PRAISE THE LORD! We have come home once again by the Lord's mercy! We are in awe of His power, blessings, and grace! Ella is doing very well, she was supposed to have BAD headaches for several days up to two weeks of solid headaches. Ella only had a headache for the first night!!!! The NP said that in her entire carrier she had only ever seen one other baby not have headaches!!! We are so grateful she is not having to endure such severe pain all day long! As Ella's incision is healing she is experiencing LOTS and LOTS of itching :/ poor baby. Ella's blog is getting close to 150,000 views! This is absolutely mind blowing to Jon and I! We are humbled, we are grateful... we are lost for words by your love and concern for our sunshine! During this season of joy for our family in Ella's victory of going through her third open heart surgery with flying colors, we are feeling sorrow for those who's babies are still fighting such a difficult fight. When we went to Dallas for our first visit with the doctors that would eventually save our sweet Ella's life, I was in my third trimester of what I can only describe as a severely difficult pregnancy. We sat through hours of testing and meeting after meeting with doctors. They told us all the things we had already been told, they told us Ella was going to be born without the left side of her heart (HLHS) They told us that she was going to be born with the right side of her heart broken (RAS) they told us that this combination of congenital heart defects is the MOST SEVERE heart defect that a baby can survive. They told us that the oldest survivor of these two conditions was about 5. They told us that this was going to be hard, long, and in the end they didn't know if we would leave with our sweet baby girl in our arms or not. They told us that this combination is very rare and after doing the numbers it's about 1 in 200,000. We were that 1, why or how we may never know but that's ok. They told us that out of all the babies that come to the Dallas children's from all over the world they only see maybe one of these a year, in 2010, they said that Ella made number 4! We asked how the other three did, they told us 1 did well, 1 ended up needing a heart transplant, and 1 died. We thought ok, 2 out of three! Little did we know that since then we have heard of two babies with these conditions other than Ella, Ella is doing well, one is on the heart transplant list, and one died. We don't know why God chose Ella for the "easy" road, we are grateful even though at times we feel guilt. We are very aware we did nothing to deserve Ella to do so well, and we know that it's not because of our love for her is more or that she is getting more prayers because these other babies are DEEPLY loved, cared for, and prayed for by many. We know that our road with Ella is going to be a mystery, we know that she may not have a long life or she may end up on the heart transplant list, but for the time we have had and will have and the quality of life that she has had makes us so very very grateful! Although Ella is through the Glenn and we are officially past the biggest part of danger of death for her, I have found myself emotional lately. Ella's next open heart surgery when she is around 3 will be a bigger surgery than the Glenn but easier than the Norewood. I am full of Joy but I can't help but think... we are still not done. The thing is even after all of the surgeries Ella will still not have a whole heart. It will still be broken... she will always be on medication, she will always be limited in activity, she will always be in more danger when she gets sick, she will be in and out of doctors and hospitals forever, she may not be able to have a family, she will be at high risk for a stroke, her heart could just get tired from working so hard and quite. She has a significantly less amount of oxygen than the rest of us, if we had the amount of oxygen she gets the doctor told me it would feel like we were suffocating... but it's all she knows. All these things will just be her life, I wish I could take all the bad and hard stuff away. I'm her mom, I want to fix it... I can't, the most skilled surgeon can't... they can only make it work the way it is. God has been so very faithful this far and I know that He hasn't brought us this far to leave us, but sometimes the future is hard to face. Living today and not worrying about the future is the only way to be a heart mom. I'll tell you one thing for sure it does make me treasure every single smile, sound, touch, heartbeat... thank you Lord for Ella's life, thank you for her quality of life, for her sunshine. Help us to trust in Your plan for all of our lives, help us to enjoy and not to worry. Comfort those who are walking in similar journeys. Help us to know how to best show Your love to others who are hurting, help us to live everyday the way You intended. Help us to grow more like you every single day. Give us wisdom on when and where to bring Ella. Place Your angles all around her, shield her from pain and sickness. Help her to always know that she is here for a purpose, that her life is a miracle. Help us to be the parents You made us to be, we are beyond thankful for Your mercy...thank you. Amen.
Beautiful post, thank you for reminding me just how precious every day isReplyDelete
So happy for you all that you're home:) My faith grows stronger thru Ella everyday. She is truly Gods child who selected WONDERFUL parents to take care of her during her journey on earth. Love you all:)ReplyDelete
Jon and Amy,ReplyDelete
Your wisdom is beyond your years. God does have a special plan for Ella. Her days were all ordered for her before there was but yet one of them. (Psalm 139). You are constantly in our family prayers. I am so thankful for God's mercy on you and little Ella.
Prayers continue for Miss Ella. God truly has a plan for her life just as He does for everyone of us. He will see her through and He will give you and Jon the strength and wisdom you need to walk with her and guide her in the plan God has because you are a part of that plan. God chose you and Jon to care for Ella, knowing He could trust you to see her plan fulfilled. Thank you for sharing her with us so that our faith is strengthened.ReplyDelete
that was a beautiful post. you all are in my thoughts and prayers. Ellas life has been such a blessing, love you
Your blog was referred to me by a friend. I've been praying for you and your beautiful baby. My daughter also had medical problems and after 10 long years, God healed her. And not in the way that the doctors thought it would be. It was amazing, it was simple and it is her testimony. Less than a year before she was miraculously healed, I attended a Women of Faith conference where Jennifer Rothschild was speaking. She spoke of her going blind at 15 and how it affected her mother more than it did her. She said that God gives special grace to those going through the trial. I looked at my daughter and it all made sense, it always seemed so effortless for her and I was hurting so for her and it didn't seem to bother her very much. Her speaking helped me and I hope it gives you the same comfort.ReplyDelete
Praying for you...
We are happy for Ella to be doing so well and to be "beating the odds."ReplyDelete
Although we wish we could be doing just as well with Emma, we know that each journey is unique and that Emma has her own path to follow.
Just so you know, though, Nana Jana still dreams of the day that Ella can grab Emma's hand as they go skipping across the playground, squealing with little girl delight.
You said it best when you said "one day at a time" was the only way for a heart Mom to live; that is the only way any of us can really live...and now that I am older, I wish I could reclaim some of the days I lost by spending my time worrying about the past or future and forgetting the joy of today. "Today is a gift; that's why they call it 'the present.' "
FYI, I just read that two young women with HLHS surgeries have become mothers recently...so the world is wide and the opportunities vast for our heart babies now!
But oh my, how blessed you already are! What joy in Ella's little face; what beautiful hair, what expressive eyes! "Today is the day that the Lord has made; I will rejoice and be glad in it." That is what you said, basically, and you are exactly right.
God bless you three as you continue down life's road. The journey is an adventure, through mountains and valleys...but always, always, God is nearby to help us find the way!
Hugs from Emma's Nana Jana to you 3 special friends; we love you!
You are a lovely mama, blessed with a beautiful family, a gift for words and an inspirational devotion to the Lord. I am so happy when I read that Ella is doing well. What an adorable little girl that God has chosen to do amazing things.ReplyDelete