Other than the swelling in her head, Ella had a pretty good night. Her O2 saturations have been looking good, usually pegging the 100% mark, and her pO2 numbers have been in the 90’s and 100’s, good for where she is right now (pO2 = total amount of O2 in her blood stream). Her cO2 has been elevated though, probably due to the secretions in her lungs, so they’re tweaking the ventilator to get that to come down.

Tina and I are feeling better this morning, once we heard that nurse Angie is taking care of our baby girl today. Angie said she would try and extend her hours a little more today if she could get her sister to watch her kids. Heck, I’d watch her kids every day if she would watch our baby girl! Angie confirmed that I didn’t know what I’d be getting into, but I just figured I be so worn out after taking care of 2 boys and a girl, that I’d just sleep better at night. =)

Angie confirmed that Ella has been more engaging this morning compared to what we saw last night. She’s watching Angie as she works, and Ramona the monkey hanging from her “vine” has caught her attention too.

We’re also waiting to talk to Dr. Kays about his thoughts on Ella’s swelling. Her head is just so much bigger then before. I just hope that it’s only getting a little worse before it gets a lot better.

I woke up at 5:15am, thinking of my baby girl. I was feeling anxious about the swelling in her head, and couldn’t go back to sleep, so I spent some time praying and reading the Word. I flipped open my Bible right to Psalm 3, and verse 5 spoke to me in that moment: “I lay down and slept, yet I woke up in safety, for the LORD was watching over me.” The life application notes expanded on this:

Sleep does not come easily during a crisis. … David cried out to the Lord, and the Lord heard him. The assurance of answered prayer brings peace. It is easier to sleep well when we have full assurance that God is in control of circumstances. If you are lying awake at night worrying about what you can’t change, pour out your heart to God, and thank him that he is in control. Then sleep will come.

Wow…how much does God rock! I then came across Psalm 5:1-3 (NLT):

1 O Lord, hear me as I pray;
pay attention to my groaning.
2 Listen to my cry for help, my King and my God,
for I pray to no one but you.
3 Listen to my voice in the morning, Lord.
Each morning I bring my requests to you and wait expectantly.

This is the reason why it’s called the “Living” Word of God. It amazes me how God speaks to us so clearly though His Word. I found myself reading a few more passages and then proceeded to fall back asleep. =)

Psalm 13 is my prayer for today:

1 O Lord, how long will you forget me? Forever?
How long will you look the other way?
2 How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?
3 Turn and answer me, O Lord my God!
Restore the sparkle to my eyes, or I will die.
4 Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.

5 But I trust in your unfailing love.
I will rejoice because you have rescued me.
6 I will sing to the Lord
because he is good to me.

Praise you Lord! Amen.

Once again, I’m feeling better about Ella’s condition now that I’ve talked to Dr. Kays.

The good news: Ella did not have any trouble digesting the small amount of Tina’s milk, however it did increase her fluid output (the opposite effect of what we want). So for now, the feedings have been eliminated.

Also, he is not overly concerned with the swelling in her head. He feels it does not pose any risk of brain damage or other major issues in the short term, but it does need to be treated.

The bummer news is that it does look like her superior vena cava has collapsed again (SVC syndrome). We had anticipated that this might occur; this means that we might need the procedure done again.

At this time though, Dr. Kays wants to hold off on another invasive procedure, and instead will try using a drug regiment made up of octreotide. This will focus on the overall fluid retention in her body (the medical term for this condition is called chylothorax). Studies indicate that this drug works 50% of the time, and usually starts having an effect after 3 days of use.

Please pray that this drug will work for Ella. There may be other treatments, but this one has very few side affects and is the least invasive.

Other than the SVC syndrome and chylothorax, Ella is doing well considering the severity of her sickness. Dr. Kays is positive about how her lungs are progressing, despite the large amount of fluid in her chest.

Praise God that her lungs are working as they should, and are getting a little better every day.

Thank you all for the continued thoughts and prayers. This burden is lighter when it is carried by so many.

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.”

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.”

Oh sweet Ella. Our baby girl is still very puffy. We’re really hoping and praying for a big change over the weekend, but for now we need to be patient. We are trusting that God’s timing is perfect.

Other then her fluid retention, Ella continues to remain stable. She was very awake this morning for nurse Andrea, and her stats have been in a range where Dr. Kays is comfortable. No other major changes at this time.

The only change they’ve made is removing the heparin drip (anticoagulant), and instead are giving her subcutaneous shots of another blood thinning medication called Lovenox. Dad has to look away while the baby girl gets these because they need to poke her in a fleshy part of the body to give them (picture dad shuddering now).

Oh, and they are checking her blood sugar levels too because of the octreotide. Not as bad as a shot, but they do prick her heal to get a drop of blood (and dad shudders again). Come to think if it, I’m not sure why they do this considering they draw blood from her every few hours from an arterial line, but I’m sure there’s a good reason. I’ll be asking that question today though just to be sure.

Tina’s feeling better these days. Hopefully this run on antibiotics will kill the infection for good.

Dad is doing ok as well, except for the moments he selfishly wants to just rescue his baby girl and take her away from all this. I say selfishly because I know with everything in me that God is sovereign and His timing is perfect, but I still want her to just be better now!

This baby girl has been such a blessing to us and to so many others. God knows exactly what needs to be done, what needs to be said, and what seeds will be planted before we can take the next steps.

Lord, continue to confirm your truths in our hearts, and know that our desire is to completely surrender to you. We praise you Lord, for every day we get to spend with our baby girl, and for all the others who are touched by her testimony. Thank you Jesus. Amen.

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.

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 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.

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.

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. =)