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’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 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.

Yes, Ella has been running a fever since last night.

While we were visiting, they noted a temp of 100.6, so they gave her some Tylenol orally to see if it would go away. As of this morning at 7am, she still had the fever. Unfortunately, it has continued this afternoon.

They proceeded to do a complete blood culture (CBC). The initial results should be back around 3pm EST. This will give a general idea if she has an infection. The complete blood culture takes 2-3 days to come back.

If you remember, she had the same scenario over this past weekend where she suddenly had a fever. When they did the CBC at that time, it was determined that she did not have an infection.

Now 4 days later, the fever is re-appearing. They want to do the CBC to be 100% sure that it is not an infection. The only sources for infection now are the PICC line in her arm and her diaphragm and abdominal patches.

CDH babies do not recover well from infection. Please join us in praying that Ella does not have an infection.

Her heart rate is slightly elevated which is typical with a fever, but Nurse Kelly states that Ella seems to be behaving normal.

You will notice it too, in the short video below. Enjoy!

UPDATE (6:30pm EST): The initial CBC test came back and it looks promising that Ella does not have an infection (blood counts look good). They will not be able to definitely rule out infection until 48 hours passes. Thanks for the prayers!

Nurse Kelly is taking care of Ella today. She hadn’t seen Ella for a week and was simply amazed at her progress.

Ella had a stable evening and morning so far.

They slightly weened the versed drip more today which is good (the sedative). Also, they discontinued an antibiotic. This antibiotic was given as a preventative measure starting this past weekend when she had a fever for about 24 hours. But, the blood cultures came back negative, so they have DC’d the antibiotic. Praise God!

As a side effect of CPAP, sometimes the eyes can get a bit puffy from the air pressure. Also, the babies tend to get air in their bellies. This is why the small tube is in her mouth (NG line). Each day, they pro actively suction the air out of her belly. If needed, they can also use this line to administer meds too, although they try and minimize that because it can make her nauseous.

Ella has continued to lose a bit more weight. As of last night, she was around 7 lbs, 8 ounces. This is still a positive sign as she still has some edema and subcutaneous fluid to lose (not chest fluid, thankfully).

Ella’s liver remains enlarged, as it has been since she was born. This is a common side effect for CDH babies, since their bodies are initially working extra hard and not functioning optimally. We pray that her jaundice would reduce and her lungs will continue to strengthen. As her overall strength continues, we expect that her enlarged liver will reduce too.

As far as holding her, we have not asked to hold her over the past 2 days since she was switched to CPAP. Selfishly, we would love to hold her. But when she is at a critical point, we don’t want our desires to get in the way of her progress. Especially at the beginning of her transition, we wanted to make sure that she could successfully tackle this milestone before we asked to hold her again. (When CDH babies are working extra hard to tackle a new milestone or are extra sick, the stimulation is often not beneficial). Since she has been making such great progress, we might just have to get some holding time in soon!

Nurse Kelly commented that she has been awake this morning. Then, she will hear Ella fussing. When she goes into the room to check on her, Ella sees Nurse Kelly and stops fussing immediately upon seeing her. So there is nothing wrong with her, but she just demands the attention! Yes, Miss Ella Bun is spoiled already!

We are hoping that she will be awake when we visit her later. The past 2 days she has been asleep when visiting. Thus, the sleeping beauty photos!

Thanks again for the continued prayers for our baby girl.

Grandma West left us this morning to travel to Salt Lake City and see her other grandchildren, Sophia and Lucy. But she had a pleasant time in Gainesville visiting her newest grandchild.

Ella had a great night. She was awake for a short time this morning as shift change approached and the nurse read some fairy tales. She noted that Ella listened and was calmly looking around her room.

Her success in adjusting to CPAP was evident in her blood gas this morning. The respiratory therapist, Marla, was beside herself when she had to note the numbers on the flowsheet, ph=7.33, cO2=44, pO2=77. At this stage, these are excellent numbers for Ella.

If you remember, yesterday they were a bit concerned that she was breathing too hard and had too much carbon dioxide in her system. Part of it was likely because she was agitated, so they even gave her a small dose of versed to help calm her down and settle her into CPAP.

Apparently, that did the trick. She has not required any more sedative and has adjusted to the air blowing through her nose through the cannulas. She is at a rate of 6 on the CPAP machine (pressure for the lungs) and at 55% oxygen. They will look to ween these numbers over the coming days.

They did 5 blood gases in the past 24 hours to see how she adjusted to CPAP. Each time, Ella’s body took baby steps in the right direction. It is hard to believe that her lungs are properly exchanging gases with such little assistance. She is really working hard!

Because her blood gas this morning was so good, they have decided to remove the UAC line from her belly. This one monitored her blood pressure and gave them another line to draw blood and administer meds. Typically, UAC lines are in for a max of 1-2 weeks. One of the nurses admitted that she has never witnessed a UAC line staying in for so long. In Ella’s case, they needed it. But it is another area that can place her at risk for infection, so they want to remove it.

This means less blood gases to report. They will simply base their decisions on how she is behaving clinically (watching her saturations on the monitor, listening to her chest and breaths, watching her behavior, etc.). Also, this means there is one less cord attached to Ella. Slowly but surely, she is getting rid of all of them.

After dropping off Grandma at the airport early this morning, we stopped to peek in on Ella. Nurse Angie is taking care of her. As always, it was nice to see a familiar face.

Ella looked peaceful as she slept on her belly. Nurse Angie explained that wanted to let Ella have some belly time before they remove her UAC line. Once they remove it later today, Ella will need to stay on her back and sides so they can monitor the area.

The Lord is so good to Josh and me. As each day passes, we are amazed at how He has worked in all of our lives over the past weeks.

He continues to be faithful and let us know that He is there all the time, overseeing every detail of Ella’s care.

And each time an obstacle arrives along the path, we hear Him whispering to “trust Him”. Trust Him in everything, in every moment.

Psalm 28:7-8
7 The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.

8 The LORD is the strength of his people,
a fortress of salvation for his anointed one

Oh the sweet sound of our baby’s cry!

Ella was extubated at 9:15am EST this morning. Dr. Kays indicated that he didn’t expect her to make much of any noise at first because of her vocal cords being so separated. To our surprise, including Dr. Kays, Ella did in fact cry…and continues to do so as I write this =).

At the moment nurse Andrea and Tina are doing what they can to console her. Her saturations look good, hovering around 100%, but she’s still trying to get used to this contraption around her head and up her nose. Fortunately, the cannula’s they are using are not very long, about a centimeter.

She has moments where she will calm down, but then starts fussing again. This is pretty typical with a baby on CPAP; they just don’t like it.

We hope that she’ll get used to it enough to settle down and sleep. They’re trying a binky (pacifier) right now, but it isn’t helping. Also, trying various positions to try to get her comfortable: right side, left side and now she’s on her back.

The blood gas they just took at 10:45am was not the best: pH=7.14, cO2=60, pO2=80. She has been breathing quite heavy for the last hour at 77% oxygen support, but we hope she can calm down.

Nurse Andrea just gave her some versed (sedation medicine) to see if that will do the trick.

Praising God for this huge step and continue to pray for Ella’s forward progress, and for improved saturations. They will continue to monitor her and take blood gases throughout the day, to see if she can remain on CPAP.

p.s. If anyone has heard from Tina’s Mom or Jack within the last 18 hours, please let us know. As of noon yesterday, they were stuck in the middle of the fires at their house in San Diego. We heard that they were able to fight them off with the well water they had until the power went out and the pump stopped. Then, they resorted to shoveling dirt on the fires to protect their house. From what we could tell from the news reports, the fire looks to have burned all around them. Please join us in praying for their safety.

UPDATE (2:30pm EST) by Tina: Once we left the hospital this morning, Ella remained fussy for a bit. Nurse Andrea suctioned her mouth and nose. Once she did that, Ella could breathe better and fell right asleep. Maybe that is what she was trying to communicate to us this morning! Anyway, sleeping for her is really good right now – – it keeps her calm and when she is calm, she breathes better.

Ella remained asleep for about 1.5 hours, then she just woke up and calmly looked around. They took another blood gas and it was a little bit improved, ph=7.21, cO2=65, pO2=120. Dr. Kays says that these blood gases are acceptable for her right now and it is a good sign that she is slowly moving in the right direction. As I type this, she is sleeping and her saturations are 100/100.

Nurse Andrea thinks she is doing really well and feels that she just needed some time to figure out this breathing thing on her own with the nose cannula.

Psalm 28:6
6 Praise be to the LORD,
for he has heard my cry for mercy.

Thank you for continuing to pray for sweet Ella. In addition, thank you for lifting up my Mom and Jack. My heart is heavy and I am very concerned for them right now. But as the last 13 weeks has certainly taught us, it is wise to rest in Him during these times.

Philippians 4:6
6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

UPDATE (3:30pm EST) by Josh: Uncle Cliff just sent a text message to my phone letting me know that: “The fire sheriff said the area already burned (where Mary and Jack live) so they should be OK. He will go check on them soon and call (aunt) Diane back.” This sounds like good news because the last update, from them yesterday morning, indicated that the area around their house was already scorched, but they were OK.

UPDATE (6:30pm EST) by Josh: Mary and Jack are ok. Uncle Cliff just talked to Mary. Click here to see the email with the details.

Praise God – – Ella’s fever is gone. We certainly don’t want any curve balls before extubation.
 
On that note, Ella’s blood gas at 7:30am was excellent, blood gas, ph=7.46, cO2=42, pO2=107.
 
When we walked in last night, her room looked a bit different. They switched Ella to a crib. We were pleasantly surprised! And apparently, Ella loves it. They placed a mobile right above her head and every time she is awake, she loves to watch all the animals move around. I can imagine that it is more exciting to look at than the heater in the top of her other bed.
 
Then, nurse Kathleen had to take her out of the crib to weigh her, so she asked if we wanted to hold her….uhh, YEAH! That did not take too much thought. I was able to get some great pictures of Ella in Daddy’s arms.
 
Ella lost weight and is down to 7 lbs, 9 ounces. This is actually a good sign right now, since Ella has had such a problem with fluid retention. We think that Ella is slowly moving toward her “real” weight.
 
Grandma West arrived yesterday afternoon and had her first opportunity to see Ella in person. She loved her time.
 
Today is another HUGE milestone for Ella and we’re really excited for her. The extubation is supposed to happen sometime after 3pm EST today, so we will definitely be doing more than one post today!
 
We know extubation may not work the first time for Ella, but we are so hopeful that it might and that she can be ET tube free. It has been so tough to watch her gag the past few days.
 
Thanks to everyone who continues to lift Ella up for her daily needs. Please pray throughout today that Ella’s extubation will go successfully and that she can breathe on her own.
 
Psalm 9:10
 
10 Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.
 
UPDATE (6:45pm EST): Dr. Kays just walked in and talked to us. He was still dressed in his business suit and tie. He had a meeting out of town earlier today and just returned. He was expecting to be back around 2:30pm, but his meeting ran late.
 
Since it is so late and there are less staff here at night, he wants to wait to extubate till tomorrow morning at 9am. We were a bit bummed, but know that God has perfect timing.
 
Please continue to pray that Ella will remain stable throughout the night and that she will do well with extubation tomorrow morning.