Posted (Tina) in All Posts on October-10-2007

Josh and I are relishing another great evening for Ella bun.

Nurse Michelle is taking care of Ella tonight, so we are praying that she behaves and can maintain throughout the night.

Dr. Kays stopped by and we had a chance to hear from him directly. Nothing different than what I reported in the last post, but it was nice to catch up face-to-face.

We are just so thankful for the good days. We are looking forward to the day when we can hold Ella, help feed her and then someday take her home with us. One thing is for sure: Ella is certainly fighting the good fight.

The truth of the scripture below hit home this morning.

Deuteronomy 32:3-4
3 I will proclaim the name of the LORD.
Oh, praise the greatness of our God!

4 He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.

When we begin to see things from God’s perspective, we never complain. The more we know Him and His ways, the more we have peace with all the circumstances in our lives.

God’s goal is to have intimacy with each of us and He knows exactly how to orchestrate the details of our lives to draw us closer to Him.

Even more than that, He is a faithful God who only wants the best for us. Many times we mess it up by trying to orchestrate things on our own. Yet if we trust and obey even through the valleys, we will always receive His best.

The miracle of Ella Renae is already such a clear demonstration of His best – – for us and for all of you that have been touched and blessed by her story.

Lord, we couldn’t have thought up such an experience. We praise you and thank you for bringing Ella Renae into our lives.

Posted (jooosh) in All Posts on October-10-2007

Oh how well our little Bun continues to do! We called this morning and heard the familiar voice of Nurse Angie. So comforting to know she’s there with our precious girl.

Angie said that Ella is behaving herself this morning. Earlier, she was awake and looking around at her hanging monkey. A little later she was put on her belly and she tolerated it well. She was given a small dose of fentanyl to ease the transition of being flipped with all those chest tubes.

From a numbers standpoint, Ella is doing great. Her saturations are pegging the 100% mark, and her blood gases at 8am this morning were just beautiful: pH=7.42, cO2=42, pO2=103. No major vent changes other then reducing her nitric oxide (iNOS) down to 1 in preparation for taking her of it completely.

There has been no output from her chest tubes so far today, and she only had 19ccs of total output yesterday. So good to see this go down and have Ella’s stats stay high! She still looks edemic around her head, neck, and chest, but it doesn’t look like it’s increasing.

I think our girl took the gold medal in the pee Olympics yesterday with a total urine output of 348ccs! This is so good for her to be putting out all this fluid. They also removed her foley catheter because she was peeing around it so much. Oh, and let’s not just leave it at that bodily function alone. She had herself some good poops too! =)

What goes in, must come out, and they are now giving Ella a total of 10ccs per hour of her food. What’s also good to hear is that with this volume she’s not been spitting up at all. Here’s hoping she continues this track!

Dr. Kays is back in town. We’ve not heard any word from him yet, but hope to speak to him today to discuss the latest plans.

Some of you have asked if we’ve been able to hold Ella. We haven’t yet, but we look forward to when we can!

The reason we haven’t been able to sooner is due to the multiple chest tubes in her body. The current ventilator she’s on would allow us to, but with all the chest tubes connected, it’s just not something they will permit at this time. I could also only imagine accidentally tugging or pushing one of her larger chest tubes, possibly causing her some pain. I wouldn’t want to risk it!

For these reasons we are willing to be patient for that sweet moment ahead. Be assured that you will all be there with us when that day comes =).

Thank you for your continued thoughts and prayers. May the peace of our Lord Jesus Christ be with all of you today.

UPDATE (12:45PM EST) by Tina: Dr. Kays just called with an update. He is pleased with Ella’s progress. He’s decided to turn off the nitric oxide. So far, she seems to be tolerating that well. Also, he is writing orders to slowly ween her off of the steroids. He decided to ween the vent to 50 breaths per minute. His plan is to get her off the nitric oxide and steroids completely, continue to increase the feedings and ween the vent slowly. This will force Ella to do more of the breathing on her own, strengthening her lungs.

I asked about chest tubes. Quickly, he stated that since the chest tubes are still draining, he has no plans to remove them anytime soon. Instead he wants her to get stronger and for the fluid to reduce even more before we think about removing any of the chest tubes.

Dr. Kays noted that her chest x-ray looked good, although her left side didn’t look quite as good as when he left town. I asked about her spending time on her belly. He reaffirmed that this is important for Ella’s care and will help both of her lungs expand and strengthen. I let him know that the nurses have not been flipping Ella regularly (it seemed like it was more of a verbal suggestion last week).

For example, today is the first day she has been on her belly since Nurse Kelly took care of her a few days ago. And I think that some of the nurses that do not take care of Ella on a regular basis are a bit more hesitant to flip her, especially when she makes a big fuss about it. Dr. Kays let me know that he thinks it is important enough to write clear orders for this to happen and to give doses of fetanyl if Ella needs it during the transition.

Thank you Lord for this great news from Dr. Kays. May you continue to work out all the details in your timing.

We also want to pray specifically for Ella’s strength and for no infection from the chest tubes that remain in her body.

We thank you for how far you’ve brought us along to this point and ask for your continued love and guidance through this experience.

Please continue to provide wisdom and discernment to Dr. Kays.

Help us to continue to seek you and be obedient.

In His precious name, Amen.