We’re writing this post from a Starbucks while we wait for my mom to fly into the Gainesville airport. Tina and I have already had a fun filled weekend with our friends who came to visit from Orlando.

The Boemler-Wareing clan made the trek up to spend time with us and our baby girl. We had lunch together yesterday, then decided to go see the butterflies at the museum with the kids. Afterwards, we headed over to see our baby girl for a bit. After visiting with the Bun, we timed it right so we could all head over to the campus to see the bats leaving their house. This is something you need to see a couple times just to take in.

It was great to share our girl with the Boemler-Wareings, and we enjoyed having the company of friends who we love so much.

Speaking of loving so much, the one who we love more than we could have imagined is doing well. Her last blood gas looked good (pH=7.41, cO2=45, pO2=94) and overall Ella has not been very fussy.

One thing she has been doing though is gagging a lot. With the reduction of her sedation, she is feeling things a lot more, and one of those things she’s feeling is her ET tube (breathing tube). This has been incredibly hard for me to watch. Being with her when she goes through one of these moments just cranks up my anxiety.

She’s so close to having this tube removed, it’s just hard to see her go through all this right before that point. I just want ease her wrenching, but there’s nothing I can do but pat her and contain her softly.

As I was sitting here thinking about it, the Lord impressed upon my heart to trust Him even through these smaller things. To come through what we did three weeks ago, and then find myself so anxious at this moment seems silly. I know it’s not silly, because I know it’s very human to feel this way. But God wants us to rest in His peace and trust Him in ALL things, not just the big things.

We continue to pray for our baby girl’s strength and for the perfect timing of her extubation. Please pray that she won’t have to be re-intubated after they remove her tube. This does happen, and in some cases, even happens a few times before the baby can be fully off the vent. We would just prefer that she wouldn’t have to go through it, but we surrender to His sovereignty through these events no matter how it plays out.

Thank you Jesus for our beautiful baby girl.

UPDATE 12:15AM (EST): Ella has been running a slight fever for about the last 12 hours or so. They ran a CBC that came back ok, but she’s had the fever long enough to justify additional tests and start her on more antibiotics. Please pray for no infection this evening and that the antibiotics will resolve whatever may be causing her temperature.

First off, if you didn’t get a chance to see yesterday’s post, you’ll want to do so. There’s a video there of Tina holding Ella for the first time, and some pictures of me and my girl as well.

Let me take this moment to clarify what Tina said about us being “more emotional” yesterday =). Being the crazy emotional ball-baby that I am, I fully expected to cry my eyes out when I was able to hold Ella for the first time on Wednesday night. To my surprise, I didn’t. I think the moment was just so shocking, that the tears did not flow.

If I am totally honest, I still can’t believe that she’s my baby…MY BABY! What…huh??? That’s my kid I’m holding…no…wait…but…we tried for five years to have a baby and we weren’t able to, and now there’s this baby in the NICU and……what??? MY BABY!

It still hasn’t hit me. Which I think also tempered the tears.

Now, yesterday, after putting together the video, and Tina and I watched it the first time, WE BALLED OUR EYES OUT!!!! To come through all this and have that moment of indescribable joy was just so overwhelming. I think we just needed some time to take it in.

We keep watching the video and are just amazed how blessed we are to have come through to this point. There is no way to silence our Praise of our Heavenly Father for this journey…the WHOLE journey.

So, how is Ella doing today. She is doing GREAT!

The last couple days she had seemed to be a bit more fussy, even before and during the time we held her on Wednesday. Yesterday evening, her blood gas didn’t look that good either. Her blood was drawn right after she was upset, but I didn’t know what to really think of the numbers.

Well this morning, nurse Andrea let us know that her last blood gas was fabulous: pH=7.41, cO2=49, pO2=122. With those numbers, they weened her vent down to 10 breaths per minute! This is so good. If our baby girl takes 60 breaths per minute, 50 of those are on her own!

Every day is another day closer to her being extubated (breathing tube removed). I bet it happens sometime next week, but we’re content to wait on His perfect timing. She won’t be totally ventilator free once this happens, but she will have graduated to CPAP, a form of ventilation by forcing air through the nose.

Her feeds have also been bumped up to 20ccs per hour, and her output of those feeds have increased as well ;-).

They’re not going to ween any of her sedation meds over the weekend, but her Octreotide will probably be DC’d (discontinued). This is the medication that helped with Ella’s chylothorax (chest fluid issue).

Praising God for today and resting in His peace.

Psalm 37:3-4
3 Trust in the LORD and do good;
dwell in the land and enjoy safe pasture.

4 Delight yourself in the LORD
and he will give you the desires of your heart.

Ella Renae continued her good streak through the weekend and is doing really well today. She’s done a lot of solid sleeping over the last 48 hours, even in positions that we wouldn’t think she’d tolerate. Nurse Kelly has done a great job at making her comfortable on her right side, and on her belly with her head turned to the right! We were glad to see her sleeping so soundly in these orientations.

When we called today, Ella’s good behavior was confirmed with her blood gas numbers from 8am this morning: pH=7.42, cO2=52, pO2=106. The number of breaths on her vent was weened down to 30 breaths per minute.

What she said next took us a bit off guard. Ella had the two chest tubes in her back removed at 9am today! Uhhh…what? Yes, Dr. Kays looked her over and felt that is was time to do this because only the large tube in her left side was still draining a little.

We were both surprised to hear this, and the look on Tina’s face confirmed a bit of nervousness too. The last time Ella was pushed to only one chest tube, she went spiraling down a not so good path, but we don’t anticipate this happening this time.

This is a good thing though and a necessary step on the road to recovery. We can’t be sending our girl off to school with a couple chest tubes, even as cool as the other kids might think it is. Another big positive is that it reduces the number of areas for possible infection.

We hope to speak to Dr. Kays today and hear what his plan is for the coming days.

Standing next to our girl yesterday, looking at O2 saturations pegged at 100%, it really hit me how far she’s come. We praise our Heavenly Father for continuing to bless us, and for the strength and health He’s given Ella Renae. We don’t know for sure how long our journey will continue in Gainesville, but every day we are trusting our Lord to guide our path.

Thank you for walking, and for being on your knees with us through this journey.

p.s. Thanks go to teachers and all the children who helped make the “Love Letters for Ella” and “Baby Ella” poster. We have the letters at home and made a copy of the cover to put on her wall.

UPDATE (11:10pm EST) by Tina: We just came home from the hospital. Ella looked great.

While we were there, they took another blood gas. It was pH level=7.41, cO2=52, pO2=108. Dr. Kays had left orders that if her cO2 was over 50, to ween the vent. So, around 9pm tonight, the breaths per minute was weened to 26 breaths per minute.

They will take another blood gas around 4am and a chest x-ray in the morning. These two factors over the next couple of days will really demonstrate if the fluid issue has resolved.

We will rest tonight knowing that she is in His hands and look forward to getting an update in the morning. We hope and pray for the best!

Thank you for all your prayers!

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.

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.

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.

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

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.

Actually, I really think Mom knows best, but as you may be able to tell by the picture above, I think Ella has her daddy’s nose. Yup, that looks like a Josh schnoz to me. =)

The parents are feeling content this morning because Ella had another good night (that’s 4 in a row). She was stable and slept well.

Her gases looked good at 9:30am (pH=7.42, cO2=46, pO2=64), and her fluid output for the 24 hour period was positive too (urine=278ccs, chest fluid=55ccs).

Dr. Kays has not been in to see Ella yet, but we’re looking forward to hearing about her latest x-ray. Hopefully the reduction in chest fluid output (15ccs less than yesterday) is related to a true fluid reduction, as opposed to clogged catheters or fluid accumulating in other areas.

The nurse that has her today just finished giving her a sponge bath, and cleaned her neck and other crevasses that can harbor yeasty beasties. Ella tolerated the handling well which is such a good sign.

Our hearts pour out with gratitude to all of you, who continue on through this journey with us. The words that you share, and the prayers you lift up, render to us great strength and encouragement.

We are incredibly blessed by all the support.

Father, we thank you for another day with this beautiful girl. We praise you in all these things, and through this entire journey declare the love of our Lord Jesus. We know your are with us every step of the way. Bless those who have been touched by Ella’s story, and draw them closer to you. We affirm these words in your Holy name. Amen.