Posted (jooosh) in All Posts on August-21-2007

Our baby girl sustained through the night. Her blood pressure continued to be low early this morning so they gave her more blood. The pressure has been fine ever since. Her c02 gases are back down to where they should be and her O2 is still solid.

Ella looks good this morning, a lot better then yesterday. She was awake when we arrived at her bedside. She been on a double dose of fentanyl since the surgery for any pain. Her incision looks a bit more red today, but that’s normal.

Dr. Kays indicated that a chest tube would be inserted on Wednesday to relive the fluid in her chest. This is typical with severe CDH cases. He’s also planning on removing her ECMO cannulas then as well. I can’t wait for her to get these out! These cannulas have minimized her ability to turn her head and restricted the way her body can be turned. Once these are removed, they’ll be able to let her rest on her side and belly. This should also help with her fluid build up.

Late yesterday afternoon, Dr. Kays shared with us the details of the surgery. He confirmed that as severe cases go, it was textbook: the surgery went very smooth and there were no complications. (Praise Jesus!)

He confirmed the severity of Ella’s CDH. Only about 5% of the left side of her diaphragm existed. He had to stitch in a pretty large GOR-TEX patch to fill the space.

He also had to use some of the patch when closing the incision, as to not put too much pressure on her organs. You can’t see this patch though because it’s below the skin, but stitched to her abdominal muscles.

We asked about how her body would respond over time to these patches. The hope is that the body will grow around them without issue. This isn’t always the case though.

At the moment, there are risks of a possible infection. As Ella gets older, she’s going to grow, but her patch is going to stay the same size. For this reason, there is a chance of a reoccurring diaphragmatic hernia which would require another surgery.

In the middle of my head spinning with all this information, Dr. Kays stopped and asked, “And what do we call surgery for a reoccurring diaphragmatic hernia?”. When I couldn’t remember the answer that he had previously shared with us during our initial visit in June, he replied with a smile, “We call that a privilege“.

To be blunt, it is called a privilege because you can’t perform this surgery on a baby who doesn’t survive.

Something we did learn is that not all of Ella’s organs were put back in the “right” place. For example, due to restrictions of her intestines developing in her chest, her colon and large intestine had to be routed a bit differently. Her appendix is actually on her left side! These are some of the reasons for future problems like reflux, but we pray that these would stay to a minimum.

We praise our Lord for the successful surgery yesterday and are so blessed to have Ella with us. It blows our minds to see how God is using this time to stretch us and touch so many other lives.

Please continue to join us in prayer for our baby girl.

We love you all.

BTW: In the middle of writing this post, Dr. Kays walked in and said that he is “pleased” with her progress and felt good about her current stability. Go Ella!

P.S. Tina and I had slept better last night then we had in awhile. We got a solid 10 hours. (yay)

Cathie Firestone on August 21st, 2007 at 9:23 am #

PRAISE GOD!!! Dr. Kays is indeed amazing…you will be thankful for and to him for the rest of your lives…just as we are! She looks really good…and I’m so glad to hear you both got a good night’s sleep! We will praise God continually for Ella and the work He is doing in her life and yours…what a privilege indeed!

Joan Odell on August 21st, 2007 at 9:26 am #

Thank our Dear Lord – With Him all things are possible!!! I am so happy about all of the things you have told us. What a special little girl and special parents. Josh, have you considered the ministry?????? The Lord has led all of us on the unique and special journey. I thank Him and the two of you for allowing us to walk with you and Ella. We love you, hugs and prayers continue. Cannot wait to see her moving around!!! Steve and Joan

Joel Snyder on August 21st, 2007 at 9:40 am #

Tina and Josh, Go Ella,Go Ella, Go Ella, I am on my way back to work and I guarntee the Dinos will be dancing at the Museum today. Taco,Mannny and Grandpa are praying for steady progress and hope for more good news as time goes on. We Love and Miss You!!!!!!!!!!!!!!!!! Go Ella,Go Ella.

Eusey Family on August 21st, 2007 at 9:41 am #

Our Sweet little miracle Ella! Go Ella, Go God, Go Dr. Kays, and Go Josh and Tina! Thank you for the update. We are privileged to be part of your journey. Ella’s color looks really good from the pictures –she seems to be taking well to her organ movement. ; )


The Eusey clan.

Eusey Family on August 21st, 2007 at 9:43 am #

PS Tina, you look beautiful!

Lisa (Ms. Texas) on August 21st, 2007 at 9:43 am #

Praise our awesome lord!! I am so happy for all! Go Ella GO! She is such a tough little angel!

Jenny Talbott on August 21st, 2007 at 9:58 am #

It’s all going to be okay… It’s all going to be okay… you get the idea… 🙂 Hang in there and give sweet Ella a loving gaze for me… I was happy to see the bow back on the headband…

Angie on August 21st, 2007 at 10:44 am #

I’m so glad Ella has remained stable through the night and the cannulas are coming out! Keep praying, keep hoping, keep believing! One day at a time, small baby steps! Can’t wait to see her tomorrow:). ~Nurse Angie

Char Snyder Jordan on August 21st, 2007 at 11:07 am #

Dear Little Family,
We are so very relieved to hear that progress is being made and we have more time to hope, pray and have faith. Hang In There everyone. We are praying for good things. lol Aunt Char and Jim

Terri Trainer on August 21st, 2007 at 11:20 am #

Isn’t God AWESOME!! T&J, so glad you were finally able to rest!!

Nurse Angie – You are one of the blessinings in this stressful situation. In addition to caring for precious Ella, you are an excellent source of information and comfort for my dear friends. Thank you for your ministry of nursing. It can’t be an easy job, but the love and care you pour into each day has an eternal impact on the babies and their parents. You are loved and appreciated!!

The Vogls on August 21st, 2007 at 11:37 am #

We are also relived to hear baby Ella doing well. All of you are in our prayers and thoughts.

Drew M on August 21st, 2007 at 2:34 pm #

‘A Privilege’ – what a neat doc. I love seeing her little froggy legs – reminds me of my daughter when she was in the NICU. Keep on hangin’ in there, stay positive and stay stong.

Jane Starks on August 21st, 2007 at 3:45 pm #

Dear Josh & Tina,
Just wanted to let you both know you are in our prayers each day as you bravely take on this most anxious time in your life. Your faith and strength in all of this is edifying and a source of hope to all who hear of your courage and joy in adversity. Baby Ella sure seems to be a fighter. It’s as if she is surrounded by God’s healing Angels who she sees and hears whisper in her ear the love and hopes and dreams you both have for her, to never give up.
I will be leaving for MD Anderson on Sunday to be with Georgie as he has to have surgery on Aug. 28th. Your trials truly help all of us go thru our worries with more faith and trust. May God continue to bless and keep your little family in His care.
Storming heaven with our prayers for you.
The Starks Family

Clay Brantley(Jordan's Dad) on August 21st, 2007 at 6:19 pm #

Josh and Tina,
I knew it would all work out. Julie and our family are praying for Ella and you guys. Just be patient with the upcoming healing process, Ella will do fine under Dr. Kays care. It is good to see that you guys have such a positive attitude and are allowing your faith to help you through this trying time. God has a plan and I know you will receive his blessings through the faith that you guys show to him. God Bless!

The Brantley Family

Veronica Johnson on August 21st, 2007 at 7:55 pm #

Hey Josh, Tina, and Ella!
We and our small group are praying like crazy. I’m so excited that Ella is in a stable place after the surgery…we’ll keep up the prayers though. Much, much love to you all.


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