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 =).

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. =)

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.

Ella had a rough night. She was very touchy and unable to keep her saturation levels.

However, we have good news to share! It does appear that the meds are helping with fluid reduction. To give you an idea, this was her fluid output the past few days:

8/27 – 759 (SVC procedure completed)
8/28 – 892
8/29 – 678
8/30 – 724

Her fluids for 8/31 was 440 – – that is nearly half! Praise God that this medicine seems to be working. So, the staff has cut back significantly on the amount of fluids they have to replace, in order to keep her hydrated.

However, Ella does not seem to be having a good morning – – she is not able to maintain her stats. So, they have increased the oxygen on the ventilator to 75 (she was at 50 previously), just to give her lungs a break while we still focus on the fluid reduction.

Our friends, Brendan and Lesli, are here to visit from Atlanta. We are going to visit Ella and will post later!

p.s. Go Gators!

Ella’s doing alright this evening. Tina and I left the hospital at 9:30pm EST tonight, and the photos above show our baby girl at that time.
 
Dr. Kays replaced her ventilator tube with a larger one late in the afternoon today. He did so because her stats were not as good as he wanted and he thought maybe the tube was partly to blame. The larger tube will help with the volume of air moving in and out of her lungs, plus the older one can become obstructed with a buildup of secretions.
 
Ella was stable for awhile, but around shift change she really started fussing. She was teetering on going one way or the other, and she began to stabilize, but then it was time for nurse Jim to do his “hands on”. This involved turning her, changing her diaper, changing out some meds, giving her subcutaneous shot, getting blood from her heel*, etc.
 
After nurse Jim turned her, she started fussing real bad. Her stats really dropped. Dad’s stats really dropped too, so much so that I had to step away for a moment while she calmed down. She finally recovered, and then he had to give her the shot. I once again took a break, but she took it like a champ this time (stronger then dad!).
 
Finally got her to settle down, and this is the picture your seeing now. Sweet little Ella sleeping. Tell you one thing, you can’t even think about leaving her when she’s awake. Just too hard to do. Gotta wait for her to zonk out, then we can sneak off. =)
 
We did get some hopeful news. It looks like (maybe) her fluid output is decreasing. We’ll know better tomorrow, but at the moment it looks like she on track for a lower output number. Thank God. We’re really hoping and praying that this is true. It’s so key for her to get over all the fluid retention so she can move forward.
 
If she can progress enough, Dr. Kays may consider moving her to a standard ventilator next week. No guarantees on this, we’ll just have to be patient.
 
We’re also having some friends come visit us from Atlanta (Brendan and Lesli). We got to know them through the church we attended in California. They had planned to be here around 9pm, but traffic is slowing them up quite a bit. Excited to spend time with some old friends.
 
Please continue to pray for our baby girl, specifically for her fluid reduction. Thanks to all you prayer warriors out there!
 
God Bless.
 
 
*I found out that they need to take blood from her heel because if they were to take it from her arterial line it wouldn’t be as accurate. Her blood sugar has been stable so they’ll be reducing the frequency of these.

We went to see Ella tonight. When we arrived, she was turned on her left side hugging her pink monkey, Julep. It was cute. Although her bow was missing, so we had to make her another purple bow.
 
These days, they are trying to switch her to different sides every 4 hours or so. Since she was on her left side when we arrived, all the fluid in her head had shifted, so her left eye was swollen shut.
 
While we visited, the nurse shifted Ella onto her right side. By the time we left, the fluids had started to shift and she was able to open her left eye too.
 
Her blood gas levels tonight were in range: 57 on the cO2 and 94 on the pO2. The cO2 is still a bit higher than they would like to see, but is still in the acceptable range. The nurse mentioned that Dr. Kays had called in this evening to check on her too and was pleased with her stats for the evening.
 
Roger, Ella’s former ECMO technician, stopped by to visit and see how Ella was progressing. If you remember, he is the one that went and found the pink and purple material that Ella has been wearing for headbands and bows.
 
Roger made mention that he thought Ella might need some other color choices for bows. He walked back with some orange material with blue happy faces on it. He mentioned that he thought Ella should have a new bow on Saturday, given that it is the first Gators game (the team colors are orange and blue).
 
In case you do not know, Gainesville is a HUGE college town and the University of Florida Gator fans are everywhere, even in the NICU. We might just have to humor Roger and make Ella a new bow for Saturday, so she can show her Gator spirit too.
 
We are trying to be patient and wait on the Lord for the results we would like to see. Please continue to pray for reduced fluids and swelling along with continued strength for Ella’s lungs.
 
Thank you so much for your support and prayers.
 
Hebrews 4:16: “Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
 
Romans 8:25: “But if we hope for what we do not yet have, we wait for it patiently.”

Ella sustained throughout the night. She is hanging on the best that she can with her stats. There has not been sign of any fluid reduction. Her head is still very swollen. Dr. Kays will be looking for fluid reduction by mid Saturday or Sunday, to see if the new meds were effective.

Her cO2 levels continue to be higher than they would like to see (68, versus 40). So Dr. Kays decided to turn up the amplitude on the ventilator this morning to see if that will help her.

As Josh mentioned yesterday, we are thankful that her lungs are cooperating at this stage of the game and not completely giving up. Sometimes with all the fluid surrounding them, they can decide to not work well!

Please pray for fluid reduction overall, for her head swelling to reduce and for her lungs to hang in there while we solve the fluid/swelling mystery!

Also, for Dr. Kays – – that God will provide wisdom and discernment. This issue is not one that is frequent and the steps we are taking to try and fix it are somewhat experimental!

We are holding out hope that we will find a solution soon.

Psalm 33:22 “May your unfailing love rest upon us, O LORD, even as we put our hope in you.”

Ella sustained her stats throughout the day. When I went to visit her, her blood gases and saturations were good.

Also, they began feeding her the small amounts of my milk throughout the day and she tolerated it just fine. Keep in mind that since Ella has not had to digest any food up to this point, her intestines are at risk of not working. In other words, it is almost like they can atrophy because they are not being used. So the purpose of supplying the smallest amount of my milk was to entice the cells in her intestines that there will be real food coming at some point! In any case, it is a good sign that she tolerated it well.

Visiting her today and tonight was rough. We did have several concerns and the nursing staff was not effective in answering our questions. Unfortunately, that tends to make things worse and makes us wish that we had a direct line to Dr. Kays, so he could alleviate our concerns.

Even though Ella’s stats are good, her swelling has not reduced. So far, it doesn’t seem like the invasive SVC procedure has made much of a difference. This means that there is a good chance that the procedure will need to be repeated. In addition, her head swelling was much worse tonight versus 24 hours ago.

On top of all of that, Ella just seemed very out of it. We are not sure if it is because she was just real tired or if it was an indication of anything. On Monday morning before the procedure, you would talk to her and she would look around and respond to your voice. She hasn’t been doing that since the procedure yesterday.

When you see these types of side effects and the SVC procedure is not something that this hospital or staff has a lot of expereince treating, it starts to get the best of you!

Honestly, it is probably nothing. Our perception is that she has worsened, but I think we are just nervous about everything that she has been enduring.

If you would, please join us in praying for our little girl: that we will see fluid reduction from her chest tubes, her overall swelling would reduce significantly(especially her head), and her superior vena cava issue would resolve itself. Also, that tomorrow will be a better day for her parents!

As we prepare for a night’s sleep, we rest in His promise:

Isaiah 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thanks for all the support from everyone. Good night!

Ella had a good night – – we were at the hospital until 12 midnight just hanging out with her and nurse Janet. She was peaceful and sleeping most of the time. I had a great time just holding her feet and having her grip my hand while she was sleeping. I could have stayed there for hours just staring at her beautiful little face.

We called to check in on her this morning and she continues to do well today. Her stats remain stable and blood gases have been in the acceptable range, given her stage of recovery. We are still waiting to see if her fluid reduction will decrease by the end of the day along with the swelling in her head, based on her SVC procedure being completed. She is continuing to receive heparin to thin her blood and prevent clots in the superior vena cava.

As we mentioned in an earlier post, I was pumping every 3 hours for Ella. During that time, the NICU collected and froze my breast milk. So, starting today they will be inserting the feeding tube and beginning to try feeding some of that initial breast milk from the frozen supply (1 ml every 3 hours). Hopefully, her little body will be able to handle the minimal amount.

Unfortunately with 2 rounds of mastitis, I have lost my milk supply and will not have the opportunity to continue to provide breast milk to Ella. However, at least she will have some of the initial breast milk which is better than nothing!

Ella’s next milestone is steady fluid reduction. Currently, the fluid is filling up the space in her chest which is hindering her lungs. Without continual fluid reduction, she won’t be able to progress forward.

By the way, Grandma headed home yesterday right before Ella’s SVC procedure, but she sure enjoyed her time while she was here!

Thanks again for all the posts. They provide such encouragement, love and support during this tough time. And of course, without your prayers, we know Ella would not be making the progress that she has made so far.

Thank you Lord for our friends and family. Thank you for their tremendous support and encouragement during this time. We ask that you hold Ella in your hands and continue to heal her body.

We also want to lift up a special person today that is receiving surgery. His name is Georgie. Lord, you are the great physician. We ask for no complications and perfect techniques by all the staff performing surgery at MD Anderson today. We pray for complete healing and quick recovery. We thank you for this brother in Christ – he is such a blessing. We lift up his family too, especially his Mom. She has traveled to be with him at surgery time and we pray that she would be surrounded with your love and comfort throughout today.

Once again, we praise you for the blessing of Ella Renae and the opportunity to glorify you in the midst of this storm. Thank you Lord.