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’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.

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.”

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 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.

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.