Posted (Tina) in All Posts on November-11-2007

Yes, we went on a last minute adventure last night and into this afternoon. Our friend, Kerri, has been staying with us and she was dying to see the ocean. I asked one of the nurses and she recommended Anna Maria Island, which is about a 3 hour drive south of Gainesville. We left last night, had a great dinner at a fresh seafood restaurant, slept overnight in the area, woke up and spent the morning on the beach.
The beach was just beautiful and the temperature was amazing. It was a nice change of scenery for us and gave us the refresh that we needed.
On the way back, we visited Ella. Thankfully, she had a better day.
Nurse Andrea tried feeding Ella orally for the first time late afternoon and once again today. She used a slow flow nipple. Ella seemed interested, but after she latched on and sucked a few times, she gagged. Although she did not take too well to it, Nurse Andrea mentioned that many babies don’t even show an interest. We’ll take that as a good sign and continue to try here and there.
After the increase in lasix yesterday, Ella’s saturations were high 90’s throughout the day, even hitting 100 every so often. We think the increased dieuretic helped to “dry” her out and thus her lungs are functioning better.
Having Kerri visit and see Ella in person brought a new perspective. Although Kerri has been watching the blog all along, the emotional impact was not quite there for her until she walked into the NICU and interacted with Ella.
I share that because I think that we are so in the midst of the journey, that we often times forget to step back and realize the intensity of what is going on. Don’t get me wrong, one of us cries almost every day. But we didn’t expect this experience to be so far reaching to others as well.
We know with every fiber in our beings, that God is sovereign and has a plan…down to the very last detail.
It has been amazing to meet Liz & Rusty Rich (Par’s parents) as well as another CDH father, Chris. His son Jonathan is struggling to hold on. Please pray for him too. And we would not have met these parents had Ella decided to rush through this experience.
Lord, we thank you for our little girl. Please continue to heal and strengthen her body. We pray specifically for her reflux issue. Lord, we want a clear answer on which path we need to take. Please give Dr. Kays wisdom and help us to listen to your voice. May the upper GI procedure this week be very telling about which direction we need to go for Ella. Along with Ella, we ask that you strengthen and heal Par and Jonathan. We ask all these things in Your Holy name, Amen.

Allison on November 11th, 2007 at 8:04 pm #

That is awesome that she is feeling better. I continue to pray for her continued strength (and yours too mom and dad) God bless you guys today and tonight. I will continue to lift you up in prayer. Allison, NC

Char Snyder Jordan on November 11th, 2007 at 9:23 pm #

What a refreshing break. It looks so cool. Was it humid? WE continue to pray for you and Ella, Par and Jonathan. You are some awsome parents. I always knew Tina would be great. She has always had a clear conscience when it comes to Heavenly Father and his desires for her life. We hold you all dearly in our hearts. LOL Aunt Char and Jim

Joel Snyder on November 11th, 2007 at 10:27 pm #

Ella, Sorry I didn’t catch up to you yesterday on the update. I was working with the camp-in and didn’t get home until this morning. It sounds like your Mom and Dad got a needed break and will be refreshed for the challanges that are ahead this week. I am praying that Dr.Kays can find the answers to help you move forward. I am also praying for your friends PAR and Johnathan. I will check on you tommorrow. Love, Grandpa!!!!!!!!!!!!

Tammy on November 12th, 2007 at 1:57 am #

Sweet Ella, you are taking baby steps to get where the Lord is leading you. My prayers are with all of you. May the Lord’s wisdom lead and comfort you.

Roxie (Adrienne's friend) on November 12th, 2007 at 5:44 am #

I’m constantly amazed at how God has blessed Dr. Kays and his staff with the knowledge, wisdom to use that knowledge properly and discernment in the midst of so many variables. I’m sure God has a special reward for them. I’m so glad that you guys were able to take some time away. I hope that you were refreshed and know that you can do it again at some point, you’ll know when. Just think maybe this time next year the Bun could go with you to the beach… maybe when you come back for a check up. You could start planning that little beach party now. Horray for Ella checking out that bottle…she’ll get it. We’ll be praying for the results of the GI test, that maybe Ella will be the exception to the rule and not need surgery for reflux, her O2 Sats, and her buddies Par and Johnathan.
Much love and paryers, Roxie

The Brittain Family on November 12th, 2007 at 6:01 am #

OK, little miss Ella, you had us fooled…we thought YOU went to the beach yesterday! One day soon, we think, but for now just do what you’re doing best: getting stronger. We thank God for how He has proven faithful to you from early on in your preborn days, to your birth, your time on ECMO, your repair, your many highs and lows, the fluid issue which felt like it would never end, but it did…He is good and the best part is that He’s never left your side even during your really hard times. We know He’s still there beside you. May He use you to strengthen and comfort your parents when they get weary and we will keep trusting Him and asking Him for your complete healing. We ask Him that you will be able to get off of CPAP successfully this week. If that is not best for you, we know He has His purpose, for you are in His hands! We know you’ll do great at practicing sucking AND swallowing and pray that God will provide creative and persistent nurses to help you along the way. We are so proud of you and your family and just want to tell you to keep up the great work! Do you like your new room? Is it fun to see the sun rising and setting? Wow, there’s a whole world out there, isn’t there? Go get it, girl!

Kristen on November 12th, 2007 at 7:37 am #

We can empathize that you are weary at times. This has been a journey much longer than the 100 or so days on this side of the womb. Still, we rejoice that you are sharing your experience with us. We are not tired of praying for you. We will not cease on your behalf. We serve a God who does everything in His own timing and we will be faithful as He reveals His plan for your family. You two are most amazing. And Ella, we are praying for your comfort especially regarding the reflux. Heartburn is miserable. Sweet heart you are such a gift.

Mike & Debi Van Eps on November 12th, 2007 at 9:36 am #

Good morning Josh: I just want to say that this difficult road the three of you are walking down is obviously a road that is leading you all closer to the Lord and a real dependence on Him and His word. Just hearing how you spent the day reading James for encouragment is proof that this process is God’s process for your lives, and the new relationship you will all come away with together will pale in comparison to the one you had when this journey began well over 100+ days ago. God has truly shaped you into the man of God and spiritual head of your home that He wants you to be through this trial. His word is truth Josh. You, and the two beautiful women God has placed in your life will continue to be a focus of prayer in the Van Eps house. God bless you all. Your brother in Him, Mike

Rachel & Ava on November 12th, 2007 at 9:45 am #

It is always amazing to think about all the amazing people that come into your life during such amazing struggle. I know my life and Ava’s have been eternally blessed by the people God brought to us during her incredibly hard time in the hospital. They are people I still have contact with and will always cherish in my life. Ella looks like she is doing better and i will continue to pray for her, you(tina & josh) and all the other families going through this same difficult time. Much love, Rachel and Ava

p.s. we have asked a few of our guardian angels to come that way to hang out with guys and help out.

Lesli Richards on November 12th, 2007 at 5:59 pm #

Luke came in to my room this morning and said “I’ve got great news, Mom! Ella’s so much better she went to the beach!” Guess we better work on the reading comprehension! Glad you got a few hours out in the sunshine. We are praying for Ella and her reflux. We love you! The Richards

Sheila on November 12th, 2007 at 7:34 pm #

I am PAR’s great aunt from N. C. Just wanted to let you know that we are praying for Ella as we pray for PAR. Glad to hear that you got some must needed R&R. Ella is a beautiful little girl. Blessings to you, Sheila

Loren L. on November 12th, 2007 at 7:54 pm #

Ella Ella Ella EH EH EH you can stand under my umbrElla. Little Miss Ella has had a great deal of excitement in her life moving around from place to place. Kicking the habbit off some meds. Looking for her place to call home and hang her hat! Ohh I do hope to see Ella go wireless and fly the coup! I know all in due time. But already so much has happened that too often I’m left wondering what happened to the time that passed by. All the love and devotion your parents the nurses and Dr. Kays give out will be absorb by the beautiful person that you will be.
Lots of love and prayers to stand next to you under your umbrElla,

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