further intervention. Doctors still plan on closing up the incision in Ella’s chest tomorrow.

Last night during some of the scariest moments Amy and Jon were praying together. The doctor asked if he could pray with them. What a blessing.

There are still moments little Ella appears to be in pain. Please continue to pray for her peace and comfort.

Amy is feeling better. She went to the doctor today for one of her follow up appointments and she went ahead and got a z-pack in an effort to get ahead of anything that might be trying to come on.

Someone sent me a testimony of a family that had a child with HLHS. Something that was said during the video has rung in my ears many times since I viewed it. “If we can trust God with our eternity then we can trust Him with our now.” What a great statement. We CAN trust Him with our now. He cares. He is and wants to be involved. Why wouldn’t I trust Him? Why wouldn’t you trust Him? Have you trusted Him with your eternity but tried to keep the concerns and worries of the moment to yourself? Give your everything to Jesus. Let Him help bear your pain. Let Him rejoice with you. He understands. HE IS FAITHFUL…even in the storms. So as I pray for baby Ella and so many other families hurting with their own painful situations my heart is most heavy for those who have no hope. A fate far worse than any imaginable tragedy or hardship. If you don’t know Jesus as your Lord and savior, if you haven’t trusted Him with your now and your future, if you feel hopeless…run to Jesus. He is waiting for you with open arms.

Aunt Rachael

Morning Update

Last night had a lot of scary moments! Things are still not peachy keen but Ella has avoided the machine at least for now. About 11:30pm the doctor said they were at a crossroads. They had to take a path, even if it was the one they didn’t want. They tried the pace maker one more time even though her heart rate was still a bit high for it. Her rate had dropped from 200 down to 175. This morning her heart rate was still high, about 165, and she is still on the pacemaker. So we are still on the “ok” path. Ella has started to show signs of being in pain but they cannot give her any pain medication because of her heart. Please pray for her little body to be at peace and have the ability to rest pain free. I’m not exactly sure what all the doctors are looking for today. I do know her heart rate still needs to slow a bit.

I am sorry I don’t know details about this machine I keep referring to. All I know is the doctors only wanted it as a very very very last resort. As I understand it, there are dangers in putting her on it and even more dangers taking her off of it. Sometimes patients don’t ever come off of it. Seems in some ways to be a type of life support. If we have to use it I will get more details about it. Let’s keep praying that doesn’t happen!

Thank you for your continued prayers. Please keeping lifting Ella and family up as the Lord brings them to mind.
Specific Prayer Requests:
1.) Ella's pain to be gone
2.) Ella's heart rate to return to normal range with correct beating patterns

Keep the prayers coming.....

At this time, Ella's heart rate is being controlled by the pacemaker. The doctors, after 5 rounds of medicine, and a few attempts with the pacemaker, were able to make it work, for now....right now things are very "touch & go".  They were having problems with the pacemaker and were finally able to get it stabilized at 165.  It still de-stabilizes at times. These next several hours are very, very crucial.  Even more so than during the surgery itself.  Please continue to pray for the doctors to have wisdom, and for Ella's heart rate to be steady and regular.  We will update with changes as they come.

For Jon & Amy,
Aunt Kristina

Monday, August 23, 2010

Please Pray Now!!!!

Just got a message that Ella's heart rate is beating too fast. It is also beating incorrectly. They can fix this with a pace maker but her heart needs to slow down to at least 170 first. They have tried everything they can and now are giving her the last round of medications they can. If that does not work they will  have to put her on a machine that is very hard on the body and is difficult to come off of. Please pray specifically that way!

The doctors just asked to pray with Amy and Jon.
Lord, may your peace wash over that place! Amen!
Just heard Ella has started with that downturn they normally expect within the first 12 hours. Lots of doctors and nurses working. They are keeping in touch with the surgeon and doing the things they can. Please keep praying!

Ending the Day

Things are coming to a close for the day. Ella is back and her room and being taken good care of. Now through 24 hours after they close her chest up will be a crucial time. She is doing as well as they might have expected and so far has had no unpleasant surprises. They say 12 hours after the surgery often times the babies will have a little dip in recovery. Sometimes it is no big deal, others more serious. Please keep her in your prayers! They should be closing her up within a day or so. Right now she is still pretty much sedated. They surgeons were so very happy with the way things turned out! Even though they have never done things this way before, with the very partial procedure last week and then finishing it off now, I wonder if they won’t try it more often due to their thrill of the job well done. I suppose it is up to little Ella’s body now until it is time for the second surgery of the three surgery series, which shouldn’t take place for a couple of months, to see today's true success. I am rejocing in the miracles of today though and trusting God for the future.
Also please keep in your prayers Amy and Jon. They are lacking in sleep and Amy has started possibly catching something. She had a bit of a sore throat and wore a mask to see Ella this morning. If either of them gets sick they won’t be able to see Ella. All three of them need strong immune systems right now!

P.S. - The previous post mentioned them putting bands on Ella’s lungs during the previous procedure. Although that was the message we received it was not completely accurate. They put bands on some arteries and I honestly don’t know all of the medical hoopla about the details but it was not on her lungs. The result of the bands did help her lungs and the doctor today stated her lungs looked great! Wherever it was, the Lord guided those bands to the right place because they seemed to do their jobs!

For Amy and Jon,
Aunt Rachael

Great Report!

The surgeon just came by and said the surgery was a success. He said her lungs look great! He was very happy with the way he put the bands on her lungs this week and then waited to complete the surgery today. He left her chest open, but it should be ready to close in a day or two. He also said the surgeon who opened up the restricted PFO did an excellent job. Praise the Lord! To God be the glory!!!!!

When I received this update it brought tears of joy to my eyes.  Thank you all so much for your prayers, God truly is working miracles! 

Posted by Aunt Kristina, for Jon & Amy
Update just received:

The procedure is finished. Ella is off of the bypass machine. They said it went great! Ella will probably still be in there for another hour or so because they are putting in drain tubes and cardiac lines adn cleaning her up. We are grateful to God for the outcome!

Thank you all for your prayers during this time. Please continue to pray as the recovery time could prove to be challenging for little Ella.

For Amy and Jon,
Aunt Rachael
Just received this a bit ago:

Surgery update: Still going well. Ella is on the bypass maching. Praise the Lord - that is one of the risks. Keep praying - coming off the bypass is the highest risk.
They haven't put Ella on the bypass machine yet. They want her on it as little as possible. They are working on what they can right in prep for the bypass. Thank you for all the prayers!

Sunday, August 22, 2010

Please Pray with Us Tomorrow!

Surgery is scheduled again for tomorrow. They say Ella will be first case in the morning, maybe second case. That is hospital time in case you didn’t know. :) The plan is for the surgeons to complete the procedure they began last week. As I am sure many of you remember last week’s procedure didn’t go as planned. They began the first of a three part series to fix Ella’s heart. However, once they got started there was more swelling and damage than they originally thought and so they did a very temporary fix and closed her up. They wanted to more seriously consider a heart transplant. After reviewing the options they decided to continue pursuing the three surgery series fix. So, the goal tomorrow is to complete the first of the three surgeries. This is a very high risk surgery. It should take several hours and her recovery will tell a lot about the surgeries success.

Here are the specific requests:
1.)The Lord’s hand to be guiding the surgeons and giving them wisdom
2.)Ella’s healing and protection
3.)Ella’s other organs to be protected and to continue functioning properly
4.)Peace for…well, everyone. :)

I will let you know as soon as I hear when Ella goes into surgery. Please pray tomorrow when you are prompted!
Psalm 10:17O LORD, you hear the desire of the afflicted; you will strengthen their heart; you will incline your ear.
In the meantime enjoy, with a tissue, this video we made for sweet Ella. Then go and give your kids a hug and kiss. Each child truly is a blessing and a miracle!

Saturday, August 21, 2010

A Baby is a Miracle
This little tiny baby
Was sent from God above
To fill our hearts with happiness
And touch our lives with love
He must have known
We'd give our all
And always do our best
To give our precious baby love
And be grateful and so blessed
~Author Unknown
So many of you have been faithful to lift up not only baby Ella but also Amy and Jon. Amy is recovering very well from her c-section. She has not been sick since Ella was born and that has been a welcome change to her daily routine! There have been times of nausea but she feels that is mostly related to nerves. She is regaining more and more strength every day and loves each moment with her sweet little girl.Amy is blessed to have such a great guy at her side!Jon is such a pillar of strength for Amy. He does such a great job with Ella too. They love each other so much! It was hard to pry them away but they were convinced to go out for dinner away from the hospital. I hope they enjoyed their “date night”! The little things just make you love little Ella even more! When she grasps your finger or opens her beautiful little eyes to look at you it strengthens bonds of love that you didn’t think could get any stronger. Often times those moments come at just the right time. They give you a nudge and courage to face a new day, a new moment of uncertainties.Amy and Jon are by Ella's side almost all the time. It makes them feel good to be with her. This is "snuggle time". :)
Thank you all again for the many prayers. Please continue to pray when the Lord brings Ella to your mind.

Such a Sweet Gift

The opportunities to be encouraged or be an encouragement to others have been beyond my counting abilities throughout this situation. There are events, such as this one, that happen in our life that change us. Not a temporary change, a forever change. Many of the comments on this blog are signed “heart hugs”. Mom’s of children who have had such an experience often sign their encouragements that way. It automatically says, I understand. No matter the outcome of Ella’s journey we will always have a new tender compassion for those walking such a path. The truth of the matter is there are so many people walking through difficulties such as this one all the time. Earlier this week Amy and Jon were given a gift from a family just a few steps behind them on this journey. This couple is having a sweet baby girl named “Emma”. She will be born at the same hospital in September with the exact same conditions Ella has. The couple will be staying in the same place as Amy and Jon. Do you think these couples understand each other’s pain, joys, fears, and tears? I think they understand in a way others cannot. That is what makes gifts such as the red hair bow given to sweet Ella from this couple such a special gift. Each time Ella wears it we are reminded of Emma’s family and her own journey and we remember to lift them up in prayer too.Thank you all so much for your prayers and encouragement. It means more to us than you will ever know! Those of you who have walked such a difficult path before us have been such a blessing. We hope we can be an encouragement to those around us in the same measure you have been to us. Our hearts are overwhelmed with gratefulness.

For Amy and Jon,
Aunt Rachael

Friday, August 20, 2010

Do You Know What "K" Stands For on the Periodic Table?

This morning I was reminded of the verse from Psalm 127:1

"Unless the LORD builds the house,
its builders labor in vain.
Unless the LORD watches over the city,
the watchmen stand guard in vain."

I like to read the verse this way
“Unless the Lord watches over Ella,
The watchmen stand guard in vain.”

24 hours a day Ella has great medical care. Nurses watch monitors on a regular basis. She has her Mommy or Daddy with her almost 24 hours a day and when someone can convince them to go rest away from the hospital Nana or Granddaddy stands watch. Ella is never alone. But even our absolute best care cannot protect Ella. Truly the Lord is who watches and cares for Ella.
Last night Amy and Jon were given quite a scare! About 11:00pm the nurse caring for Ella gave her Potassium instead of Calcium! This may not sound like a super big deal to you but did you know that potassium is what they use for lethal injections? Yep, (K) Potassium Chloride is the part of the lethal injection that stops the heart! Sounds a bit more serious doesn’t it? Ella does receive potassium but the dose is given over a 1 hour period of time, last night it was given all at once! Soon after the medication was given nurses and doctors were all working in Ella’s room. They immediately took action to correct the problem but mostly all they could do was monitor her closely and wait. And they did just that, for many hours. I am happy to report she is stable again this morning and all seems to be in balance. Funny thing though, after all the flushing and monitoring when they checked her blood she was low on...yup, potassium. So they gave her some more potassium. This time they gave the right amount and they gave it the correct way. :)

Ella’s life has been out of our hands from the beginning. The Lord has truly been the one who watches over her. There was more than one occasion the doctors thought Amy had miscarried but with each ultra sound they found that little heart still beating.
When they were made aware of Ella’s heart condition each doctor’s appointment “this is the worst I’ve ever seen” was heard. Amy and Jon were told Ella may not make it to birth because of the severe bulging in her arteries, but here she is. I don’t know about you but I serve an Awesome God and I think He is doing a fabulous job! Sure, this wasn’t the path we would have chosen but maybe Ella’s life wouldn’t have been able to touch as many others without it. Maybe God has become real to you because of Ella’s life. “We know that all things work together for good to them that love God, to them who are the called according to His purpose.” Romans 8:28
So with human error ever present and us doing our part to the best of our ability we ultimately cry out for the protection of Ella from the only one who can really provide it. Thank you so much for your prayers - especially in the times when you are prompted to pray and don't know why!

Thank you Lord for sparing Ella’s life…again.

Thursday, August 19, 2010

Just a Reminder

He's got the little bitty babies in His hands,
He's got the little bitty babies in His hands,
He's got the little bitty babies in His hands,
He's got the whole world in His hands.

Wednesday, August 18, 2010

A Plan Has Been Made

A plan is in place and next Monday they intend to proceed with the original plan of doing the three surgery series as the repair for Ella’s heart. Ella’s condition is a difficult one for them to make a decision for. Neither option seems great. At some point down the road Ella may still need a heart transplant but as of right now this is the plan.
The condition Ella has is very rare. It has only been within the last few decades that modern medicine has been able to even give these children a chance at all. Many times it seems as though the doctors are just “playing things by ear”. Many times, they are. For children who have this condition and need a transplant the doctors do what they refer to as a hybrid. This is the first procedure of the three part series done only to the extent of a band aid. Just to hold them over. When they stopped Ella’s procedure on Monday it was kind of the hybrid of the hybrid. Something they have never tried before. Each child with this condition is a different case and the doctors just take each step one at a time and make the best decisions as they go.
“This is the worst I’ve ever seen.” The doctors would say, over and over again at each of Amy’s appointments. But with that said Ella is physically doing better than many of the babies they have seen. She has good color, her other organs are functioning great and she holds her own pretty well. Why? We attribute that to prayer and the gracious hand of the Great Physician. I’m not saying there aren’t scary moments when her stats change suddenly and nurses work quickly around the room. But there is a reason Ella’s surgery didn’t proceed that day. Maybe her lungs needed more time to heal. God knows. I could go on and on with the “what ifs”. The Lord has this precious baby in the palm of His hand. He is orchestrating this. And we WILL trust Him!

Today they put a feeding tube in for Ella. They plan to give her lots of calories to try and help her gain some weight before Monday. They will be including in that diet baby’s best friend “Mommy’s Milk”.
They took out several of the tubes that they had in place for the surgery and Ella tolerated that well. There are lots of wires and tubes before they are taking her to surgery or doing tests. Ella Dawn Burk ~ One Week and One Day old
So, here are the specific prayer requests:
1.)Continued healing for Ella’s lungs. (I am not sure what all that entails but God knows.:))
2.)Weight gain before the surgery
3.)Continued proper functioning of Ella’s other organs
4.)Strength and the best possible health before the surgery
5.)Don’t forget to take a minute to praise the Lord for what He has already done. We serve an Awesome God!!!

Still No Decision

I know many of you have been anxiously waiting to hear new news. I wish I had great things to tell you. However, a decision has still not been made regarding the next steps to take for baby Ella. Amy and Jon have met with different teams of doctors and still have more meetings to attend. Neither option is great. There are risks and challenges with each option and statistics with both options aren’t all that encouraging.
We appreciate your prayers. Please continue to ask the Great Physician for healing for Ella. Amy and Jon could also use wisdom in this decision making process. There is so much information to take in. We will keep you updated as we get new information. Thanks again for your prayers.

For Amy and Jon,
Aunt Rachael

Tuesday, August 17, 2010

Ella Wants to See Those Kisses

Amy said it was difficult to let Ella go yesterday morning for the surgery. Understandably so. This little girl is so very loved and she gives love back in such sweet ways. This video was taken after Ella’s surgery. She likes it when mommy and daddy kiss! And apparently she wants to watch! :)

Monday, August 16, 2010

Amy and Jon... Your doing great!

Just days after announcing the pregnancy Amy starting getting sick. I don’t mean, feeling slightly nauseated sick either. Day after day she would continue to have the toilet as her closest companion and the bathroom floor as a resting place. The road was not easy! Some of you women out there understand the level of sickness I am talking about. Amy threw up over three hundred times over the course of the past nine months. It was always worth it though. She knew she had been given a special gift and was willing to fight until the end.(Necklace from encuraging friends that says "you are worth it all" given to Amy at 20 weeks.)
Amy has been such a good mom from the beginning. Already she has been willing to take steps that some people wouldn’t have walked. Since Ella has been born Amy and Jon have talked quietly to Ella giving her comfort that only a parent can bring. Such a sweet thing to see Ella crying but settle down when mommy or daddy stroke her face and whisper in her ear,
“its ok sweetie, mommy’s here”. Amy has been pumping for Ella so she will be given the best nutrition possible. She is doing a great job and I think Ella is very grateful!
Amy got to help give Ella a bath a couple of days ago and put on her first little onesie.I would be doing Ella a disservice if I didn’t give her mommy credit for the great fashion sense already being instilled in her. Have you noticed the hair bows?Like mommy like daughter - Both have double jointed thumbs. :)Amy and Jon, you are doing a great job! We all love you so much!

Ella is still stable after today's procedure. Amy and Jon are with her, enjoying each moment!

Surgery is Done

After the surgery began the doctors found more damage to Ella’s heart and lungs that they anticipated. Because of this they did not complete they procedure as planned but instead did a temporary fix. The surgeon will be visiting with the pediatric cardiologist as well as the heart transplant team today to decide on the next step to take in this process for Ella. This does not mean Ella will be having a heart transplant, but it is still an option. A decision should be made within the next 24-36 hours.

Here are the specific prayer requests:
1.)Wisdom for the surgeons, cardiologists, and transplant team
2.)Comfort for Ella as she recovers from this procedure and strength for her body to do what it needs to do
3.)Peace for Amy and Jon (Waiting can be so difficult.)

As of right now Ella is stable. The doctors mentioned the perfect timing of this surgery for Ella.

Lord, thank you for what you have done today. Please continue to orchestrate things to accomplish Your perfect plan.

For Amy and Jon,
Aunt Rachael
Just got a text that said "Pray. I will call you when I can." Don't know the details but wanted to pass the word along.

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!

Sunday, August 15, 2010

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.

Saturday, August 14, 2010

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