Well, Ella couldn’t dress up too much for her first Halloween, but she is one of the most spirited Halloween babies in the NICU.

Ella maintained so well yesterday that they weaned her CPAP again. The pressure is still on 6, but they reduced the oxygen slowly throughout the day until it reached 35% last night at 7:30pm.

She did have one hang up today so far. Her NJ line, which goes directly into her intestines, clogged up. This is the tube they use to feed Ella the Portagen formula. They tried to unclog it, but that was unsuccessful. Then, they removed the line and tried to re-insert a new line. That was not successful either.

In order to make sure she gets her formula timely, they are going to transport her down to radiology. Using the equipment down there, they can be precise with placing a new NJ line. Please pray for a successful procedure.

We got a bit of a spook this morning. The phone rang and it was the credit card company, asking to verify activity on our account. As I listened to the laundry list of charges (all from yesterday), it was easy to see that we had a fraud situation on our hands. They went to Macy’s, Circuit City, Office Max, etc. (all from stores in Fresno, CA).

All of this on a day that is feeling weary for me and Josh.

Thanks for your continued prayers for Josh and his focus at work. Although he worked through the night, he was not able to meet his deadline. He is steadfastly working away as I update all of you, trying to complete his project. For me, it is simply hard to work each day and not be able to spend time with Ella. Although she is down the street 20 minutes away, she is not in a nearby room. That makes it tough.

It is hard to believe that we are on Day 100. As Josh and I had a bible study this morning, it was amazing to look back and reflect on all God has done and how He continues to guide us and protect us. We are so thankful for this new little person that He has introduced into our life. We just can’t imagine it any other way.

Although we “feel” weary, we hold onto the truth in our spirits…that He is ever so close watching over every detail and orchestrating His perfect plan.

UPDATE (4:30PM EST): We just received a call from the hospital. They transported Ella down to the radiology department. To do that, they had to take her off of the CPAP ventilator and place her on a regular nose cannula with oxygen support. She did well during the transition and procedure.

Unfortunately, they were not able to replace the line into her pyloric valve. Apparently, her liver is so enlarged from the pulmonary hypertension, that is has affected the anatomy and placement of the organs in her abdominal cavity. For now, they have continued to feed her through her NG line into her stomach. Dr. Kays will be back at the hospital in the morning and they will consult with him on the next steps.

In the meantime, it is encouraging that they have been feeding directly into her stomach since 4am and she has only spit up once. They have continued to give her medicine for reflux and we are just hoping and praying that she can continue to accept the Portagen formula directly into her stomach.

Well, Ella couldn’t dress up too much for her first Halloween, but she is one of the most spirited Halloween babies in the NICU.

Ella maintained so well yesterday that they weaned her CPAP again. The pressure is still on 6, but they reduced the oxygen slowly throughout the day until it reached 35% last night at 7:30pm.

She did have one hang up today so far. Her NJ line, which goes directly into her intestines, clogged up. This is the tube they use to feed Ella the Portagen formula. They tried to unclog it, but that was unsuccessful. Then, they removed the line and tried to re-insert a new line. That was not successful either.

In order to make sure she gets her formula timely, they are going to transport her down to radiology. Using the equipment down there, they can be precise with placing a new NJ line. Please pray for a successful procedure.

We got a bit of a spook this morning. The phone rang and it was the credit card company, asking to verify activity on our account. As I listened to the laundry list of charges (all from yesterday), it was easy to see that we had a fraud situation on our hands. They went to Macy’s, Circuit City, Office Max, etc. (all from stores in Fresno, CA).

All of this on a day that is feeling weary for me and Josh.

Thanks for your continued prayers for Josh and his focus at work. Although he worked through the night, he was not able to meet his deadline. He is steadfastly working away as I update all of you, trying to complete his project. For me, it is simply hard to work each day and not be able to spend time with Ella. Although she is down the street 20 minutes away, she is not in a nearby room. That makes it tough.

It is hard to believe that we are on Day 100. As Josh and I had a bible study this morning, it was amazing to look back and reflect on all God has done and how He continues to guide us and protect us. We are so thankful for this new little person that He has introduced into our life. We just can’t imagine it any other way.

Although we “feel” weary, we hold onto the truth in our spirits…that He is ever so close watching over every detail and orchestrating His perfect plan.

UPDATE (4:30PM EST): We just received a call from the hospital. They transported Ella down to the radiology department. To do that, they had to take her off of the CPAP ventilator and place her on a regular nose cannula with oxygen support. She did well during the transition and procedure.

Unfortunately, they were not able to replace the line into her pyloric valve. Apparently, her liver is so enlarged from the pulmonary hypertension, that is has affected the anatomy and placement of the organs in her abdominal cavity. For now, they have continued to feed her through her NG line into her stomach. Dr. Kays will be back at the hospital in the morning and they will consult with him on the next steps.

In the meantime, it is encouraging that they have been feeding directly into her stomach since 4am and she has only spit up once. They have continued to give her medicine for reflux and we are just hoping and praying that she can continue to accept the Portagen formula directly into her stomach.

Ella continues to do well today.

Her CPAP is still at a pressure of 6, but her oxygen was weaned to 45% last night. Slow and steady progress!

Also, the full CBC results came back and Ella does not have an infection – Praise God! We are beginning to think that these intermittent fevers are not of concern, but that she just runs warm like her Daddy!

Yesterday, they did a test for Ella’s electrolytes. As a result of the tests, they made some adjustments to her sodium and potassium (they were a bit higher than they like to see) and will check it again later in the week.

Since the UAC line was removed from her belly, they have noted that Ella’s blood pressure is a bit elevated. Her systolic pressure has been higher than they would like to see (over 100, even when sleeping). I was told that this type of hypertension is a common side effect for babies that have been on ECMO and that if it does continue to climb, they will likely treat with blood pressure medication.

Today, they took an abdominal ultrasound to see how things look and should have the results in 24 hours or so. They want to make sure that since the UAC line was in for so long, that there is not a blood clot somewhere that is causing her elevated blood pressure.

Since they are trying to be proactive, there is also an order for the Renal Department to also come and visit Ella for an assessment (check her kidneys; a side effect of any mishap in the kidneys is higher blood pressure).

Please join us in praying that there is nothing wrong with Ella’s kidneys and/or anything related to her slightly elevated blood pressure.

Also, a special prayer request for Josh. He has been consumed by a special project at work, so he has put in extra hours at work this past weekend and each evening. Therefore, he has not gone to visit Ella. Please pray for the ability to meet his deadline and extra sharp focus for the task at hand.

We thank all of you for your continued thoughts and prayers.

Ella continues to do well today.

Her CPAP is still at a pressure of 6, but her oxygen was weaned to 45% last night. Slow and steady progress!

Also, the full CBC results came back and Ella does not have an infection – Praise God! We are beginning to think that these intermittent fevers are not of concern, but that she just runs warm like her Daddy!

Yesterday, they did a test for Ella’s electrolytes. As a result of the tests, they made some adjustments to her sodium and potassium (they were a bit higher than they like to see) and will check it again later in the week.

Since the UAC line was removed from her belly, they have noted that Ella’s blood pressure is a bit elevated. Her systolic pressure has been higher than they would like to see (over 100, even when sleeping). I was told that this type of hypertension is a common side effect for babies that have been on ECMO and that if it does continue to climb, they will likely treat with blood pressure medication.

Today, they took an abdominal ultrasound to see how things look and should have the results in 24 hours or so. They want to make sure that since the UAC line was in for so long, that there is not a blood clot somewhere that is causing her elevated blood pressure.

Since they are trying to be proactive, there is also an order for the Renal Department to also come and visit Ella for an assessment (check her kidneys; a side effect of any mishap in the kidneys is higher blood pressure).

Please join us in praying that there is nothing wrong with Ella’s kidneys and/or anything related to her slightly elevated blood pressure.

Also, a special prayer request for Josh. He has been consumed by a special project at work, so he has put in extra hours at work this past weekend and each evening. Therefore, he has not gone to visit Ella. Please pray for the ability to meet his deadline and extra sharp focus for the task at hand.

We thank all of you for your continued thoughts and prayers.

Ella’s doing good today.

This morning, they have weaned her versed again just slightly (sedative medicine). Also, they drew blood to get a complete look at her liver function (biliruben count) as well as her electrolytes. Since they are weaning all of the meds, the balance of additional supplements they give her might need to be adjusted.

As of last night, Ella started to gain back some weight. She was at 7 lbs, 11 ounces.

With less and less tubes, it is getting easier to hold Ella. While they situated her into my arms last night, they had to adjust her CPAP head gear, so we grabbed a photo real fast. It was one of those brief moments of seeing her face without any tubes or tape. As you can see, I’m a little excited to stare back at that beautiful face!

We’re so thankful for the progress. She has such a sweet spirit. Reflecting back on these brief moments in time and the joy from the experience, just reinforces that the Lord is good. He does want the best for us.

We praise you Lord for your healing hand.

We can’t thank you enough for this baby girl. Amen.

Ella’s doing good today.

This morning, they have weaned her versed again just slightly (sedative medicine). Also, they drew blood to get a complete look at her liver function (biliruben count) as well as her electrolytes. Since they are weaning all of the meds, the balance of additional supplements they give her might need to be adjusted.

As of last night, Ella started to gain back some weight. She was at 7 lbs, 11 ounces.

With less and less tubes, it is getting easier to hold Ella. While they situated her into my arms last night, they had to adjust her CPAP head gear, so we grabbed a photo real fast. It was one of those brief moments of seeing her face without any tubes or tape. As you can see, I’m a little excited to stare back at that beautiful face!

We’re so thankful for the progress. She has such a sweet spirit. Reflecting back on these brief moments in time and the joy from the experience, just reinforces that the Lord is good. He does want the best for us.

We praise you Lord for your healing hand.

We can’t thank you enough for this baby girl. Amen.

Ella Renae continues on her steady track forward. She’s taking her time, but she’s looking better every day.

As I type this, she is resting her her mother’s arms. Fidgeting here and there, falling asleep, waking up, looking at mom. So wonderful to have this peaceful time with her.

And it remains peaceful, except for the times when we have to adjust the CPAP cannulas. What a pain the tuchas! They just tend to work their way out of Ella’s nose while she’s awake and moving.

Overall though, Ella has really tolerated CPAP. We’re looking forward to stepping down to the regular oxygen cannulas, something that can’t happen soon enough for us. =)

Ella’s meds continue to be weaned too. In fact, the Octreotide has been DC’d today. No other major changes though on this front.

On another note, Tina and I had a great time with some new friends last night. Liz, Rusty, and Barbara (Liz’s mom) joined us for dinner at a local pizza place. Liz is about to have a baby boy with CDH here at Shands, and we thank our Lord for the opportunity to share some of our experiences with them.

Please pray for God’s perfect timing in their son’s birth as well as patience, strength, and peace for Liz, Rusty, and their entire family. We also thank you for your steadfast prayer for our baby girl’s continued progress.

I’ll leave you with this thought the Lord has been affirming in my heart over the last few days:

God’s truth never changes, but our lives are changed in every way when we embrace it.

Ella Renae continues on her steady track forward. She’s taking her time, but she’s looking better every day.

As I type this, she is resting her her mother’s arms. Fidgeting here and there, falling asleep, waking up, looking at mom. So wonderful to have this peaceful time with her.

And it remains peaceful, except for the times when we have to adjust the CPAP cannulas. What a pain the tuchas! They just tend to work their way out of Ella’s nose while she’s awake and moving.

Overall though, Ella has really tolerated CPAP. We’re looking forward to stepping down to the regular oxygen cannulas, something that can’t happen soon enough for us. =)

Ella’s meds continue to be weaned too. In fact, the Octreotide has been DC’d today. No other major changes though on this front.

On another note, Tina and I had a great time with some new friends last night. Liz, Rusty, and Barbara (Liz’s mom) joined us for dinner at a local pizza place. Liz is about to have a baby boy with CDH here at Shands, and we thank our Lord for the opportunity to share some of our experiences with them.

Please pray for God’s perfect timing in their son’s birth as well as patience, strength, and peace for Liz, Rusty, and their entire family. We also thank you for your steadfast prayer for our baby girl’s continued progress.

I’ll leave you with this thought the Lord has been affirming in my heart over the last few days:

God’s truth never changes, but our lives are changed in every way when we embrace it.

Ella is doing well today.

Her fever has not returned so we are hoping that it means that she truly does not have an infection. We should know by Monday morning.

They weened her octreotide medicine and fentanyl today too. They expect to be off the octreotide completely within the next day or so. The withdrawal from all of this has made her a bit more fussy and hard to console.

Today I was able to see where the chest tubes were in her back and the incisions seem to be healing well. Her repair scar across her abdomen looks really good. It has started to blend in with her skin and almost become unnoticeable.

Around 3pm, they weened her CPAP pressure down to 6. This is another baby step forward in her progress and she seems to be tolerating it well.

It is so exciting to see Ella take these steps forward. Looking at her today, it’s hard to believe that only 4 weeks ago, she was in such a dark place.

We are so thankful for her progress. Thank you for all of you joining us on your knees and petitioning God to heal and strengthen her body.

Colossians 3:15-16

15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.
16 Let the word of Christ dwell in you richly as you teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God.

Ella is doing well today.

Her fever has not returned so we are hoping that it means that she truly does not have an infection. We should know by Monday morning.

They weened her octreotide medicine and fentanyl today too. They expect to be off the octreotide completely within the next day or so. The withdrawal from all of this has made her a bit more fussy and hard to console.

Today I was able to see where the chest tubes were in her back and the incisions seem to be healing well. Her repair scar across her abdomen looks really good. It has started to blend in with her skin and almost become unnoticeable.

Around 3pm, they weened her CPAP pressure down to 6. This is another baby step forward in her progress and she seems to be tolerating it well.

It is so exciting to see Ella take these steps forward. Looking at her today, it’s hard to believe that only 4 weeks ago, she was in such a dark place.

We are so thankful for her progress. Thank you for all of you joining us on your knees and petitioning God to heal and strengthen her body.

Colossians 3:15-16

15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.
16 Let the word of Christ dwell in you richly as you teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God.