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.”’

All good news to share this morning.

Ella is sustaining on the new ventilator incredibly well. They took a blood gas this morning – – it was too good (cO2 = 47, pO2= 223). The amount of oxygen in her blood was surprisingly high, so Dr. Kays reduced the assisted oxygen on the ventilator from 60% to 50%. This is amazing progress for Ella.

Also, her fluids are still decreasing. A total of 145 for yesterday, down from 215 (the highest was 892 last week).

Thanks so much for the prayers that continue for sweet Ella.

Deuteronomy 10:20-22
20 Fear the LORD your God and serve him. Hold fast to him and take your oaths in his name. 21 He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.

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…=)

I’ll start this post by mentioning that if you didn’t get a chance to see Sunday’s post, you’ll want to check it out. It is the best way to see how far Ella has come and how all those prayers are working =).

I just called to get an update on Ella. Praise God – – her fluid output was only 215 for all of yesterday! I know that Dr. Kays wanted to see it under 300, so this is really great progress. If you remember, she had as much as 892 last Tuesday. That is amazing.

Her blood gases have not been quite as good since they turned down the ventilator, but are still definitely in the “good” range. Her cO2 was 55 (they like to see it around 40) and her pO2 was 94 (they like to see that number as high as possible). She is scheduled for another blood gas at noon, so hopefully those numbers will sustain.

She had a chest xray this at 4am this morning and is scheduled for another xray tomorrow morning. I am sure these were ordered by Dr. Kays so he can monitor and see how the reduction in fluid is impacting her lungs.

We really hope to hear from Dr. Kays today. We want to know what the plan of action is for her next milestone!

P.S. Last night we had the opportunity of hanging out with Clay and Julie Brantley (Jordan’s parents). If you remember, Jordan was born on August 1st, was in the NICU III until August 20th right next to Ella, and then moved to the NICU II. She has progressed so well, that they are looking to take her home this week! Such an exciting time for them – – thanks for all the prayers lifting up Jordan.

UPDATE (12:15pm EST): Ella is being switched to a normal ventilator right now. This is another big milestone. She may not tolerate it too well, but it’s a necessary step. Please pray for success during this transition.

UPDATE (1:30pm EST): Ella is so far maintaining on the standard ventilator, but this could change at any time. Dr. Kays said to not worry if she has to go back to the other vent, but so far so good. Go Ella!

Ella had another great day. Her stats (high 90’s) and blood gases (cO2 = 47, pO2 = 114) maintained so well that Dr. Kays reduced the FiO2 on the ventilator to 55 earlier today. As of late tonight, she was still maintaining quite well.

Another change: Dr. Kays increased the amount of octreotide (the medicine given to reduce fluids). Originally, he was giving 3.5; he doubled the dosage to 7. This is the maximum amount that a baby of her size can receive.

Although we have had really good results with the fluid reduction so far, he still wants to see her fluids way less. His immediate goal is to have her fluid output under 300 per day. As of the last 24 hour period, it was 340. The results for 9/2 will be available at 7am tomorrow morning.

It will take a few days to see the maximum impact from the highest dosage of octreotide. From there, we will be able to tell if the fluid reduction has been sufficient enough or if we need to consider other therapies.

Within the next few days we also expect to hear from Dr. Kays on whether or not he is recommending another “balloon” treatment for her collapsed superior vena cava (SVC syndrome). Our hope is that the head swelling has reduced enough that we can skip that procedure all together, but we will have to wait and see.

One side note: when we first saw Ella today, we noted that she had inadvertently scratched her cheek. Her nails were getting so long and due to the blood thinner, you cannot clip her nails. But, we found out that we could file her nails.

So, yes, Ella had her first manicure in the NICU as Mom filed down her nails! She was alert, looking around and staring at her monkeys while I worked on her hands. The pictures did not turn out well, but trust me, it was pretty cute.

Thanks for the continued prayers for Ella – – they are working! We are seeing God slowly restore her strength and heal her body.

It has been an amazing journey…we thank you for participating with us.

P.S. I know many were gone for the holiday weekend, so if you didn’t get a chance to see Sunday’s post, you’ll want to check it out. The video is cute and really shows Ella’s progress =).

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.

So, we went to visit Ella early this evening. When we walked in, her stats were pegged at 100. She was sleeping peacefully with her pink monkey. We did not want to disturb her, so we waited off to the side and got an update from Nurse Andrea.
 
She behaved well all day long. Sometimes she can be touchy and have episodes real easily. Not today – – her body was turned every 4 hours, they cleaned her, changed her bed, etc. Ella’s stats did not fluctuate at all; she tolerated it.
 
We asked about her blood gases. When they took them at 2pm, the cO2 was 33 and the pO2 was 188. The numbers were so good that they ran them a second time 5 minutes later to make sure it was reading correctly. When they ran it a second time, the cO2 was 35 and the pO2 was 190. Wow!
 
While we were there at 6pm, they did another blood gas. The cO2 was 57 and the pO2 was 198. As soon as Dr. Kays was paged with these stats, the phone rang and he asked them to turn down the FiO2 on the ventilator to 60 (if you remember, it has been 70 since yesterday morning). Even her brain oxygen level was way higher (in the 70’s) than it is normally (the 50’s).
 
I asked about the sudden change in Ella’s stats – – they seemed to be so good. Nurse Andrea thinks it is from all the fluid reduction.
 
Finally about 15 minutes before the shift change of nurses (when parents have to leave the NICU), Ella decided to wake up. She looked amazing! Her eyes were wide open, looking around. It was such a fun time to see her so alert and responding to our voices.
 
When we did have to leave, it was tough. We hate to leave when she is awake! But it was such a blessing to have those 15 minutes or so with her.
 
This journey is such a roller coaster. Ella has good days and bad days. It is so tough emotionally, tougher than anything else that I have ever experienced.
 
But, the Lord knows what we can handle and He seems to time these precious moments with Ella just perfectly. When we are feeling vulnerable and weary, He gives us these unforgettable times with her. It is these times we feel truly heaven blessed to have created this little life and to have been chosen as her parents.
 
Knowing that you are in the center of His will is not something that comes along in life too often with such clarity. Yet, we know that right now is one of those times; this truth helps us to keep going on this journey.
 
Please continue to pray for head swelling to reduce, fluid reduction and overall strength for her lungs.

Lord, we thank you for Ella Renae. We thank you for your grace, mercy and your faithfulness. We cling tight to your promises.
 
Psalm 118:1: Give thanks to the LORD, for he is good; his love endures forever.
 
For those of you with a high speed Internet connection, enjoy the video below. =)

Our baby girl is doing well this morning. Overall she had a stable night and her fluid output continues to decrease. Her total for the 24hour period (9/1/07) was 390, down from 440 yesterday. Her blood gases taken at 8am were so good, they were surprising (cO2 = 33, pO2 = 118)!

Since Ella has had a rough couple of days, it is good to see these numbers; they are a definite improvement over her previous levels. However while these numbers are good, her FiO2 (Fraction of Inspired Oxygen) is at 75. This is the amount of oxygen she receives via the ventilator. This amount was increased from 60 after her rough evening and morning early yesterday. Now that she’s doing better, I would expect Dr. Kays to ween this number down again (she was as low as 46 in the previous days). Being able to reduce this number will help her come off the ventilator, but she needs to maintain her stats to do so.

Ella still has a ways to go in reducing her fluids, but we’re thankful that she’s going in the right direction. While her main fluids are dropping (chylothorax condition improving), her head is still very swollen. This is more related to her superior vena cava condition. If her head does not reduce in size, they may consider performing another SVC procedure. Due to the risks of damaging her vein with the “balloon”, we hope that she does not need to have this done.

Please continue to pray for Ella’s overall fluid reduction (390 is still too high), reduction in her head swelling, and for her stats to remain stable enough so they can ween her off the ventilator.

Praise the Lord that we’re this far along in our journey, and Glory to God for the victories along the way! Thank you Jesus for our baby girl.

Ella is doing better today. She has had a couple of “episodes” and is on the sensitive side with her stats, but we hope that she can carry through the night.
 
Nurse Andrea turned Ella on her left side today; she tolerated it for about an hour. After that, she switched to her back and Ella seems to be doing better.
 
She does have a bedsore on the back of her head from being on that position so frequently. They have treated it with surface antibiotic ointment and are trying their best to monitor it.
 
Her blood gases at 2pm were slightly better (57 for cO2 and 68 for pO2). We will wait to see on the next blood gas at 10pm.
 
When we checked at 6:30pm, her fluid output levels were around 250 (less than the same time yesterday). Ella has to go all the way until 7am to complete the 24 hour period. But, we are hoping to see even more fluid reduction.
 
We had our friends visit from Atlanta today, Brendan and Lesli. They brought a new monkey named Georgia to add to Ella’s zoo. Also, they couldn’t handle too much Gator spirit (although the Gators won over Kentucky by a landslide today), so they brought a University of Georgia Bulldog to sit in her bed. Watch out Gators!
 
They tried to convince us that she is a Georgia Bulldog at heart, but we let them know that she must have a bit of Gator spirit in her considering she was born in Gainesville! Brendan even promised that if Ella gets better, he will wear a Gator shirt for a day…wow!
 
It was so nice to visit and have the support of friends. They had a long drive both directions from Atlanta, but it meant so much to see them.
 
We hope that Ella’s fluids continue to decrease through the night and that she can maintain her stats. We would like to see her have a calm, restful night!
 
Thanks for everyone’s support and prayers.
 
UPDATE (12:32am EST): Called in to check on Ella. Nurse Jim said that she’s doing real well tonight. She’s been behaving for him since he started his shift (7pm). Her saturations have been pegging 100% and she’s be resting well. We’ll be resting well too =). G’Night all.