Tuesday, December 28, 2010

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.

10 comments:

  1. You are such a darling family...all of your pictures are so cute! With that said, our Father in Heaven will watch over you and your sweet little Ella. HE will be there to comfort you in all of your difficult moments! May God bless you and your sweet family!

    ReplyDelete
  2. I am praying for you and Jon and Ella. In view of all the great blessings God has poured out...and all the unknowns that the future holds, one thing is always sre: He is faithful. It's funny how that truth takes on new meaning when the storms of life are raging. It becomes more than a Sunday School sentiment; it becomes an anchor. Love you!

    ReplyDelete
  3. You all continue to be in my thoughts and prayers. God will be there for all of you when you need Him. It is hard at times for us heart parents to really believe and not spend time fearing everything. I have days like that and then I realize God is watching over us.

    ReplyDelete
  4. We continue to pray for little Ella and all of you! This road is a rocky one for sure! Scott and I thank God daily for giving us Emma! Emma has shown us strength when we are weak. The doctors do not know what is wrong with her, but she keeps fighting, so do we! Our God is a BIG GOD and has our best interest at heart! These girls are tough! See you in a couple of weeks! Love to all!

    ReplyDelete
  5. We are friends of Scott and Sarah's, and we found out about Ella through their blog. We have been checking on Ella, too. It is wonderful that she is doing so well, and we pray for her upcoming surgery. We never heard of this heart condition until Emma. But we have learned so much. Above all, we have seen the strength and faith in God, that you as parents have had throughout your journey. All of you are amazing!!!

    ReplyDelete
  6. I would love to come visit y'all when you're here for her Ella's surgery. I will definitely keep your family in my prayers. Let me know if I can do anything for y'all while you're in Dallas. Take care!

    Maribeth Gillis
    HLHS - 25 yrs.

    ReplyDelete
  7. God truly is AMAZING! As I read your post, my heart broke for you at first but I love the way you took your fears and laid them at the Father's feet. I can't imagine how very difficult it is for you, but I know God is with you through it all and He will continue to bless you and give you strength. Satan will try to steal your peace, but when you begin to praise God, he runs for cover!!!

    I continue to pray for you and for sweet Ella. It's only natural that you would have concerns and yes, fears, as you face the unknowns, but you know where to turn when those fears overtake you. Someday you will share the details of Ella's journey with her and you will see how you grew. God has it all planned out, just keep trusting Him.

    I love the pictures! Ella Dawn is such a sweet heart!

    Joy/Chandler, OK

    ReplyDelete
  8. My heart breaks reading about your struggles. But all I can think of is how special all this documentation will be to Ella as you read this to her on her 1st, 5th, 10th, 20th Birthdays! It will remind her how special she is to you and to the Lord that saw you through all this! As you struggle to make sense of all this just remember that the Almighty Healer has complete control of the situation.

    ReplyDelete
  9. I am a heart mom of Katie, who is 16. I met you in the dr office at mercy the day before Thanksgiving. My family has been praying for Ella since before she was born. I will send out some special prayers for you...Ella's mom, as I too have been in your shoes. It is not an easy road to be alone and not spend time with other humans...I get that! We too use to drive around and look at Christmas lights. God is good...and he also gives us the patience we need to get through these tough times. I can't wait for the day Katie and I can possibly come and visit with you and you can ask away with all the questions you have. Heart moms share a special bond that no one does get....except other heart moms. I lift you up in prayer and know that God is carrying you through these tough times by yourself. I get the circumstances you are dealing with..for I have been there myself many times. Feel free to find me on facebook or email me at mcooke@cox.net. Would love to visit with you and hopefully answer any questions you may have. God Bless your family!
    Carrie Darcey Cooke

    ReplyDelete
  10. I pray for the three of you often! I specifically pray for the Lord to continue to work miracles in sweet Ella and for a peace that passes all understanding for you and Jon. I miss you so much dear friend and I can hardly believe Ella is almost 5 months old. Crazy! I am so thankful for the obvious work(s) God is doing in your life and your willingness to, without reservation, return the glory to him. You are a wonderful example to me. I love you, friend!

    ReplyDelete

Note: Only a member of this blog may post a comment.