First off I want to just say a VERY SPECIAL THANK YOU to my sister Rachael, who has so diligently been keeping up with Ella's blog for me! Rachael you will never know how much this has meant to me, knowing that Ella's story has been shared with so many truly makes this journey easier to walk! You have done an AMAZING job! I love you!
Well Ella is adjusting very well to home! Jon and I are beyond thrilled to be back! We took Ella to see her cardiologist here in okc, and he said she is doing GREAT!!! We continue to hear time after time from doctors how phenomenal she is doing... it never gets old! We also took Ella to see her pediatrician and again She had all good things to say about little miss Ella! Ella is now 8lbs.12oz.!!!! She is growing so fast it makes me kinda sad, but it is actually a VERY good sign! Heart babies tend to be on the small side because their heart has to work twice as hard and they burn more calories. Ella has had an EKG and X-Ray since she has been home, and they both looked great! We have to get her oxygen level checked twice a week at the doctors office, and we see her cardiologist once every two weeks. We continue to be encouraged by all of your prayers! For all of you that are wondering what things look like for us from here, this is the plan. For the next three to six months or so our job is to keep Ella healthy and get her as big as possible. Her next open heart surgery will be around Christmas or new years (we think) Until then Ella is in a crucial position. There is a 10% mortality rate between the surgeries she already had and the next one, most of the deaths occur when a baby gets sick. So the doctors gave us strict instructions to "guard" her very carefully, they want her to stay away from children (because you never know when they are sick) and they don't want anyone touching her or breathing on her that are sick or have been around anyone sick. They also strongly encouraged us to limit others holding her. We realize so many of you want to see the miracle you have been praying for all this time; however, because of her being at such a high risk (especially this flu season) small peeks for short times is the best we can do for now. Hopfully after her second surgery we will be able to share her more with you all! After her next surgery we will have her here at home for three to five years and then we will take her back to Dallas for her last surgery! Ella still has quite the road to travel, but we know that God will be in control every step of the way! We continue to ask for your prayers for Ella, as she still has so much to endure! We can not thank you enough for the prayers and gifts you all have already blessed us with!
please continue to pray for and follow our friend's baby Emma, she will be going down the same path as our Ella! Also please pray for our friends Summer and Travis, their baby girl is one month older than Ella, they just found out that she will need surgery on her heart as well. Although the diagnosis isn't as "serious" it feels the same to a parent's heart! Thank you all so much.
she is precious! you three will remain in my prayers. so glad to hear the good news.ReplyDelete
I have been diligently checking for an update! Thank you so much for letting us all know how Ella is doing! Her little body continues to be in our prayers, as are your & Jon's strength & health. Keep posting pictures of your beautiful girl!ReplyDelete
Casey, James & Baby Eli
I am so amazed by your little girl's strength! She is absolutely beautiful.ReplyDelete
Amy, thank you for posting the update. I check the blog 2 times per day hoping to read good news - and today it happened! She is SO adorable and she is dressed SO cute - good job, Mom! Prayers will continue in her behalf and also for Jon and you. Our God is a Mighty God and Ella is His miracle baby! With fondest affections, Vicki (Tammi Foster's friend)ReplyDelete
Great News Ella. Our prayers are continually with you guys. Stay strong!ReplyDelete
Thanks for the update, Amy! She is so beautiful.ReplyDelete
Praying for Ella to stay strong and healthy & for you & Jon as well!! LOVE YOU THREE!!ReplyDelete
Someone posted your link on FB and we have been following ever since. We live here in OKC and special needs babies are close to our heart because our niece almost died from an incorrect diagnosis when she was born. She was at children's for 4 months. She will be on a feeding tube for a long time to come. BUt she just turned 2 and is doing good. They also limit contact because she is still very fragile.ReplyDelete
Very VERY thankful you were able to bring her home. Continue to pray for God's blessing on her.
Isn't God awesome? He can take what seems like a hopeless situation, and just says "Watch what I can do!!" So happy for you guys... She's beautiful!ReplyDelete
Amy and Jon,ReplyDelete
I am a total stranger to you both but I have kept your family in my prayers as little Ella has progressed on this journey. I live in Baton Rouge but my daughter and her family live in Dallas. I heard of Ella thru Jen's website. She is an amazing person as well as photographer. Keep the faith...she is a beautiful baby!
Many thanks to Rachel for the wonderful updates. With warmest regards, Toni Turnley