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.

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.

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.”

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.

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.

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.

Tina and I arrived at the hospital this afternoon around 3:30pm and to our surprise, Ella was already back in the NICU, procedure complete. I was anxious to hear any details about what had occurred. When I approached the nurse on staff, she indicated she was not able to give me any information. However, I knew she was there during the entire procedure. So, I was looking for something; anything to let me know how Ella did.
 
The nurse stated, again, firmly that she was unable to give me any information. Couldn’t she at least tell me something? I was looking for her to diffuse my anxiety and instead I got a by the book attitude of “I can’t say anything”. With that response I got very frustrated very quickly and, in a nutshell, I ended up apologizing to her later. So, needless to say, this afternoon was not a “shiny happy people” moment for me at first, but things did get better.
 
Once we were able to get information, initially from Dr. Saxonhouse and then from Dr. Kays, we learned that Ella’s contrast x-ray did show that her superior vena cava had collapsed. There was no clot, but it was like Dr. Kays had thought: Due to the irritation by the cannula, the vein had become inflamed and weakened. This is not something they normally see. He’s only treated two other cases, out of about 200, where this had occurred. This is also confirms the cause for the swelling in her head.
 
To help open the vein back up, they were able to insert a small balloon and expand it a little. They had to be very careful while doing this, due to the risk of irreversible damage to her vein. Thankfully, the procedure was performed without issue and for now it looks like it has done the trick. Also, Ella is receiving heparin to thin her blood and help with the flow. We were told that they may have to repeat this procedure again because there is a chance of a reoccurring collapse. If they do go in again, they’ll be able to utilize some scar tissue that would have built up around the vein and stretch it out a little more.
 
Yes, there was a little drama with her oxygen on the initial transport, but her stats never reached a critical point during that time and she recovered very quickly. Either way, not a fun thing for Tina and Grandma to see. The speed in Ella’s recovery time after this incident was a good sign as well. She was also very stable throughout the entire procedure. Her stats didn’t drop at all and she tolerated all the work doctors performed on her. Thank God.
 
A bit of unexpected good news: Dr. Kays is going to give Ella some of Tina’s milk tomorrow! He wants to get her intestines working, so they’ll be feeding her via a stomach tube. This is really exciting for us because it’s the first time that all of Tina’s work will pay off.
 
At this moment Ella’s stats look good and she’s resting well. Thanks to all of you for the prayers. I know they’ve made an incredible difference in our baby girl’s health.
 
Continuing to praise God for the gift of being Ella’s parents. Thank you Lord…thank you.

(Nathan Greene – Chief of the Medical Staff)

The above image was mentioned by Laura Blackwell and thought we would share (Thanks Laura). This is exactly how I pictured things when our baby girl had her major surgery a week ago today.

Ella had a good night and is scheduled for her x-ray and possible procedure at 12:00pm (EST) today. Please pray.

If you missed it, you’ll want to check out the video from last night’s post. She too picken’ cute!

UPDATE (1:30pm EST): It’s Tina, writing in with an update. Grandma and I went to the hospital this morning to see Ella before her procedure. Her stats were good, she was stable and calm. She seemed very peaceful as she fell in and out of sleep while gripping Grandma’s finger.

Then around 12 noon, they began the preparations to move her down to radiology. That took about 30 minutes. She is connected to sooo many machines and tubes. There were about 7 staff members involved in her transport.

Before they moved her, they gave her a paralytic medicine so she would not move and be lucent. Then, they switched her to a transportable ventilator machine (one that she does not normally respond well to).

As they started to transport her from the NICU and went through the main doors, something went wrong with the ventilator and she was not getting any oxygen. The machine began to beep loudly and they began to bag Ella. Then, they turned around and came back in the NICU to fix the ventilator and stabilize her again. This was tough to watch! I have no idea how long she was without oxygen. It took them about 10-15 minutes to stabilize her again and fix the ventilator.

From there, we went down to the room where the procedure would be completed. When we walked in, it felt like a freezer. Immediately, Dr. Kays told them that the room was way too cold for a baby and they needed to get it as warm as possible.

Once the bed was next to the operating table, they began to unhook everything from her bed. All the drip lines, IV fluids, catheter, fluid bags from the chest tubes, etc, etc, etc. Then, about 4 of them lifted her simultaneously onto the operating table. The prep part of making sure she is stable and all the machines are hooked up again in the radiology room was about a 45 minute procedure.

We followed her down to radiology because they had consent forms for me to sign. Then the doctor (radiologist) came over to talk to me and explain the procedure. Although he was trying his best to be comforting, he was honest and frank: they have only done this type of procedure a few times. It is not common. Then, he went through the laundry list of side effects and risks of going through the superior vena cava vein. He spoke about all the negative things that can happen to Ella.

The art work from this morning helped me to visualize. There were about 10 medical staff in this room with Ella, prepping and stabilizing her. But ultimately, He is with her.

I’ll be honest – – it was a roller coaster morning. We had such a good time interacting with her this morning. Then to see the paralytic medicine take effect (she almost doesn’t look alive), to the drama of moving her and having the ventilator go out, to the radiologist giving me the laundry list of everything that can possibly go wrong with my baby girl and sharing that this is not a common procedure that they have a lot of experience with…man!

As a heads up, it will likely be 4 hours or so before we have any updated information. Thanks everyone for your prayers.

Lord, I know you are in control. Give me Your strength today. Everything that happens is something that you ordain. All of it is for Your glory and Your purposes. Please protect and hold our baby girl in your arms. Thank you for the blessing of Ella Renae.