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!!!
My daughter Emery was in the NICU for 10 days. I can only imagine a fraction of the heartbreak you must be going through as a family. I've been praying for you all whenever I think of you, which is several times a day, and sometimes in the middle of the night. Praying for healing and peace and wisdom. Thank you for sharing your beautiful daughter with us, and may you continue to rest in God's presence. Can't wait to see Ella as a healthy toddler! In Jesus' perfect love, Jessica Collins
ReplyDeletePraying for your precious baby girl and for all of you who love her so! In the Love of Christ, Brenda Elmore
ReplyDeleteI don't know you guys at all but I came across a prayer request for Ella and your family, as well as this blog link on one of my friends' Facebooks. First off, I would like to tell you that you are in prayers all day every day. Second, is there anything at all that you or your family needs? I was talking to one of my friends about possibly getting a run/walk set up in Shawnee, Oklahoma (where I live) to raise money for Ella and let people know her story. I have done this for a former high school secretary of mine who has breast cancer and it raised over $3,000, and we only advertised it for about 2 weeks. I feel like a blessed person for all that God has given me and am eager to help wherever/whoever I can. My prayers are with you.
ReplyDeletePraying so much for Ella! Jon & Amy you are doing an amazing job and Ella is so blessed to have you as parents. Anything you may need please let us know! Praying day and night for God's perfect will and healing. Love and prayers!
ReplyDeleteHeard about Ella Dawn during my Sunday School class in Tomball, Texas and I have been praying ever since. We have a 26 year old son with kidney disease and I remember the doctor's seeming like they were having to dig deep for answers. You are lucky, you know the Great Physician. I didn't have that 26 years ago, although I believed in Jesus. I now realize how the whole time my son was in HIS Hands. I will continue to pray for Ella Dawn daily, as well as your whole family. Take each day as it comes and enjoy every minute you can. Remember that when the doctors make predictions they are relying on science and we rely on God. My son was in the hospital for 7 months the first time, but every moment and every picture is still etched in my head. These are truly Heaven's Special Children
ReplyDeleteGod chose you as parents because He knew that you had the strength and the faith to love and care for this precious child. Will post the poem later, but know that God has enormous love for both of you and Baby Ella Dawn.