Alrighty…one night down, two to go. Whoever prayed that Ella would sleep through the night last night, please offer that one up again. Ella slept SOLID through the night. She didn’t wake up until 7:15am, had a sip of juice, then zonked out again ’till Kelly woke her up at 9am. Thank God!

Ella had a great day overall too. She had a couple moments of fussiness when she didn’t get her way, but no real fits otherwise.

She had a solid OT and PT session. Ella’s getting closer to totally sitting up on her own. She had some support with only the Boppy today, and was able to maintain for a bit. This is so huge to see this progress. Krista, Kelly, and Ella have worked hard and that discipline is paying off.

We also received the scale we ordered for weighing the Bun. This should give us another indicator to see where Ella is from a fluid and growth standpoint.

Tina’s only been gone a day, but Bun and I are missing her tons. I know she’s enjoying her time with Terri which makes missing her a little easier.

Thank God for where he has us today. We are fortunate to be blessed with even the simple things…like heat, and shelter, when many in these times have lost so much. Lifting those up who have come upon hard times. May the Lord guide you through the valley, and may you seek his face during this time.

Lord, open our eyes to see those around us in need, and prompt us into action. May we be obedient to your Word and never pass by any opportunity to bless someone, and in return, be blessed ourselves. Amen

Matthew 25:34-40 (NIV)
“Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’

“The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’

Yup…Tina is in the BIG state of Texas vising her friend for the next 4 days. I can’t even begin to tell ya’ll just how stinkin’ excited I am for her. Tina deserves this break so much. I’m glad that she can take advantage of it.

My company has been great to let me telecommute while she’s away so I can switch shifts with Kelly in the morning and evening, without the overhead of a commute (Thanks L.S.!).

Surprisingly, Ella slept well through the night and to cap it off she had a good day. I can only hope and pray that she keeps this behavior up for the next few days as well.

With Ella’s good day comes a lot of good pictures. Below is the extensive collection for your viewing pleasure:

A year ago today Ella left the NICU at Shands. Click here to flash back a year ago and see how far Ella has come.

We’ve had quite a few trips back to the hospital since then, but at that point, she had officially graduated the NICU.

Today was filled with laziness and smiles. Sounds like a good day to me =).

Thanks for all the love, support, and for keeping up with the Bun.

“This is so hard. It’s just sooo hard.”

Above is the mantra I have been uttering to Tina for the last few weeks. She may even indicate that I’ve been saying it longer. I want to capture, on video, one of of the moments where Ella was retching real bad so you could see just how difficult it is to watch. It is hard to watch….so hard to watch.

I want Ella to be better….now. Enough with the patience, I want her better NOW. Fine, I’ll even trade. Make me sick. Let me be the one who retches all day. Let me be the one who chokes so hard on my own saliva and secretions that I start to pass out. Why have her go through so much of this? Hasn’t she been through enough?

There have been days where a wave of depression will just wash over me. I stare at the storm around me, and I’m just overwhelmed. The waves are HUGE, the lighting and thunder are INTENSE, and I ask myself how I’m going to make it through.

And then…
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perspective.

This is the face of a child who has gone through multiple surgeries and procedures. She has endured countless shots, blood draws, pokes and prods. This face…this child…perspective.

She has such an amazing spirit. She is such an incredible fighter. She had to be, or she wouldn’t be here….perspective.

But even greater perspective was found this morning. Tina and I started our day by listening to a sermon by Charles Stanley. We listened to him almost every day while we were in Florida, and the Lord worked through him to minister to our hearts so many times.

The sermon we listened to was titled: The Message in the Storm

I knew it was going to hit me when Dr. Stanley started out with the following introduction:

God teaches us to rivet our attention upon him, he teaches us to glue our focus on him, he teaches us to set our gaze upon him in stormy times, probably, in a more effective way than any other times in our life. Because listen, when the storm is so dark, and the winds are so fierce, and the waves are so high, and the waters so deep, and the boat is about to turn over, the only thing we have IS God.

That needs to be my focus. I know that when my eyes are fixed on God, his perfect peace is realized. I encountered this so many times when we were in Florida. Especially during the darkest times.

My hearts desire is to be obedient to him, trust in him, and be patient in HIS timing. The storm swirling around me can be incredibly distracting, but the more I look to him, the less I look at the storm.

Father, I surrender my heart to you. Let me keep my eyes fixed on you during these difficult times. May your hand continue to be on Ella’s life and may she be a testimony of your love and power to all who come to know her. In your Holy Name…amen.

If you’re going through a difficult time in your life, and you have a personal relationship with Christ, I would encourage you to listen to this message. It’s about 20 minutes long. You can download the MP3, or use the player below.

[mp3]/music/message_in_the_storm.mp3[/mp3]

Oh…and how was Ella today? She had a great day. She had a good PT and OT session and her clinical behavior overall was just positive. I’ll let the pictures below do the rest of the talking. I’ve already done enough of that myself. 😉

Yup…that’s right. We made a trip to the ER today.

As you’ve seen over the last few days, Ella has not been doing so hot. She’s been extra fussy, inconsolable, and not sleeping well at night.

We had thought the trend was related to something other than fluid, but the signs of having extra fluid on board were there. This is why we gave her the 1mg dose of Bumex on Wednesday, and then 2 additional .5mg doses, 1 on Thursday and the other Friday.

Ella still seemed to be having trouble today though, and with all that diuretic, we were surprised. After talking through all the symptoms with her pulmonologist, he suggested that we give her one more 1mg dose of the Bumex. We did, and we waited for a big diaper….but the big diaper didn’t come. 2 hours went by…still no big diaper.

If she’s not peeing out, this means she’s now probably too dry. We called the doc back, and considering we had to have Ella on 2 liters of O2 just to keep her saturating in the 90’s, and with her still be fussy, he now wanted us to go to the ER to have labs drawn and a chest x-ray.

So we packed up the car, and even threw in a nights worth of clothes and sleeping stuff (i.e. blow up mattress, etc) just in case we were admitted.

Well as soon as we got to our room in the ER, Ella took a little nap, woke up, and started behaving more like herself. We weaned her down to 1.5 liters of O2, and she maintained her saturations ok.

The wanted to draw blood for a BMP and they decided to place an IV at the same time. Last time we were in the ER, they tried 4 (maybe 5) times to place an IV, but it didn’t happen. This time they got it on the first try! So glad it worked out this way.

After the IV, Ella went down for a chest x-ray. After she returned we had a great time just playing and tickling her. She was behaving so well, which was very surprising.

The docs came in with the results from the BPM and x-ray. Her lungs look no different than her last x-ray, which is good. Her electrolytes looked alright overall, but her BUN was pretty high…it came in at 38. The higher that number, the more “dry” Ella is. Ella seems to do well somewhere in the high 20’s, but this was on the high side for her.

The pulmonologist wanted to give her a dose of IV fluids then have us hold her Aldactized (thiazide diureted) for the next 48 hours. We didn’t feel comfortable giving Ella a bolus of fluids because the last time we did, it took almost 2 days to get her back into a “good” place. Plus, she wasn’t showing any secondary signs of major dehydration (i.e. good cap refill, tears when she cried, etc.). We compromised and said that we would hold off on giving any diuretics for the next 48 hours.

Everyone was all good with this, so they sent us home. SO glad we were not admitted to the hospital.

At this moment, Ella is sleeping soundly, saturating 100, and is down to 750mls of O2! Praying that she sleeps through the night because she hasn’t for the last few nights.

Sleep would be good…which is what I’m off to do now. Thanks for all the continued prayers, love, and support.

Psalm 33:20-22 (New Living Translation)
We put our hope in the Lord.
He is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
Let your unfailing love surround us, Lord,
for our hope is in you alone.

Ella had a great day. She had a great workout with the physical therapist and even spent 11 solid minutes doing tummy time! This is huge considering she normally does about half that amount.

She also ate a fair amount of apples, albeit off of her binky instead of a spoon. This is a bit of regression, but we figure getting the food in is better than not at all.

Thanks to all of you for all the diaper rash advise. All you moms and grandmothers are so cute with your home remedies. Fortunately, this doesn’t seem to be a yeasty rash, so the Desitin has helped a lot over the last 24+ hours. We’ve been slathering her up every chance we get, and with that, her pain and the rash have pretty much gone away.

And on another positive note, Ella’s “Alma Matter” defeated the Sooners to win the BCS Championship. CONGRATULATIONS GATOR FANS! Yes, the Gator Nation has done it again and their football team is the national champions. I was not able to watch the entire game, but I picked it up early in the 3rd quarter. What an amazing EXCITING game and what a testimony given by the quarterback Tim Tebow.

Not only is he an amazing quarterback, but an incredible individual as well. The announcers talked about his parents work as missionaries and Tim’s contributions as well. You can also see that he’s not ashamed or afraid to share about his relationship with Christ. He did so by the scripture he had referenced on his EyeBlack (John 3:16) which was seen throughout the broadcast, plus giving thanks to his Savior for the game.

So we stand before Our Lord Jesus and thank him for the “game” he has us in as well. Even though times can be incredibly difficult, we do our best to seek his face, and trust him every day for peace and wisdom through the fire of life.

John 3:16
“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

I had the day off work so I was in charge of taking care of the Bun. Let’s be clear though: Ella is the one who is actually in charge. =)

Ella had a great day. She slept solid through the night and her numbers looked good this morning. She’s still on a liter of O2, and not quite saturating where she was before, but at least she’s going the right direction. Plus, she’s clinically behaving great.

The only time she gave me any grief today was when I went to feed her some apples. Man, she just does NOT want to do it. She started melting down, and it was a “my way or the highway” melt down. She wasn’t in pain at all, it was just total drama. So I bumped up her O2 and let her keep crying it out. After about 5 minutes, I gave her the binky and frog to calm her down. She did, but then I tried again a minute later. Another meltdown. I tried again for another 5 minutes with minimal success.

There were a few times there where I just had to turn my face away and laugh a bit, because she was so playing me. It was all about her getting her way. OH MAN…the fun times ahead we have to look forward to ;-).

I was able to get a couple cute videos of her today. We did have a good time together.

Praise to our Heavenly Father for his continual blessings, provisions, and our sweet Ella Renae!

Ella’s doing ok. Were watching her closely though. Enjoy the slideshow above of her grabbing her tongue =). We’ll update with more details later.