It is with great joy that I bring good news to everyone this evening.
First of all, they switched out the ECMO machine late this afternoon without a hitch. No problems!
Second, we talked with Dr. Kays. He performed another chest x-ray and there was improvement in her lung development since Thursday of last week!!! Since he changed out the ECMO machine, he wants to give her a couple of days longer on ECMO, still holding out hope that her stats can improve a bit more. He would like to see her stats stabilize and increase forward over the next day or so, remove her from ECMO on Wednesday or Thursday and then do the surgery.
As you can tell, he really does not want to perform surgery on ECMO either! Maybe Ella keeps hearing him talk about it, and decides to fight a little bit harder, just to make his decision tougher!
Actually, I think this is a direct testimony to all of you that are praying for Ella each and every day. Dr. Kays did not expect to see this much improvement in Ella over the past few days. This can only be directly tied to God’s hand moving in a miraculous way. And believing that prayer is powerful, we want to thank each of you for your support and prayers.
Dr. Kays decided to turn down the flow in the ECMO machine today (since he replaced the circuit) to 100 (we started at 220 and decreased in increments of 20, down to 120 as the lowest point before turning it back up to 160 last week). He will be monitoring her stats to see if she can stabilize and improve with the lower flows. Please continue to be fervent in prayer – – we still are holding out hope that Ella might be able to have surgery off of ECMO.
Finally, her pink head band that I wrote about last night. There is a story behind this one. Since I did not see Ella due to my ER visit, I just assumed that it was provided by the NICU. There are more girl babies in the NICU right now (Ella was the first baby girl with CDH since 2 years ago; all the other patients have been baby boys). Anyway, I just figured it was a standard item that all the baby girls would get to enjoy.
When we visited tonight, why was my baby girl the only one that looked so fashionable? We found out that the ECMO technician, Roger, that Josh and I have spent many late nights with by Ella’s bedside, went and got it for her. Isn’t that too cute? Then, when we arrived today, a nurse by the name of Joy added the bows to her headband. Way too cute!
Ella was awake and looking at us this evening, giving us those eyes of hope and gripping us to tell us that she is still fighting.
Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Eusey Family on August 13th, 2007 at 9:50 pm #
Way to go Sweet Ella! Tears of joy in our home tonight for our sweet niece and cousin. Tina, thanks for the late update – we have been checking every minute. Hope you are feeling better too. Love to all. Rick, Shannon, Megan, Richard, Claire and Ryan
Joel Snyder on August 13th, 2007 at 10:13 pm #
WOW!!! Ella you are truly amazing and what a fighter. I am on my way to work and will tell all the Dinos the good news. Taco and Manny send all their Love and Kisses. Please sleep tight and rest. Tina and Josh keep the faith. I Love All of You. Grandpa
Mollie Rosing on August 13th, 2007 at 10:23 pm #
great news, tina and josh! good work sweet ella! love and continued blessings, the rosings
Kevin and Dana on August 13th, 2007 at 11:01 pm #
We knew you could do it Sweet Ella!! Josh and Tina- It’s so nice to see you both smiling. The prayer chain just keeps getting bigger and bigger. God is listening to all our prayers for your sweet little girl. I don’t think i’ve prayed this much since my little Tyler was born. Prayers, hugs, and kisses to you all!!
monika on August 13th, 2007 at 11:02 pm #
precious tina, josh and ella, GOD IS GREAT AND MERCIFUL; we affirm with you Hebrews ll:l that faith is being sure of what we hope for and certain of what we do not see; we rejoice in gratitude with you and everyone touched by GOD’S HANDS in these miracles and trials. AMEN, AMEN, AMEN
Chris & Lori Vodnik on August 13th, 2007 at 11:08 pm #
Praise God indeed! Matthew 7:7-11. We are so glad to hear good news. We will continue to ask and ask and ask for Jesus to heal Ella and guide the doctors. We miss and love you.
Gloria Butler Jacobsen & Red on August 13th, 2007 at 11:38 pm #
Great to hear of the improvement!! We are keeping up the prayers. God bless all of you! Gloria & RED
Geoffrey on August 14th, 2007 at 6:27 am #
Woot! That is wonderful news! Keep it up, sweet Ella!
Christina DuHart on August 14th, 2007 at 6:59 am #
Josh and Tina, I was so happy to read your latest update. I have been telling LeChaun and LeChaea about Ella. They will be happy to hear the news. They both think she is so cute and can’t wait to meet her. Keep up your strength. I hope your feeling better Tina.
Lisa (Ms. Texas) on August 14th, 2007 at 6:59 am #
WooHOO!God is AWESOME! Way to go Ella! You are such a sweetheart! I have a prayer chain started for you here in TEXAS. Big healthy lungs and stable stats all the way! Josh and Tina all my love and support go out to you!
Joan Odell on August 14th, 2007 at 7:28 am #
Praise God!!! We are so very excited and happy for all three of you. Isn’t it wonderful to witness these small miracles as they lead to larger ones for Ella. You both look better and it is good to see your smiles. Prayers for the three of you, Dr Kays and his family and all the caregivers who minister to Ella and the two of you. What a blessing for all of us to walk with the three of during this journey!! Prayers continue — hugs and more hugs!!!! Steve and Joan
Char Snyder Jordan on August 14th, 2007 at 7:43 am #
It swells my heart and gives me great pleasure to know that God lives and Jesus is the Christ. Ella’s progress is a testimony to all those who are dedicated to praying for your special baby. We love you we will stand the fight. We honor your love and devotion to Ella and the love of God. We are with you in Christ. Love, Aunt Char and JIm
Shannon on August 14th, 2007 at 8:40 am #
Reminder to send me your pieces for the book we are putting together for Tina and Josh. You can email or send (see post from last week) or email me at [email protected] if you have any questions. I would like to finish up by next week. Thanks! Shannon
Crystal on August 14th, 2007 at 8:46 am #
Great news! We will continue to pray. My oldest son (4 1/2), Micah is praying for baby ella. This has brought up some good converstaions. He loves to look at Ella’s pictures with me.
Heidi on August 14th, 2007 at 9:30 am #
Thank you God! We are so excited for all of you for this good news 🙂 We will continue to keep praying for Ella, Dr. Kays and of course both of you. Tina hopefully you are feeling better too. Heidi, Paul and Alyssa
Kelli Billman on August 14th, 2007 at 9:42 am #
Fantastic news. Tina, I hope you’re feeling better as well! Keep up the great work Ella!
Tracy Mitchell on August 14th, 2007 at 9:49 am #
Praise the Lord! Our GOD is a great GOD! You guys are so awesome and such a blessing! Praying for you!
Fran Jarrett on August 14th, 2007 at 9:58 am #
Oh Dear Ella what a little fighter you are! And so adorable in your pretty headband.
Lesli Richards on August 14th, 2007 at 10:30 am #
Ella looks so cute with her little headband. She even looks like she feels a bit better. We are praying for her to handle the lower ECMO settings like a champ.
Jessica Morgan on September 25th, 2007 at 12:40 pm #
If it helps at all our baby girl was born there at Shands on February 21st 2007, she was a right-sided DH with over 75% of her liver in her chest and an LHR of .58. While I was going through it all I was a little uneasy that this was less common in girls, I guess because I wasn’t sure exactly what that meant. I came to find it means nothing except that “it happens less commonly in girls” 🙂 I went through my pregnancy being told that statistically she was a ‘non-survivor’ and she’s now home and keeping me very busy. We had some rough days and we had to tell ourselves constantly to trust in God and that He knew better than I why she had to fight so hard so early on. Your baby girl is beautiful and just from the little that I’ve read I see that God chose strong and special parents for her, you all will be in our prayers. Post a comment
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