Our little bun had a pretty good night. Her stats were stable and she behaved herself.

Dr. Kays called this morning to bring us up to date. He confirmed that she is making forward progress, albeit slowly. He wanted to replace the right chest tube again in the hopes of draining more fluid.

I asked if this will be our course for now, and he confirmed that it’s one of two options. We either continue what we have been doing, using the chest tubes to drain her fluid and wait on the body to get better, or pursue more aggressive steps with surgery.

As much as we would like to see her get better quickly (Dr. Kays would like this too!), we’re content to be patient and let Ella’s body do what it needs to do. She is taking baby steps forward again, and it’s evident in her latest chest x-ray as well.

Dr. Kays also indicated that he might discontinue her subcutaneous (anti-coagulation) shots in the next few days. We’re all for her not getting shots, so this would be good news.

We followed up again with a call to the nurse this afternoon and the chest tube replacement went well. Ella has drained another 32cc from her right side. Her blood gas this afternoon looked good too (cO2=57, pO2=118).

Ella is now getting a continuous feed of Portagen into her stomach (1cc / hour), up from 1cc every three hours. This is good news too because he feels this is not contributing to her fluid issue, and she’s tolerated the digestion process well.

Tina and I will be heading in this evening after work to see our baby girl. Nurse Michelle is on tonight which makes for a good time as well.

A passage of Scripture that spoke to Tina and I this morning while listening to a message from Charles Stanley:

Isaiah 41:9-13

9 I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.

10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

11 “All who rage against you
will surely be ashamed and disgraced;
those who oppose you
will be as nothing and perish.

12 Though you search for your enemies,
you will not find them.
Those who wage war against you
will be as nothing at all.

13 For I am the LORD, your God,
who takes hold of your right hand
and says to you, Do not fear;
I will help you.

…but her mom and dad snuck off to a Bed & Breakfast yesterday. It was a last minute deal, but Tina and I decided to escape the Gator fever.
 
We found a place right off the Atlantic coast out in Flagler. It’s a two hour drive from Gainesville and we headed out right after we saw Ella in the afternoon. Timed it just right too, because we missed all the football traffic. =)
 
It was a nice drive. Felt so good just to see some different scenery. I was beginning to feel like we had been living on an island for the last eight weeks, so it was nice to confirm that we weren’t.
 
We arrived at the B&B around 7:30pm, just when the sun was setting. We checked in, and headed down to the boardwalk and walked to a restaurant. Dinner was a bit disappointing, but the walk back to the B&B wasn’t.
 
There was a monster thunderstorm* right out over the ocean. Something you rarely see out in Southern California, but I’m sure it’s a regular event here. It was awesome. A gorgeous clear night, with the waves crashing, stars out above us, and lightening flashing in the distance. What an incredible display of God’s creation. We took our time walking back, barefoot on the beach, and just soaked in the moment.
 
The next morning, after breakfast, we headed north on highway 1 to St. Augustine. What a quaint town. A lot of history too considering it’s the oldest city in the country. We walked around looking at all the different shops and historic buildings.
 
We were then lured into Pizza Time, a NY style pizza place, where we enjoyed the best pizza we had ever had! Seriously, pizza is my favorite food, and I tend to be picky about it (not that I’ve ever turned down a slice ;-)), but this pie was absolutely tasty. If you’re ever is St. Augustine, you gotta give it a try.
 
After lunch, we walked around a bit more and took in the scenery. We then decided to head back to good ol’ Gainesville and check up on our baby girl.
 

 
Ella had a good day overall. She has been a lot more comfortable since they replaced her right chest tube yesterday. Her stats are looking better. Her blood gases at noon were: cO2=57, pO2=107. Her pO2 was down a bit this evening at 8pm (68), but Michelle thinks this was attributed to an excess of secretions in her chest at the time.
 
She’s only had 23cc of chest fluid output for the day. We like this to be more because her chest x-ray is still showing up hazy, indicating a fair amount of fluid. On the positive side, Ella’s urine output has increased significantly. We hope this is related to the additional diuretics she’s received and that it keeps up. This is the right way for her body to process excess fluids instead of relying on chest tubes.
 
Ella is in good hands tonight with nurse Michelle. We’re able to rest easier knowing that the nurse on duty truly cares for our baby girl.
 
Please continue to pray for Ella’s fluid issue. We are trusting our Lord that in His time and in His way, He will take care of it. This has been an incredible process, of learning to give over to God the things we cannot control. It can be very emotional, and there’s no reason that it shouldn’t be! But there is an incredible rainfall of peace when we put our trust in Jesus.
 
Heavenly Father, we praise your for your promises that you deliver through your Holy Word. Continue to write on our hearts, these words you have instilled in our minds. Praise you Lord for your peace, grace, mercy, and sovereignty in all things. You are Almighty God, and we surrender to you, praying that you may be glorified through all these circumstances. It is in Jesus name that we ask these things. Amen.
 
 
*Below is a slideshow and a short video of a lightening strike we saw on the beach last night. There are a total of 23 separate frames that make up the slideshow. It really shows how incredible the strike was, and how much occurs in less than a second!. Wow..wow…WOW!

Tina and I just arrived home from the hospital (2am EST). Ella is doing ok tonight. She looked a bit more puffy in the face then yesterday. Her stats are in the acceptable range (cO2=66, pO2=63), but not great. These were taken right after she was fussing though, so maybe they’ll be better at her 4am gas this morning.

Dr. Kays did reduce the settings on the ventilator which could have also contributed to the so-so numbers. Her FiO2 is at 40% and her assisted breaths per min is 35.

Her chest tubes have stopped draining all together. I would take this as good news if her head wasn’t so swollen. We’ll see what tomorrow brings though.

This has been a tough week emotionally. Thank God Tina and I have each other to lean on. There are times when one of us is able to be strong for the other. God bless my wife for being the stronger one this week.

Your prayers connect the truth we know about Him in our minds, to our hearts.

Psalm 119:28
28 My soul is weary with sorrow; strengthen me according to your word.

It’s been more than seven weeks since we arrived in Gainesville. It feels like a lot longer though. We’re missing Colorado, both for the weather, and the familiar places. We’re trying to rest where we are, but are growing weary, and we still have a ways to go.
 
Ella continues her good streak. Her gases looked good this morning (cO2=50, pO2=143) and her stats are stable. Her fluids are still high for where we want them to be (115), but some of that could be attributed to her being moved around so much. With her being turned side-to-side more fluid is expected to come out. We’re hoping that her fluid progress has plateaued for that reason, and not another.
 
Ella still has a lot of hurdles to overcome. We thank God for how far He has brought us, but the journey may only be half done. We still need her chest fluid output to drop to zero before her chest tubes can be removed. Then, a slow and steady weaning process of the ventilator and meds need to occur. This is the point where Ella needs to breathe on her own.
 
After success in this, she will then move to the NICU II where we will work through any feeding issues, and prep her for the journey home. With all this remaining to do, we’re still going to be here awhile. Another 6 to 8 weeks? Nothing is for sure, but I’d like us to be home for Thanksgiving.
 
BUT…
 
We know that God’s timing is perfect, and we continue to rest in His sovereign plan for our lives. Not our will Father, but yours be done.
 
Please continue to pray for our baby girl, the nurses that take care of her, and for Dr. Kays. God has blessed us with incredible hope through these individuals and I pray that the Lord will be glorified through them and our baby girl.
 
God’s peace and love to all.
 
P.S. Tina is starting back to work today. Having the “Fab Four” take care of our baby girl as much as they have, has enabled us to focus on other things that need to be done. Tina and I are both blessed to have the ability to work remotely, and we thank our employers for providing us the opportunity.

Ms. Ella has found her gator spirit in the form of a bear. Nurse Michelle presented our baby girl with this stuffed animal, as well as a Gator blanket, to confirm once and for all that Ella is a true Gator Girl.

I know our friends just north of us would like to think otherwise, but when you’re born in Gainesville, Florida, you don’t have any other choice. And yes, the Gators did triumph over the Troy Trojans last night while Ella was holding her bear. =)

Ella remained stable throughout the night. Her blood gases looked good this morning (cO2=49, pO2=121). The fluid output in her chest appears to have gone back up a bit though from 80 on Friday to 127 yesterday.

This is not the direction we want her fluids going. I’m holding out for a clerical error myself, but we’ll see what tomorrows output is. We’ve not had a chance to talk to Dr. Kays about it either, so we are curious about his thoughts on the matter.

Yes, it is Sunday, and Tina and I have enjoyed listening to sermons by Dr. Charles Stanley. We’ve downloaded a series of podcasts and noticed that there we some archives that we hadn’t listened to.

The message for July 8th was titled “How to Listen to the Word of God”. This is the message we chose to watch today. The sermon itself had an incredible impact, but the story that we viewed at the end really touched home.

The 7 minute video below is titled:

LIFE PRINCIPLE 18
As children of a Sovereign God,
we are never victims of our circumstances.

It spoke to our hearts so deeply, and we know it was no coincidence that God had us view this particular message today.

Listen closely to the words of Dr. Stanley at the end. These words resonated so strongly in our spirits that it brought us both to tears. Praise God for speaking through Dr. Stanley.

Click here to view the entire sermon titled “How to Listen to the Word of God”

Overall, Ella continues with her forward progress. Her blood gases look good (cO2=50, pO2=128) and her stats have been stable.

Dr. Kays also reduced the pressures on the vent and reduced her assisted breaths per minute down to 36. Ella takes about 60 breaths per min while sleeping, so 24 of those she does on her own. As she continues to improve, they’ll be able to reduce the assisted breaths, pressures, and amount of oxygen the ventilator gives her.

Ella also had her octreotide increased from 7mL to 10mL. We pray this will bump her fluids down again like it did before, hopefully totally eliminating her output.

We were happy to find nurse Janet taking the night shift. We’ve spent the last few hours with her. It’s 10:10pm here and we’ve not had dinner yet, so going to keep the post short tonight.

God Bless

Ella knocked her stats out of the park again this morning. Her blood gases were fantastic (cO2=49, pO2=215!). Dr. Kays has weened her down on the vent even more now, reducing the oxygen input to 45%.

Her total fluid output is down another 40cc’s. She was at 145 yesterday, and 105 today. This number still needs to reduce some more before her chest tubes can be removed, but our baby girl is on the right track.

Nurse Andrea is on today. She hadn’t been with Ella since last week, so seeing how well Ella is doing today was a pleasant surprise for her.

I keep teasing about taking our baby girl home. Just snatching her up and running away with her. I was ready yesterday, but God is not through with us being out here yet.

Please pray that Ella’s fluids to continue to reduce and for the Lord’s will to be done in our lives in the coming weeks. Thanks.

BTW: Uga has come home. Looks like he was lost under some of the blankets behind Ella’s bed. I know the Richard’s will be resting easier now. 😉

Wow…Ella is still rockin’ the casbah =). We were able to enjoy a couple hours of her being awake tonight. Tina and nurse Michelle gave her a little bath, and Ella did so well with the whole experience.

Her stats stayed strong throughout the day. The last blood gas at 10pm was solid (cO2=43, pO2=154). If her next blood gas is this good in the morning, she’ll probably be weened down on the ventilator again. Slow and steady baby girl, slow and steady.

Some of you were curious about her weight. Ella has gained 1lb 1oz since her birth! She is now 6lbs 7oz. Still need to fatten her up though.

The swelling in her head has definitely gone down along with the rest of her body. If she keeps on this track the next few days, they’ll consider removing her chest tubes. The SVC procedure has also been delayed. It will be re-evaluated next week to determine if it’s necessary. I’m betting they don’t do it though because the octreotide is working real well.

The dopamine and albumen have been removed from her regiment of meds. She still has quite a few other meds going in, but at least we’re moving in the right direction.

Nurse Michelle also told us that our other favorite nurses will be taking care of Ella the next couple days. It’s so nice to have the “Fab Four” taking care of our little girl. It really gives us both peace of mind. There is genuine compassion and love that comes from these ladies. Michelle, Angie, Andrea, and Janet really make a difference to us and Ella. They are such wonderful nurses and we thank God for them!

The continued prayers are greatly appreciated. So much grace and peace is delivered through them. God bless you all.

Numbers 6:24-26 (NKJV)
24 “The LORD bless you and keep you;
25 The LORD make His face shine upon you,
    And be gracious to you;
26 The LORD lift up His countenance upon you,
    And give you peace.”’

Not that I had any doubt about Ella being Tina’s daughter (you don’t see many “maternity” tests beyond what I’ve witnessed), but I’m not the one who sleeps with his mouth open ;-). I’ve teased Tina about watching a spider spin a web in her mouth, catch a few flies, and close up shop before she wakes up. They’re both real cute when they do it though.

So…how is Ella doing?

Ella looks AWESOME! THANK YOU LORD! She has been rockin’ stable on the standard vent. Her absolute cuteness has maintained as well =). We’re both on a three day high of good Ella progress. We’d be happy if the rest of our days here continued in the same vein, but we have to expect some more challenges.

Tina helped nurse Michelle with the 8:00pm “hands on” by changing Ella’s diaper, weighing her, and switching out her bed blankets. Ella tolerated it well without any major fussing. Once the needle came out for Ella’s shot, I suddenly became very thirsty and wandered over to the drinking fountain in the other room. After getting the “all clear”, I came back and Ella was sleeping again.

She was very active today. She was up for a few hours early this morning, and again most of the afternoon. I think that’s why she was so zonked out while we were there tonight.

Tina’s co-worker, Ani, came to visit us and see how our baby girl was doing. She picked a good day to see her. She looked for a monkey to bring Ella, but opted for a bear instead. I decided to name the bear Ina (eee-nuh). Do you see how I creatively flipped Ani’s name around? Yeah…I got’s me some talent. We really enjoyed our time with Ani.

Even though our baby girl is making good progress, she still has a long road ahead. Please continue to think of us in your prayers, they make a huge difference. We thank you for continuing to endure this marathon with us. God Bless you all.

Matthew 18:19-20
19 “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20 For where two or three come together in my name, there am I with them.”

 
P.S. Something else to note…a minor crime has been committed in the NICU. If you remember our friends from Atlanta brought us a University of Georgia Mascot to join Ella’s Zoo. Well, I thought something like this might happen but…Uga the dog is missing!!!! I think a gator may have gotten a hold of him, but we’ll have to see. To be continued…=)

Our baby girl had another good night and her day is starting off on the right track. Her daily fluid output continues to reduce, from 390 to 340cc’s. She hasn’t needed as much suctioning and her blood gases look great (cO2 = 43, pO2 = 114). Keep going Ella! If you didn’t get a chance to see yesterday’s post, you’ll want to check it out. I know I’m biased, but the video is just a little cute =).

Also of note, today is an anniversary for Tina and I because on September 3, 1990 I asked her to be my girlfriend. When I asked, I committed that we would have to make God number one in our lives with communication second. Tina was getting ready to start her senior year in high-school. The picture above is us at her prom, and the other was taken since we’ve been out here. 17 years later, here we are. What an amazing journey.

Lord Jesus, we praise You for this incredible life You have ordained for us. You are such an awesome God. We rest in You, trust in You, and thank You for an extraordinary 17 years together. We ask that You continue to guide us forward so that we may become the husband, wife, and parents that You desire us to be. We know You only want the best for us Lord, therefore we surrender completely to You. May we be a witness of Your love to all we encounter. We love you Lord. Amen.