Ella Renae continues to do well today. They increased her feeds again and are slowly weeing her other meds where they can.

Fluid output still looks good, with a new urine record of 369ccs! Only 18ccs from her chest tubes for the 24 hour period. We really want to see this number get down to zero which should encourage Dr. Kays to pull her chest tubes.

The Bun was having a bit of a cranky moment during her blood gas this morning, which is why her numbers weren’t that great: pH=7.31, cO2=57, pO2=43. We’re not too concerned about it though and her 2pm blood gas will hopefully confirm that.

With the current progress Ella is making, it doesn’t look like we’ll be home for Thanksgiving, but we hope to make it back for Christmas. His timing is perfect though, and we continue to trust in His plan.

Tina and I are anticipating the arrival of Ella’s uncle and cousin this afternoon. It’ll be nice to have some family close by. =)

Thanks for the continued prayer and for keeping up with our little girl. Looking forward to celebrating her beautiful life with all of you in person some day!

UPDATE (12:00am EST) by Tina: Ella had a good day. Her blood gas this morning was not that good, but did end up stabilizing throughout the day during the next two blood gases.

They increased Ella’s feedings to 12ccs per hour, which is great. At 10pm, her chest tube output was 17ccs for the day so far. Her urine output was already 272 ccs! Maybe she will break another record!

They decreased her vent down to 40 breaths per minute at 40% oxygen. Ella seems to be doing well with it and keeping stable through all the changes.

Uncle Rick and Cousin Megan came into town tonight. It has been nice to see them and hang out.

We are praying for a stable night and more fluid reduction for Ella. She seems to be in a holding pattern where she is draining about 15-30ccs per day out of her chest tubes. The good news is that her edema seems to be reducing slowly (all that urine output!).

Please pray specifically that her fluid issue will resolve and for her to continue to take baby steps each day in the right direction.

Thank you for joining us on the journey.

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.

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.

Yes, Ella turned 11 weeks old today! Wow…time has flown and yet it has gone slow at the same time.

Two of my co-workers, Katy and Pam, came to Gainesville tonight. We had a great time hanging out at dinner and then visiting with Ella. It was so nice to see familiar faces. She gave a couple of grins to each of them, and then peacefully fell asleep after all the interaction.

I am pleased to report that Ella had another uneventful day which is great news. Her two blood gases today have been good. The vent was weened slightly at 39% oxygen and 58 breaths per minute. As of 10pm, her chest tube fluid output was 8ccs. Also, her urine output was already 220. We hope that she has a restful night and can remain stable.

We are still waiting for Dr. Kays to come back in town. We are anxious to hear what he has to say about her progress and what steps he wants to try next. We think he might want to remove one of the chest tubes, to see if Ella can tolerate it (she has 3 total; 2 on the left and 1 on the right).

Through all the curiosity of what will happen next, we know that He is ultimately in control and that His timing is perfect.

Lord, we praise you and thank you for our beautiful little girl. We feel so blessed to be her parents and to be directly involved in your work. Help us to draw near to you in this time and become more familiar with your ways.

We lift up Dr. Kays and staff to you and ask that you provide wisdom and discernment for the next steps regarding Ella’s care.

Lord, give us the strength to continue on this journey each day and be a testimony to you and your love for us. Help us to be joyful in hope, patient in affliction and faithful in prayer (Romans 12:12).

We thank you for all the wonderful support via our family and friends. Please bless everyone touched by Ella’s story and use this experience to bring glory to your name. Amen.

We don’t want to take this “routine” for granted, but Ella is still trekking on a good path. She did get fussy a couple times last night for Nurse Janet, but she was able to calm our girl down without using any fentanyl (just a boost of oxygen and a calming touch).

Ella was wide awake from 5am through her morning assessment at 8am. She behaved very well for the day nurse on shift during this time, and she’s continuing to do so today.

Her stats continue the positive trend too. Her saturations are hovering around 100% with blood gas numbers that looked like this at 6am: pH=7.42, cO2=44, pO2=89. Ella’s maintaining good urine output (275ccs) and her chest tubes only put out a total of 23ccs for the 24 hour period.

We didn’t get any official word on her x-ray yesterday, but there is no x-ray scheduled for today. So, I’m assuming they may not be too concerned considering our baby girl’s overall good behavior.

Her feeds have been bumped up again to 9ccs per hour. With this increase, they were able to reduce some of the other nutrition she’s been receiving intravenously.

They also discontinued one of her antibiotics. She still has a couple others going through her system though.

No sign of Dr. Kays today, so maybe he’s out for one more day. We’re looking forward to getting his thoughts upon his return.

Our journey is still far from over, but we will relish these quiet times.

Thank you Lord for your peace.

Yep…Ella is still smilin’ tonight. She had a good, uneventful day.

Her food was increased to 8ccs of Portagen per hour. Her latest blood gas was a pH level of 7.39, cO2=46, pO2=89. Because of this, they weened the vent a little bit more to 62 breaths per minute and 42% oxygen.

As of 10pm, the chest tube output so far today has been 18ccs. We have not heard anything more on her chest x-ray, but are hoping to hear an update from Dr. Kays. We think he is supposed to be back in town tomorrow.

Sweet dreams Ella bun…

Psalm 9:1-2
1 I will praise you, Lord, with all my heart;
I will tell of all the marvelous things you have done.
2 I will be filled with joy because of you.
I will sing praises to your name, O Most High.

I can’t even imagine life without that smile. We’ve missed seeing it over the last few weeks, but it’s back, and cuter than ever.

I have never known love like I love my baby girl. Don’t get me wrong, I love my wife, but this is just….it’s hard to even describe. I’m sure other parents can relate.

What gets me though, is that I’ve not been able to fully “drink” her in. I think there’s an aspect of my own self-preservation that has not allowed me to fully accept that she’s MY baby girl. And yet I love her THIS MUCH!

To be able to hold her, pat her on the back, have her fall asleep on me…how much sweeter can it get!

What blows my mind too is that our God relates to us this way. He calls us His children:

Romans 8:15-17
15 So you have not received a spirit that makes you fearful slaves. Instead, you received God’s Spirit when he adopted you as his own children. Now we call him, “Abba, Father.” 16 For his Spirit joins with our spirit to affirm that we are God’s children. 17 And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering.

He desires that kind of relationship. What an awesome visual of His love for us.

Being Ella Renae’s dad has given me even more appreciation for our Heavenly Father’s love for His children. Praise God that He is not some out there entity floating in space, but instead, is our Father who desires a personal relationship with each of His children.

Thank you Lord for loving us as a Father loves a child. Thank for creating us uniquely in your image, and for knowing us better than we know ourselves! You even know the number of hairs on our head! (Luke 12:7) Your magnitude is beyond our mind’s comprehension (you spoke the universe into existence!), and yet You love each man, woman, and child and desire a personal relationship with them.

We praise you Lord for your nature, and for allowing your Son to be the ultimate sacrifice, cleansing us of our sins, so that we may come into your presence and be considered worthy. Worthy, not by any works we could perform, but by Christ’s blood shed on the cross (Romans 3:21-28).

Lord, let us look to you for guidance and wisdom in all that we do. Let our lives be a living testimony unto you. We praise you Lord, in Jesus name. Amen.

Ella continues to do well (Thank you Jesus!). Her saturations continue to hover around the 100% mark, and her blood gas this morning looked great too (pH=7.44, cO2=33, pO2=115). Her urine output is still cranking along (310ccs), and chest fluid output continues to drop (19ccs).
 
All these things as well as Ella’s overall mood are indicators that her fluid output looks to be resolving. We’ve not received any definitive feedback on her x-ray today, but we’re expecting positive news.
 
Please continue to pray for our baby girl. It looks like we may be finally getting over the fluid issue hurdle, but there are plenty more hurdles ahead. Thank you for the continued support and prayers. Great peace and strength is delivered through them.
 
God Bless

Ella Bun is feeling so much better than she did a week ago.

As of 9pm tonight, her chest tubes had only drained 5ccs total! And she looks good! All signs are pointing to the idea that maybe her fluid issue is resolving. We won’t know for sure until Dr. Kays returns and we hear the official word from him.

Nurse Janet is watching her tonight, so the parents will sleep well! We pray that her stats remain stable, her blood gases are good and that she can have a great chest x-ray in the morning.

Thank you Lord for this little baby girl. She is such a blessing. We praise your name in the midst of the storm.

This is another day that the Lord has made. We will rejoice and be glad in it.

It is amazing to look back a week ago and see where our baby girl has been, and where she is now. Seven days ago Ella was dancing on the edge of a razor, looking over the edge of a cliff, or flying only 100 feet above the ground. Whatever analogy you use, they still represent the same perspective: Our baby girl was not in a good place medically speaking.

BUT

From a spiritual perspective, God had us right where He wanted us. There was no other hope except in our Saviour. Our only choice was to look to Him and trust in Him completely. We praise God for drawing us so close to Him during that time, and for continuing to do so this week.

What a difference this week has made! Ella has continued her stable track forward over the last 6 days. She had another uneventful, restful night.

Her saturations have been in the high 90’s / 100’s and her blood gas at 11am this morning looked real good: pH=7.49, cO2=39, pO2=109

Her Fi02 has stayed the same over the last couple days (44%). The only vent change made was to reduce her breaths per minute down to 68.

Our girl is creating a lot of secretions in her lungs which is requiring more suctioning. The good news is the nurse has been able to perform one quick pass on Ella without even waking her up!

Ella’s food has increased another cc per hour, up to 7ccs now. She’s still peeing great (270ccs last night, woo hoo!) and her chest fluid output has been going down, hopefully for good (33ccs yesterday).

Dr. Kays has been out of town for the last couple days so no big changes should be taking place. We’re all good with the sloooow steps, but in the right direction.

Tina and I have had a restful weekend so far. We’re looking forward to having some of Tina’s co-workers visit Tuesaday night, and we’re excited to have Uncle Rick and Cousin Megan joining us for a few days later in the week.

We thank the Lord for His continuous presence. May his Grace, Mercy, and Love be with all of you.

The bun has shifted over to another room in the NICU 3. The girl is not even quite 11 weeks old, and she’s already starting to take after her parents. For those of you who don’t know us that well, Tina and I have moved 14 times in 12 years. With that many moves under our belt, I believe we can now consider it a hobby. 😉
 
Our dear Ella has had another good day! She was on her tummy and sleeping soundly when we arrived at her bedside. Her stats look good too with oxygen saturations remaining close to 100% and a blood gas this afternoon of: pH=7.39, cO2=46, pO2=78.
 
One of the RT’s who had been watching the progress of her chest x-rays said that it looked even better today. Considering how little her total chest fluid output was for yesterday, that’s good news!
 
Ella was turned on her back during shift change this evening, and even right after the turn her face didn’t look as puffy as before. I think with all that wonderful urine output she’s been having, she’s starting to lose some of that edema (yay!).
 
Tina and I are enjoying our time with our baby girl this evening. We praise God for where Has us today, and we’ll continue to rest in Him, and trust in Him for Ella’s future steps.
 
Have a good night all.