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 thank you that you know us better than we know ourselves. That you know exactly what we need and what it takes to draw us into a closer relationship with you.

May Ella’s life continue to be a testament to your strength, wisdom and sovereignty.

Help us to continue to obey and listen to your voice, so we may become the people you want us to be.

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

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

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.

Ella had a great night. She had such a good blood gas at 8pm, that they weened the vent down to 6 breaths per minute and 40% oxygen! This is the lowest vent settings that Dr. Kays ordered.

One of the nearby CDH babies was having his repair surgery last night. This led us to see Dr. Kays in the NICU.

He was pleasantly surprised by her progress and pondered the idea of extubation. Then, he asked if we had seen her chest x-ray from the morning. We hadn’t and neither had he, so we followed him to take a look.

Unfortunately, it was fairly hazy. I asked if this could be fluid build-up again. He mentioned that he cannot tell with the x-ray, although it was not as good as some of the prior ones.

With this information, he decided to wait until Monday and re-assess.

She did have another good blood gas at 8am this morning, ph=7.38, cO2=47, pO2=62. There is nothing to ween on the vent, so we hope the next couple days will just mean that she can get stronger.

He did warn us that even if he tries to extubate, that some babies do not tolerate it well initially and end up being placed back on the vent. But since there is no more vent settings to ween at this point, it is something that we will need to try.

Her weight has remained constant at 8 lbs, 1 ounce. Currently, she is sleeping soundly with saturations at 100/100.

If Ella can maintain her good blood gases throughout the weekend, he may try extubating her early next week.

Please pray for stable stats this weekend and a clear chest x-ray for Monday.

 
Ella remained stable last night and today. She seems a bit more fussy than usual. The nurses think her changed behavior is due to the weening of her pain and sedative meds.
 
Her last blood gas at 8am was good, but not quite enough to ween: ph level=7.36, cO2=54, pO2=89. So, she is staying at 14 breaths per minute. The orders from Dr. Kays is to ween the ventilator if her cO2 is below 52.
 
Yes, it was glorious last night. It was the first time we were able to hold Ella! It was even that much more special since Nurse Michelle was there to help us!
 
It is quite a production to hold Ella simply because she is still so connected to the ventilator and so many lines. But Nurse Michelle made it happen!
 
Josh and I were both in shock that it was actually happening. Surprisingly, neither of us got teary-eyed. But it was so amazing to have that time with Ella. We have been more emotional today, just reflecting back on the experience.
 
Lord, we thank you for your healing hand. We thank you for your faithfulness in bringing Ella to this point. What an amazing testimony of your power and strength!
 
All we keep hearing is to obey and leave the consequences to you. Nothing is too big or too complicated for you. We thank you for the peace and serenity that you have provided during this stretching time.
 
We praise and thank you for this amazing little girl, who was made perfectly in your image. May she be a constant reminder for all of us to draw near to you and trust.
 
In Jesus Name, Amen.
 
Below is a video of my first time holding Ella.
 

Can you believe it? God is SO GOOD!

Ella’s blood gas at 8am was excellent: ph level=7.37, cO2=55, pO2=155. Also, her chest x-ray looked good. In the last 24 hours, her urine output was high at 373.

When I spoke to Nurse Angie, her saturations were 100/100 and she was sleeping soundly on her belly. I asked about the chest fluid output. Nurse Angie confirmed that there was only a trace since 7am. This was what we heard from the nurse last night too. That was a very good sign.

So this afternoon, the phone rang. It was Dr. Kays. He started off by telling us that he removed the chest tube on her left side! He confirmed that he thinks the fluid issue is resolved and she is chest tube free! Praise God!

The next step is to continue weening the antibiotics, octreotide, fentanyl, and versed meds over the next week. Also, to make steady progress by weening the ventilator. If Ella responds well, he said that she might move to CPAP (Continuous Positive Airway Pressure) in the next 3-5 days!

When infants are disconnected from a mechanical ventilator, often they require a form of assisted breathing called nasal continuous positive airway pressure (CPAP). A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby’s nose, which is hooked to a machine that provides oxygenated air into the baby’s air passages and lungs. The pressure from the CPAP machine helps keep a baby’s lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own. (www.kidshealth.com)

Dr. Kays let us know that they are moving Ella again to a different room in the NICU. There is another baby coming soon that might need ECMO, so they are moving Ella to make room for the new baby.

No chest tubes for Ella is another HUGE milestone. Thanks for your continued prayers and celebration with us on this day!

Yes, we will be asking tonight when we will be able to hold our baby girl…we’re so looking forward to it!

Yes, today Ella is 12 weeks old! The last time they weighed her, she was 8 lbs, 2 ounces. She is still battling edema, so some of the weight could be from fluid retention. But she was born at 5 lbs, 6 ounces, so that is tremendous progress.

Speaking of gaining weight, we found out that Ella was removed from her IV food this past weekend (HAL & lipids) and is now relying on her feeding tube of Portagen for all her nutritional needs.

A side effect that they see in some babies is an elevated bilirubin count, as the body adjusts, causing jaundice. So, Ella is sporting a bit of a California tan the past couple of days. Maybe she is just missing Uncle Rick and Cousin Megan? In any case, they expect that this will go away by next weekend or they will investigate further.

Since Ella’s 2 chest tubes were removed yesterday morning, she is responding well clinically. They are holding off on a chest x-ray, unless they absolutely feel it is necessary. Instead, they are just using her saturations, blood gases and overall behavior as an indicator of how well she is doing.

Her saturations have been high throughout the night and day so far. The last blood gas at 8am was excellent, pH level=7.41, cO2 = 53, and pO2=95. So Dr. Kays went ahead and weened the vent a touch more, down to 24 breaths per minute.

They are still changing Ella’s position every 4-6 hours: belly, right side, left side, mid-line on her back. She seems to be tolerating all the positions fine, which is a HUGE indicator that she is feeling better and not struggling as much to breathe.

We are thankful for her recent progress. When looking at her, Josh and I still marvel about all that God has done and continues to do in our lives through our baby girl. It has been an honor and a privilege to see God’s hand working in the lives of so many.

Psalm 19:14
May the words of my mouth and the meditation of my heart
be pleasing in your sight,
O LORD, my Rock and my Redeemer.