Quick update

Amy just passed on this quick update to me....

"They are preping to pull her cardiac lines, they might be pulling her catheter too, and I think they are going to seperate the drainage that is coming from the drain tubes to see if they can pull one. Also they will be pulling out her neck line soon and they are going to let us feed her MY MILK!!! No yucky pediasure or formula!!! This will be painful and she will also have to endure CPT (vibrations) to help with the partially collapsed lungs. She will NOT like that, lots of turning and movement."

 

Thanks everyone, for continuing to pray!

 

~Aunt Kristina

Morning after Surgery

It's a new day and we have some new reports and prayer requests for Ella!  The night was long, as expected, but there were no major complications.  And they were able to take her off the vent!

Prayer Requests

-Please pray for Ella's oxygen levels to stay up where they need to be!  Right now her right lung is partially collapsed, and possibly the left as well.  They need her to cry some to help open up the lungs again.  The problem is, when she is awake, she cries too much, so her oxygen levels drop too low (in the 60's).  If this continues, they will have to either put her on the CPAP (the machine that forces air into the lungs) or even back on the ventilator.  Please pray that this would NOT be necessary!

-Today they plan to take out her cardiac and neck lines.  We are praying that this is successful because Ella is really hungry, and when they take these lines out, they will be able to give her some clear liquids.  They still need to leave the drain tubes in for now because there is still drainage, but that is normal.

-Pray for relief for Ella from her headache.  It is very obvious that this is bothering her because with the littlest noises, she cries.

-And last, but certainly not least, please pray for Jon & Amy.  They did not sleep at all last night, so they are exhausted, and they are showing some physical signs of the stress.  Pray for God to give them the grace and strength they need to get through this time.  Ella is so blessed to have them for parents, they are both so strong for her!

We thank you all so much for your prayers.  Let's continue to lift Jon, Amy, & Ella up to our heavenly Father, who knows our needs even before we ask.

Let's pray this verse especially over them today!   ‘Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.’ Isaiah 41:10  

Gratefully,

Aunt Kristina

Long Night Ahead

Ella is still in a lot of pain and the surgeon did not want to give her anything because they are trying to get her off the ventilator as soon as possible. The pain is so intense right now she is really getting worked up. The surgeon finally decided to give her a half dose of morphine to help calm her down. It is a vicious cycle because if she is to calm she won't breathe so they can't take her off the vent, but if she gets to worked up she isn't breathing right so they can't take her off the vent either. She has a lot of pressure going to her head that wasn't there before the surgery and the vent is adding even more pressure so she has a very bad headache. The sooner they can get her off the better because that will relieve some of the pressure.
The nurse said the first night after the Glenn is horrific because they are trying to get the ventilator out and get all of the medications balanced out and the baby is in a lot of pain. It is very difficult for Jon and Amy to watch her in so much pain and not be able to do anything about it. We are so proud to be their parents because they are right by her side comforting her, praying for her, and loving on her. They are taking such good care of her!

Please pray

• This half dose of morphine will be the right balance to get her calmed down and off the vent
• Her pain would be minimal
• Peace and strength for Amy and Jon
• Rest for all 3 of them tonight
• Wisdom for Amy, Jon and the doctors

Very Grateful to All of You,
Grandaddy and Nana

New Prayer Request

I just talked with my mom on the phone and Amy wanted me to post a couple special prayer requests for Ella.  Jon & Amy are with her now, and even though she is still sedated, she is showing signs of being in a lot of pain.  Also, with the slightest noise or movement, she begins to cry.  Right now they are being very quiet in the room, keeping the lights off, etc.  Please pray that this pain would go away quickly, as these next 24-48 hours she will be weaned quickly off pain medications.  Also, please pray that she will be able to come off the vent easily.  At this time, she is still not breathing above the vent at all, but that is normal while under sedation.  The prayer is that as she begins to wake up, she will also begin taking breaths on her own.  We thank you for all your prayers so far, and ask that you please continue, as these next 24 hours will be very crucial in Ella's healing & recovery process.

Thank you!
~Aunt Kristina

Surgery is OVER!!!!

The surgeon said all went well!  Amy and Jon will get to see her go down the hall into ICU shortly, and then it will be about an hour and a half before they get to be with her in her room.  They hope to get her off the vent in 6-12 hours.  We are SO grateful to God for his mercy & grace!  Thank you God, for allowing us to have more time with Ella!  Praise and Glory to your name!  Amen!!!

Surgery update #3 More Good News!!!!!

Ella is off the bypass machine now and they are finishing up the procedure!  They they will start the closing up process.  They will give another update in about an hour, and the surgeon will probably come out and talk to Amy and Jon in about an hour and a half.  They probably still won't get to see her for 2-3 hours, but we are very relieved the bypass part is over!  Praise the Lord!!!!  Everything is going so well!!! 

Please continue to pray!


~Aunt Kristina

Surgery Update #2

Still going well!  They are still trying to cut through the scar tissue and sternum.  It is taking a little longer than expected, but no complications. :)  They should update again in another hour.  Please be praying especially for this next hour because she should go on the bypass machine and that is the most risky part of the surgery.  Thank you all SO much!

Surgery update!

Everything is going well.  They got in 2 IV's, an ART line, and a line in her neck without any problems.  They have now started actually cutting through the old scar tissue to make the incision - that will take about an hour.  They should call with another update in about an hour.  Thanks for praying!

“These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.” John 16:33



~Aunt Kristina

Surgery underway

Ella's surgery began about 8:30 this morning, and it is expected to last 4-6 hrs.  We should be getting reports throughout the operation.  Please pray for Ella to handle the operation well, for the doctors to have wisdom and for the Lord to guide their hands, and for Jon & Amy to feel peace during this time.  I will update as I recieve news!

Prayerfully,
Aunt Kristina

Doctor pre op visit

 I apologize I am just now getting to the update of today. I was so tired after today's events Ella and I took a long nap, then rather than updating right away I spent the evening loving on my girl, now she is sleeping I can update, ( have to have priorities). Just the same I know you are anxious so after a long day and lots of testing, and blood work :( , we are a go for the Glenn open heart procedure first case in the morning! When we met with the surgeon I made him assure me he would do his very best! I asked him if he would be extra extra careful, he said yes, I immediately stepped up to where he was sitting and told him to look in her eyes :) I am convinced that one look in her eyes and he wouldn't be able to stop thinking about her :) sneaky I know :) but a mom has got to do what a mom has got to do! We will be getting to the hospital around 5:30am - 6:00 am surgery will begin sometime around 7:00am. I really don't have much to say other than PLEASE PRAY for Ella tomorrow and the days ahead of recovery. Please spread the word, share the blog, etc. with all your friends that are willing to lift her up in prayer. This surgery is significantly less dangerous than the previous 3 surgeries, however it is still open heart surgery! They said they expect the surgery to last about 4 hours and we are supposed to have hourly updates. One piece of VERY good news is the hospital stay could be much less then we had previously understood it to be!!!! We had originally heard 2 weeks, but today they said if all goes well we are looking at 5 to 7 days in the hospital and then we will stick around in Dallas for a day or two for follow up, then HOME!!!!! We are nervous but optimistic, we thank you in advance for the hundreds of prayers that will be sent her way!

2 days to go...

We have arrived in Dallas and tomorrow it begins. Doctors appointments, x-rays, echo cardiograms, EKGs, blood work... tears. It will be a long day for Ella, and for Jon and I. Not sure I am quite ready to be back here in this place, but ready or not the time has come for Ella's next big step and I am scared yet so very proud of how brave and strong she has been. Knowing that in the past she has blown the doctors away with her progress helps me hope for the best, yet being a mom, and knowing the facts makes me still fear the worst. The plan for now is to have her third open heart surgery on Thursday, I don't know what time yet, but I know it will be God's time! She will have to be put on the ventilator, and the bypass machine, she will be in a hospital during the flu season, she will have lots of opportunities for infections... etc... any single one of these things could take her life, not to mention one small mistake from the surgeon or slip of his hand and the consequences could be fatal. Ella is full of smiles today, playful and sweet. She isn't in pain and she isn't scared of what lies ahead. I wish I could explain why I'm "allowing" the pain she will feel. I'm glad she isn't as anxious as I am. Somehow it seems cruel to smile at her one moment and then make her endure such pain the next, but it's what has to be done. I wonder if that is how God feels when he looks at us, He sees the pain we are about to endure and we have no idea it's coming and then BAM! It hits like a mighty ocean wave knocking us down and twisting us upside down. Sometimes we don't understand why, and sometimes God can't explain, but we know that we can trust Him that the pain is only temporary, and it's for our ultamite good. Sometimes when those times come it's hard to trust Him and sometimes we can get angry or our feelings get hurt thinking why did He allow "that". I only hope Ella won't be angry at me... maybe one day she will know just how very much I love her and that this hurts me so much. Please be praying for peace, strength, wisdom, comfort, and most importantly please pray that the Lord of miracles sees fit to save her life once more.

Please pray for wisdom!

We made the reservations for the Ronald McDonald House today... wow it's getting close! Ella gave us a little scare this evening, her oxygen readings were in the low 70's and upper 60's After talking to the cardiologist on call he told us to take another reading an hour later and if it was still low he wanted us to bring her to the ER at Children's. Jon and I felt very uncomfortable with that, we have been told the hospital is the worst place to be because of germs!!! Now two weeks before her surgery we don't want to risk it, however, we didn't want to put her in danger! We also didn't want to have to put her on oxygen again. So I prayed that it would come up so that we could at least wait till office hours so we don't have to go through the ER. We checked it an hour later and it had come back up to the low 80's (perfect)! Praise the Lord! I will be talking to her cardiologist hopefully tomorrow, please continue to pray for her as the surgery approaches. It is important that she is healthy when she goes into the surgery for the outcome to be better! We need wisdom to know how much food she needs to gain the proper amount of weight, wisdom to know when to get her immunizations, wisdom on the timing of this surgery. So scary, thankful the Lord is in control.

2 weeks

Well today marks 2 weeks till we head down to Dallas for Ella's next open heart surgery. We were originally scheduled for the 6, but things change frequently in the medical world. So we will head down on the 11th to get settled, Ella will have testing all day on the 12th and if all looks well on the tests she will undergo her third open heart surgery on the 13th. Lord willing, after this one, we will only have one more open heart surgery to go, but unfortunately still several caths. Ella is still rocking out like a champ! She is happy as can be, she will be 5 months old on Jan. 9th! We ask that you continue to pray for her heart function, for her (and our) health, for her continued growth, and most importantly for God's timing on her upcoming surgery! I have been very anxious lately, carrying many burdens, and worrying. I fear Jon or I will get sick and not be able to be with her for her surgery, I fear that worse she will get sick and have to be postponed and placed in the hospital or worse... I fear that something will go wrong this time. I fear. I guess here lately I've been feeling like we have been so blessed this far that our blessings might just run out... It doesn't help that I have been starting to feel like I'm fighting off some sinus junk that could potentially turn into a cold and in turn I would have to stay away from Ella. That would break my heart under any circumstances, but right before she is to undergo a major heart surgery well... maybe you can imagine the fear that seems to grip my heart. Last night as I was laying in bed, headache, nauseous, and wearing a mask (for sinus stuff) All I could do was pray, asking God to show mercy. As I prayed desperate prayers over and over I heard a still small voice in my heart reminding me that God chose me for this journey, but He never indented on me walking it without HIM! I had taken those many many burdens and fears upon my own back when He is willing to carry them. So I struggled as I began to realize that I have no control and fighting for control is a losing battle. Besides I clearly couldn't handle control lol! So I laid their battling myself and my fears repeatedly giving them to the Lord and then two seconds later realizing I was doing it again... so maybe I have a long way to go :) Nevertheless God is there for me rather I utilize His help or not. After a somewhat long night of endless tossing and turning, crying baby (she crys when she drops her passy...), and a midnight dose of medication for my pounding headache, I woke up to another day. Another day wearing a mask, not seeing other humans, and battling my own fears, but somehow I feel incredibly blessed for this day! God is here to help me when I fear, Jon is home, Ella is smiling, and with no one to see and no where to go I might just take a nap :) ! So two weeks out and reality seems to sink in all the more, fear rises often, and true the risk is high, but knowing that so many of you are praying for us truly helps. Please pray for health and peace these next two weeks especially. Sometimes as I watch Ella play or sleep and my eyes fill with tears, my heart hurts for all she has endured and all she has yet to endure. I'm sad for all we have endured and what we have yet to endure. Then I feel almost guilty for being sad when everything has gone far better than was predicted. I think it's hard sometimes for people to truly understand the reality of Ella's condition. The reality is she shouldn't be here, she certainly shouldn't be out of the hospital, she should for sure be on oxygen, and her eating full feeds from a bottle by this point is nearly unheard of in her condition! Ella has never once struggled gaining weight, that never happens with these babies!!!! She has made it through four surgeries several drain tubes, cardiac lines, pacing wires, art lines, iv's, ect. never once did she have an infection... UNHEARD OF!!! She had two open heart surgeries her first hospital stay, and she was only in the hospital a month... CRAZY! Yes my friends God is good... no GREAT! So instead of being frustrated that some people think we are exaggerating the circumstances I should be full of Joy that she is doing so well!!! Friends, I realize it's hard to believe that Ella's cardiologist told Jon and I that Ella had a 20% chance to live before she was born, please don't rob Christ of the praise He deserves for the MIRACLE He performed in her life by shrinking the severity in your own minds! Ella is doing so well only by HIS GRACE AND MERCY! God has done a miracle HE DESERVES ALL THE PRAISE!!! Jon and I frequently comment on our unbelief before our own eyes! She is a constant reminder of His love toward His children! I will get down off my soapbox now, but God is sooo good! Thank you all for your constant prayers for our sweet Ella Dawn and for Jon and I, we ask that you continue praying for us all as this journey still has such a long unknown path ahead. You all are treasured, I pray that God will use Ella in your lives as you are able to witness His goodness in her life! Many blessings on your families, I pray that you will know the love of God in your own homes as well!

Please keep Emma in your prayers too, she has had some very hard days and is now waiting on a heart.

Ella's first Christmas!!!!

We hope you all had a wonderful Christmas! What a blessing it was to be home with our sweet miracle Ella Dawn!

Monumental week

                                       Snuggle time with daddy after bath and before bed!

Sweet baby girl

tummy time and lots of slobbers :)

playing in her bumboo!

she fell asleep holding her toy, so cute I had to take a picture before I put her in her bed :)

On  our way to see the Christmas lights!

I think I was too excited she was a little freaked out, I was so happy to be out as a family even if we still didn't come in contact with other humans :)

chillin with daddy before we started to drive!

She LOVED them!

Well Ella is 4 months and 6 days old! and this week is the FIRST week we haven't seen a doctor since she was born!!!!! We have made it half way through the week, and as long as Ella continues to do well we will make it!! I am so excited, I'm so sick of going to doctor's offices. I am grateful for them, but sick of them ;) So this is a very monumental week for our family! Jon and I took Ella to drive through a Christmas light display... she loved it! She was so interested she would follow each display with her little head as we slowly drove by, it was SO CUTE!!! Also Ella did so good sleeping last night, she sleeps 12 hours about every night, but still gets up to eat at 7 before she goes back to bed for her last three hours of sleep! Sometimes she wakes up for her passy but not last night!!! She is such a big girl, she also said "momma" the day before she turned 4 months!!! She was crying when she said it, but it still made my day!!! We LOVE HER SO MUCH!!! She always makes us laugh and smile! Thank you all for your prayers, please continue to pray for all of our health as the surgery approaches! Thank you Lord for Ella!!!

prayer

Please be praying for Ella's friend Emma, ( http://www.emmajanae.blogspot.com/ ) It looks like she will be going on the heart transplant list. Her heart and lungs just aren't working like they should. This is a long long road.

Please also be praying for Brittany, she is the mom of a little boy named Taylor. Taylor has one of Ella's heart defects and he has had the first two stages of surgery done, but he has been in the hospital for 7 months. We just got word this morning that he isn't going to make it.

Hearts are heavy in the Burk household today... We are beyond grateful for Ella's life and we are reminded daily that she is a miracle. We humbly ask that you continue to pray for her to thrive, as she approaches stage two of the heart surgeries. Thank you

Another Day

Well we have blessed with yet another day with our sunshine! She is such a joy! At her pedi weigh in Tues. she weighed 12lbs. 7oz. !!!! If you remember we cut her calories from 30kacal to 24kcal, apparently it didn't make a difference for her weigh in hahaha! She is almost 4 months old, that my friends is CRAZY and just NOT acceptable! How can she get so big so fast, please tell me it slows down, because if it doesn't she may just be married with kids of her own next week :/ As for an update on her daily life, she is almost perfectly normal like any other baby! She is eating 4oz every 4 hours, she eats, plays for 2 hours, sleeps for 2 hours, and she is sleeping 8 to 81/2 hours at night we get her up feed her put her back to bed for an additional 3 hours! It is working out very well! She is not rolling over yet, but we aren't too concerned since she can't have too much tummy time with her sensitive tummy (it's more important that she keeps down her meds!) She downs all her feeds in about 5 min! She is soooo very happy and alert, she holds up her head very well for laying flat on her back the first month of her life! She is slowly sitting in her bumboo for longer periods of time building up those neck muscles! She is in size 2 diapers and in 3 to 6 month clothes! Her stats are staying very stable since her last surgery! So to wrap up, she is eating like a champ, gaining weight, sleeping well,  holding her stats stable, not throwing up regularly, developing right on track,... God is still in the miracle working business friends!!!! Also her next open heart surgery that was tentatively scheduled for Jan.6th has been moved to the 13th... of course this is VERY subject to change even after she is under sedation! So we ask that you continue to pray that the Lord's timing would prevail and we would have peace whenever that time may be! Thank you all for your prayers for our little girl, she is doing wonderful, the doctors are amazed and so are we! She has gone through 4 heart surgeries and has 3 to go, we know that the Lord will be in complete control even though we are scared for what's to come.


http://www.emmajanae.blogspot.com/  This baby was diagnosed with the same 2 conditions Ella was in the womb
http://www.lyricelise.blogspot.com/  This baby had VSD and is recovering from her surgery!!
http://www.tonyandtawni.com/ This baby has 1 of the 2 conditons Ella has (HLHS)
http://www.bowensheart.com/ This baby has 1 of the 2 conditions Ella has (HLHS)