Ella had another great day of healing.

Her fentanyl has been decreased to 1.5 mcg/kg/min or .2 ml/hr. They plan to wean two more times at a rate of once every other day, except for weekends. This means that maybe in 5 days or so, they will have discontinued the fentanyl. This would be great. She has been on it since she was born. Although they have been tapering it ever so slowly, we will still be waiting to see if she has any signs of withdrawal.

Her CPAP stayed at a pressure of 5 throughout today. If she has a stable night, the plan is to wean it to a pressure of 4 tomorrow. They will monitor her for Wed, Thurs and Friday to see if she can tolerate that flow of pressure and keep her stats high. If all goes well, they will leave her on a pressure of 4 for the weekend, just so she can gain more strength. Then next week, they would look to wean it to a pressure of 3.

Ella’s feedings are going well. They started to move toward bolus feedings. Instead of a continuous flow of 20ccs per hour, they have switched it to 60ccs over 2 hours, wait one hour and repeat. Over the next several days, they will try 60ccs over one hour, then 60ccs over 30 minutes, then 60ccs in a bolus feed (all at once). This is the final feeding goal for her to reach before she can be discharged. Of course, we will need lessons on how to feed her via the g-tube and how to work on getting her to feed orally, but hopefully that part will not take too much time.

Her weight last night was 9 pounds, 1 ounce. Slowly but surely, she is gaining weight.

It feels good knowing that we are moving in the right direction and have a scheduled plan. Our hope and prayer is that she can stay on track and just continue to become stronger. It would be such a nice holiday gift to have Ella getting well enough to where going home is in the near future.

Speaking of getting well, Ella’s great Grandma has made improvements over the last 48 hours. As a matter of fact, she may be released from the hospital on Friday if she can continue to make progress. Thank you for the continued prayers. We still hope that great Grandma can hold on to meet Ella face-to-face someday.

I will be going on a business trip to LA for the next few days, but Ella’s daddy will be keeping all of us updated on the Bun. It is hard to leave her for several days, but she is in good hands.

I hope she can continue to sleep as soundly as she has been the past few nights…doesn’t she look peaceful?

Ella Bun had a stable day as she hung out with Nurse Marla.
 
When Grandma and I arrived, she was a bit fussy. I think she was over-tired. She wanted to be held and rocked to sleep, although it took several tries before figuring that out! Once we were in the rocking chair with just the right rhythm and position (and of course you must have the binky), she finally settled in and took a nice cat nap in my arms.
 
Her fentanyl was dropped a bit as of 10pm tonight. There are probably 2 more scheduled weans before she is completely off the pain medication. She is still at a CPAP pressure of 5 at 45% oxygen. The plan is to drop the CPAP every 2-3 days that she remains stable, all the way down to a pressure of 3. This will probably take another week or so. From there, we will see if she can handle the nose cannula.
 
Grandma is leaving tomorrow, so tonight was her last time visiting with Ella until she is out of the hospital. She will certainly miss having Grandma talk and sing to her!
 
Nurse Marla stated that she thinks that Ella is making great progress since her nissen surgery — that she looks the best that she has ever seen her.
 
A new nurse has Ella tonight – – so it made it that much tougher to leave. I am hoping that Ella sleeps through the night just like she has done the past 3 nights.
 
Par is struggling a bit with his eating (lack of a desire to eat). Please pray that he would begin to be interested in eating and that he would not encounter any further struggles. Jonathan has been making small steps forward since his repair surgery, although being on ECMO is holding up the process. Please pray that he can make the continued progress in the next couple of days, so that Dr. Kays can take him off ECMO.
 
Ella’s lungs still need to continue to strengthen, so we pray that the Lord would continue His healing. It would be a great holiday gift for Ella to be strong enough to no longer require CPAP. As we have already experienced, we need to trust in His timing.
 
I started to research the doctors in Denver that can help us take care of Ella on an ongoing basis. As you know, Ella’s care is not straight-forward and we need to find a network of doctors for her care. I am not comfortable making the trip back home unless we have a network of doctors in place. I want to know there is someone to call, as we make our way towards our front door. We will be coming back to see Dr. Kays annually, but our intial search is for a pediatrician and a pulmonary specialist.
 
We want His best for Ella Renae. Please pray specifically wisdom, guidance and discernment. Ask for the Lord to help us listen and hear His still small voice.
 
Proverbs 16:3
Commit to the LORD whatever you do,
and your plans will succeed.
 

Today was a much better day.
 
Nurse Marla was taking care of Ella – – she is on our core team of nurses. I had not seen her since she returned from the Thanksgiving holiday. She enjoys taking care of Ella and it shows.
 
When Grandma and I arrived, Ella was sleeping soundly. Without saying anything, I think she felt us staring at her. All of a sudden, she opened her eyes to take a peek. When she realized that it was us, she got excited and woke up.
 
From there, we received lots of smiles and laughs. It was a fun time. Then, Nurse Marla situated Ella into Grandma’s arms.
 
I decided to share my concerns with Marla. She has great bedside manner. She listened and was very supportive. It was a refreshing change from the prior day.
 
In the corner of my eye, I noticed that Dr. Kays was helping the other babies that were on ECMO in his Saturday attire (jeans and a Gator shirt). When I found an opportune time, I went over and asked him if I could have 5 minutes whenever he was ready. He made sure that I knew that he was fully intending on coming over for an update, but that he was just taking care of the critically ill babies first.
 
When he came over, he let me know that he is still involved and overseeing her care. I shared some of my concerns and asked for the next steps. He wants to watch for her stability on CPAP and if she does well, look at turning down the CPAP pressure to 5 on Monday (it is at 6 right now). He noted that he is not interested in “sprinting” this time (some CPAP, some nose cannula). He wants to take his time truly weening her down to a presuure of 3 on the CPAP with stability for several days before he will consider the nose cannula. But it will be a straight switch.
 
Now that she has had the nissen surgery, along with the 5 days of steroids post-op and extra diuretics (keeping fluids off of her), he wants to see if she will make slow progress forward as anticipated. If we begin to ween and she shows signs of distress at any point, then he will want to order a CT scan to look at her lungs, pleural cavity and superior vena cava to better assess what is happening.
 
As you might imagine, that was music to my ears. I just wanted a plan so we can know the next steps in her care. Plus, it was reassuring to know that he not walking out of the picture (he has been so busy with other critically ill babies that it was starting to feel that way).
 
On another note, he did mention that it is highly likely that she will need to be admitted to the hospital over the first 2 years after initial release (she does not have the headroom like a healthy baby and the slightest thing can send her back). This stirred up lots of things for me that I have already started to be concerned about lately.
 
We do not have a good network of doctors and specialists back in Denver. I can’t imagine being home for a few months and her needing to be re-admitted to the hospital…especially in a place where they do not specialize in CDH and a place where I do not have the confidence that she would be getting the best care (let’s not forget that in Denver they gave her a 20% chance of survival with no guarantee on the quality of life). Also, the reason that we came all the way out here is because it is hands down the best place for a CDH baby to be born and cared for under Dr. Kays.
 
He mentioned all the different specialists that we would need along with a strong pediatrician. I asked if he had any recommendations in Denver, but he doesn’t. He mentioned that if we were staying local, that he has the name of an excellent female pediatrician. She is smart, he respects her and even better, she has her own child with CDH. Wow, that is appealing!
 
Ella Renae is such a treasured gift from above. We just want to make the right decisions for her. I know that the Lord will guide us and provide peace in those decisions that lie ahead. As with everything else, we just need to trust in Him. As Dr. Stanley always says, “Obey God and leave all the consequences to Him. That is living life at its best”.
 
Thank you for the thoughts and prayers. I truly felt covered in prayer as I walked into the NICU to face another day.
 
Psalm 143:8
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.
 

Ella had a good day. There were no changes in her care. She is still on CPAP at 45% oxygen with a CPAP of 6.
 
There was peace of mind because Nurse Angie was watching Ella. Although the NICU was busy today, Nurse Angie is one of the best at taking care of Ella. More than anything, it is great because she is just so sweet and cares so much. You just feel it.
 
I was able to hold Ella for about 1.5 hours today which was nice. I have missed being able to hold her.
 
The rest of the time, Grandma and I took turns talking to her. We had a good time hanging out with the Bun.
 
I noticed last night that Ella seemed congested and it was not any better today. She will cough and it sounds like there are a lot of secretions in her airway. A few times today, she was clearly struggling to breathe. I can tell because she gets that frightened look on her face any time that her breathing becomes compromised.
 
I tried articulating my concerns to the nurse practitioner. However, I was told that this is a normal thing for Ella to experience based on her recent extubation. This may be correct, however it made me feel as if my input as Ella’s mom was completely discounted. All I know is that Ella has been extubated before and yet, I have never seen this type of cough.
 
More than anything, I wanted to feel heard and to know that since it was a concern of mine, they would watch it closely. It was really frustrating to feel like I was not being heard and that my opinions were completely discounted.
 
I asked the nurse practitioner about the plan for Ella over the coming days. I was never given a direct answer. Since we have been here so long and Ella’s case is not textbook, I am looking to chart her next milestone. This is important to me and I feel very frustrated that I cannot get a clear answer from the NICU staff.
 
At this point, Dr. Kays has started to step away from making decisions on her every day care, since most of the surgical work on her is complete. This leaves most of the day-to-day decisions to be made solely by the NICU staff. And it is tough when you a) don’t agree with the approach and/or b) can’t seem to get a direct answer.
 
Once the practitioner had left, I felt the rise of frustration make it to the surface and I broke out in tears. This experience is so tough and it makes all the difference in the world when you feel like your opinion matters, when you feel like they truly want to take the time to figure out what is best for Ella, when they make the extra effort to give Ella a core nurse assignment, etc. Since I have not felt the love the past 2 days in this regard, I think it just got the best of me and I needed a good cry.
 
Then, I went to leave the NICU and asked for a parking pass. They were not able to provide me with one.
 
It just felt like one of those days where every time I encountered anything to do with the NICU, it was disappointing to me.
 
Finally, we were given a visit by the social worker. She comes around periodically to check in on families. This time, she came to talk about the blog. Somehow, the staff at Shands heard about our blog and came with concerns over privacy. She wanted to know if we had received permission to discuss other babies on our blog, such as Par and Jonathan. I assured her that we had received verbal consent. And although we have received specific consent from these parents because we know them, she advised that it would be the best to only discuss Ella. I’ll be honest, I understood why they have to legally come tell me that information, but nonetheless, it was a bit discouraging (Par’s parents were approached too).
 
Since we have specific consent, here is the latest update. Par was moved to the NICU 2 today (such a blessing), so Ella will be missing him! We have not talked to Jasmine since Jonathan’s surgery. Unfortunately, Jonathan does not have a blog, so we will just need to ask that you continue to lift him up in prayer.
 
Once again, I am reminded that we came to Gainesville for Dr. Kays, not the NICU. And that I am so thankful for the other parents we have met on this journey as well as the dedicated nurses and other NICU staff that have come to know and love Ella. In the midst of all my frustrations over the past 4 months, those individuals are like a ray of sunlight.
 
Please continue to pray for sweet Ella’s recovery as well as strength for me and Josh. We need prayer for endurance. Also, we need strength to interact with the NICU staff in a godly way while still being Ella’s advocate.
 
Psalm 59:16
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.

Ella had a rough day.

Her ET tube got clogged with a mucus plug. They tried to suction it out, but they were not successful. In the meantime, Ella was having a tough time breathing and got scared. She turned her bluish/purple color and got very upset. Once she gets this upset, it is tough to console her.

They opted to extubate her since they were not able to clear her airway. From there, they placed her on CPAP. But she was so annoyed, the CPAP was not helping her much. Then, they gave her versed (sedation) to try and calm her down. That was not effective either. Next, they placed an oxygen mask over her mouth to help her. She seemed to respond to that treatment the best, but they can’t stand over her and hold it. So, they opted to try a high flow nose cannula. Initially her stats were not doing well, so they increased the cannula to the highest amount of oxygen. This seemed to improve her stats and get her to a place where she could calm down.

They took a blood gas and it was in the acceptable range, so they left her on the nose cannula and were intending to simply monitor her clinical signs and go from there. Unfortunately, Ella had a nurse that was not familiar with her. This just made the situation more stressful for Ella and the nurse.

By the time I was able to visit in the evening, she was still on the nose cannula. The nurse and respiratory therapist were noting that this was the best she looked all day. But as soon as I saw her, she did not look great. She had a difficult day, but right in that moment, her breathing was labored. Her saturations were low to mid 90s. She was having a tough time – – more than normal for Ella.

My intuition told me that this was too big of a step for her. Immediately, I asked what the plan was for her care. I was told that they were intending to leave her on the nose cannulas and just monitor her. To me, it was obvious that this was not the right thing for Ella.

I asked to speak to Dr. Kays. If in fact they were going to continue down this path, I wanted my concerns voiced to him and/or I wanted a better explanation as to why this was the right choice for Ella.

Dr. Kays had already left the hospital for the day, but he called in. After talking with the nurse practitioner on staff, she came back and stated that sedation was not the answer and the plan was to place her back on CPAP. This felt like the right decision.

The nurse and respiratory therapist were so hesitant to place her back on CPAP because of her negative reaction earlier in the day. But I could just tell that Ella still needed the pressure to keep her lungs expanded.

Since I knew this was going to be tough for Ella and not something that she would like, I suggested that they let me hold her and then switch her to CPAP. This way, I could place her binky in her mouth and try my best to console her with the change (she has missed her binky over the past week).

Thank the Lord – – it went off without a hitch. She made a sad expression, but was over it in about 2 seconds. She let me hold her and began working away on the binky. From there, her saturations increased and stayed pegged at 100. CPAP is exactly what she needed.

I was able to hold her for about 30 minutes and then it was time for shift change, so I had to put her back in her bed. Fortunately, she seemed to stay in a good mood and I stood by her bedside until I couldn’t any longer.

Some other good news for Ella: her Grandma decided to make a last minute trip out to Gainesville! So during shift change, I went to go pick up Grandma, so that we could go back and visit Ella.

When we arrived, I offered to let Grandma hold Ella. This was her first time holding Ella. The last time that she saw Ella was only a short time after her repair surgery in late August, toward the beginning of Ella’s fluid issues. So, Ella looks a lot different!

Once they settled, Grandma didn’t move for 1.5 hours. Her and Ella seemed content to stay put. At this point, it was obvious that Ella was doing much better. She was interactive and looked comfortable. Thus, it was a difficult day with a good ending.

We are unsure of the next steps other than watching her lungs carefully and monitoring her. There is a good chance that she may need to be re-intubated if she continues on CPAP for a while. As we learned last time, her nares can get so swollen that the CPAP is no longer effective in providing pressure and places Ella in a position where she cannot breathe. We are going to try and avoid that scenario and try our best to be proactive. I’m finding it more important than ever to be a vocal advocate for our baby girl.

Par did well today and I did not get an update on Jonathan, but can peek over and see that he is still on ECMO. Grandma Kathleen is hanging on and fighting for her life.

Please continue to pray for Ella’s strength in her lungs as well as the needs of Ella’s roommates. Finally, please lift up Ella’s Great Grandma and ask that the Lord would heal her body.

We thank you for your support and continued prayers. It means so much during this time.

The Bun had another solid day of recovery.

She slept most of the night for Nurse Janet, one of her favorites. Then during the day, she spent a lot of time sitting up in her chair listening to her baby Christmas tunes and eyeing those that passed by her bedside, hoping to reel them in for some attention.

In the morning, her fentanyl was decreased slightly from 3.5 down to 3.0. Hopefully, they will wean this pain medicine just slightly every other day or so by .5 until it is discontinued. They have warned that since she has been on fentanyl since she was born, she may have withdrawal. On that note, we will be watching closely for changes in behavior.

Also, they decided to start Reglan and Zantac up again to help Ella digest her food and move it through her system. She was on both of these meds before the nissen surgery when they were feeding her, and just started them back today since she has reached full feeds. Her belly seems to be tolerating the full feeds of Portagen (20ccs per hour continous) and once again, we are happy to report several poopy diapers. This just means that everything is moving through her system as it should since her nissen surgery one week ago today.

Ella had another chest x-ray this morning, but Dr. Kays did not come by till around 2pm to assess and make any needed changes. The chest x-ray did look improved, but only slightly. He moved the vent settings down to 6 breaths per minute at 40% oxygen. His plan is to extubate tomorrow.

When I was visiting Ella, it seems about right to extubate tomorrow. We did not want this too soon, but at the same time, you can tell that the tube is becoming more and more uncomfortable for her. Although she was happy and we were having a nice time together tonight, she paused several times to gag on the tube.

We hope and pray that this is the last time that she needs to be intubated. Once we go back on CPAP, we would like to not look back and visit this stage again. It is just a matter of making sure that her lungs are strong enough and that she does not have any setbacks.

Par is doing amazing. In fact, he is doing so well that he will probably get moved to the NICU 2 within the next day or so. Today, his UAC line was removed and they had a chance to try feeding him with a bottle containing 1cc of formula. Although it was a bit different for him, he did seem to respond and swallow. Such great news. Please continue to pray that he can cruise through the next challenge of feeding.

Jonathan had surgery today starting around 3pm. When I left the NICU around 11:15pm, I could still look over and see Dr. Kays performing surgery with his team at Jonathan’s bedside. That is a really long time for surgery. I ran into Jasmine in the waiting room and she filled me in. Apparently, his liver was in his chest which came as a complete surprise to Dr. Kays (not apparent on the x-rays prior to surgery). In addition, Jonthan formed blood clots in his chest around his lungs. So Dr. Kays had to spend extra time delicately removing the blood clots. Please continue to pray that having the repair surgery will make a big difference and his body can truly begin to heal.

Two more baby girls have joined the NICU that are in the “CDH area”. We know one baby girl has CDH for sure, but are not 100% positive about the other baby. Either way, they are both on ECMO. We do not know the families or the baby’s names, but ask that you lift them up in prayer as well. Being on ECMO means that they are both very ill.

Josh left yesterday afternoon to go and visit his Grandma at the hospital in Southern California. She has been having a tough recovery. Her diagnosis is congestive heart failure. This means that her heart is not pumping as well as it should to deliver oxygen-rich blood to her body’s cells. It happens when the heart’s weak pumping action causes a buildup of fluid or congestion in the lungs and other body tissues.

So, it is somewhat similar to what has been going on with Ella. Grandma’s lungs are too “wet” and so they are giving her lasix to help get rid of the fluid. Earlier, they were not sure if her kidneys were functioning. Later tonight, we received a praise that her kidneys are functioning and therefore some of the fluid is leaving her body, making it easier for her to breathe. She still needs a lot of prayer. Unlike Ella, Grandma has an infection in her lungs which is making her recovery even more difficult.

Lord, help us to surrender and trust in you at all times, in all circumstances. You know the petition of our hearts. Help us to lay down everything in complete submission and wait on you for your direction, guidance and peace.

Psalm 9:10
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

It is hard to believe that it has been 18 weeks.

Nurse Andrea had a great day with Ella. She was a bit fussy this morning, but apparently they were trying to place a new IV line and Ella was not appreciating the hands-on treatment! I don’t blame her!

When they drew her blood this morning for labs, her hematocrit count was low (the hematocrit count calculates the percentage of red blood cells per micro liter of blood). So, they ordered some blood for her and needed a new IV line to deliver it, thus the bandage on her head.

Ella’s food continued to be increased last night and throughout the day. They are capping her feeds at continous flow of 20ccs per hour and she will be at that volume by 10pm tonight. So far, she seems to be tolerating the feeding well. This is a blessing.

You can tell that having the nissen surgery was the right move for her. Even though she is almost at full feeds, I have not seen any reflux symptoms and she is in a great mood.

Apparently, a couple of staff members were trying to get her to smile today. After several unsuccessful attempts, Dr. Kays approached the bed to check in on her and she gave a HUGE grin. Nurse Andrea said it was just priceless.

Dr. Kays thought about extubating Ella today and asked the nurse and respiratory therapist. After collaberating, they opted to wait until tomorrow morning, get a chest x-ray and make a decision from there. Please pray that her chest x-ray tomorrow looks better. We are hoping that her lungs are no longer “wet” and that she is ready for CPAP.

Par took another huge step today – – he is off CPAP and is breathing via the nose cannulas. So far, so good. We’re so happy for the amazing progress that he has made. Thank you for all the prayers. I have not seen Jasmine today for an update on Jonathan, but either way, please pray for Jonathan. He is scheduled to have his repair surgery on ECMO tomorrow, which is very risky.

Finally, please pray for Josh’s grandma (her name is Kathleen). Ella wants to meet her great Grandma some day, so we lift her up and ask for the Lord to heal her body. She is in the intensive cardiac care unit at Hoag Hospital in Newport Beach, CA (heart and lung issues currently). She went in the hospital this past weekend and is having a tough recovery.

Thank you for all the prayer support. We couldn’t do it without the love of the Lord guiding us each day in His truths as well as the support from all of you out there. You minister to our hearts each day with your thoughtful words and prayers (even those of you that don’t post – – we know you are with us too).

Psalm 103:1-5
1 Praise the LORD, O my soul;
all my inmost being, praise his holy name.

2 Praise the LORD, O my soul,
and forget not all his benefits-

3 who forgives all your sins
and heals all your diseases,

4 who redeems your life from the pit
and crowns you with love and compassion,

5 who satisfies your desires with good things
so that your youth is renewed like the eagle’s.

Ella had a great day.
 
Nurse Andrea said that Ella spent a good amount of time sitting up in her chair and being social. She even fell asleep while sitting upright in her chair!
 
By the time we arrived this afternoon, Dr. Kays had reduced her ventilator settings down to 8 breaths per minute and 40% oxygen.
 
Also, Dr. Kays decided to start feedings of the Portagen via the g-tube (2ccs/hour of continuous feeds). This is the first time that the Bun has had any food in her belly since her surgery (they have just been giving her IV fluids the past few days).
 
Ella’s nose seems to be healing quite well. We really wanted to see the swelling and inflammation decrease before she is placed back on CPAP.
 
When we first approached Ella’s bed, she was asleep. Then, she must have heard our voices. All of a sudden, she opened her eyes, recognized Mom, and then gave a big smile! It was so cute.
 
We had a fun time hanging out. Dad sang improv tunes to her which made her grin (there is a video below for your viewing pleasure). Then, Mom read her stories and talked to her. She was full of smiles which means that she has to be feeling better. It was the first set of grins and giggles that we have seen in several days.
 
We are not sure of when Dr. Kays plans to extubate Ella. If not tomorrow, I’m sure it will be sometime over the next few days. We’re not in a hurry to have this done because we feel like it is just giving her extra time to gain her strength.
 
Par is progressing along just wonderfully – – praise God! Please join us in praying that he will make huge strides forward, so that he can take on the next challenge of feeding. Jonathan still needs prayer for his liver and kidneys. They continue to not function at a level where Dr. Kays is willing to perform the repair surgery. Please pray for this need specifically as well as providing strength to Jasmine, his mom. Finally, pray that Ella’s lungs get stronger and that she tolerates the feeds via her g-tube.
 
Father, we thank you for sweet little Ella. We praise you for the successful surgery and the progress she has made over the past few days. Lord, you know exactly what she needs to heal and get stronger. We pray for wisdom for Dr. Kays and staff.
 
Also, we lift up Par and Jonathan to you and ask that you watch over their parents and that you continue to work out your perfect will in their healing process.
 
Lord, we thank you for Ella’s smiles…they are a reminder of your unfailing love for us. We trust in your timing of all the details on this journey.
 
Thank you for loving us…in your precious name, Amen.
 

I had a chance to talk to Dr. Kays post-surgery last night.

He said that Ella did well through the procedure. First, they placed a central line. They tried through her right leg and it wasn’t working, so they switched to the left leg. From there, it was threaded sub-cutaneously up to her right side near her chest.

Normally, they place a central line through the neck area, but based on Ella’s history of having a collapsed superior vena cava and all the work she has had done in the chest region, they wanted to avoid that area. Also, since the surgical repair was on the left side, they threaded it over to her right side to remain out of the way.

Dr. Kays hopes to use the central line as much as they need to over the next several days. It has risk of infection just like any lines they place in Ella, so he does not want to see it in there any longer than 2 weeks.

The nissen surgery went well. Since Dr. Kays could not find a piece of paper, he began drawing a visual of the procedure on his scrubs! (Here is a great page that I found if you want to read more about the overall reflux issue, nissen procedure and g-tube). They took the upper section of her stomach and tied it around the lower part of her esophagus. This creates a drawstring-like effect. When Ella’s stomach becomes full, it will tighten and not allow for reflux. Also, he noted that she now has a “cute button” (he was referring to her g-tube).

If you remember from Ella’s repair surgery, her appendix was relocated to her left side beneath her tummy. Apparently, it is common to remove the appendix during a nissen procedure. It is not something that they look for or search for, but when it is apparent and seems like it might provide future complications, they remove it. So, just like her parents, Ella no longer has her appendix!

Dr. Kays was able to remove the gortex patch that lined Ella’s abdominal muscles (note: this is NOT her diaphragm gortex patch. Ella’s tummy was going to be too tight when he moved all her organs back into her belly during the repair surgery, so he had to line her abdominal muscles with an additional gortex patch when he closed. Since she is bigger, he was able to remove that extra patch). That was a positive. He did note that her liver had adhered to the patch slightly, but he was able to safely pull it away.

Ella will be off of food for 3 days (yep, no food for her first Thanksgiving). The first time they will try food through the g-tube will be Saturday. From there, they will give small amounts and build her back-up to full feeds through the g-tube.

He ordered for Ella to be given steroids 2x per day for the next 5 days. This should help her healing overall, but especially for her lungs to gain strength.

She was given a one-time dose of versed (sedation) yesterday for the surgical procedure as well as an increased amount of fentanyl (pain meds). The fentanyl was bumped slightly to help with her healing over the next several days. Once she has stabilized, they will begin to slowly wean it.

Since she was sedated last night, he bumped the ventilator to 40 breaths per minute at 50% oxygen.

The plan is to get another chest x-ray on Friday and see how her lungs have progressed. As soon as possible, he wants to extubate her and put her back on CPAP.

Dr. Kays did mention that we are not sure how CPAP and the nissen procedure will work together. Most babies have the nissen procedure when their lungs are in a better state and they do not require CPAP. So he warned that we are going into a bit of uncharted territory. The potential side effect is that since the CPAP is blowing continuous pressure into her lungs, that part of the air can also go into her tummy. Now with the nissen procedure complete, she will not be able to get rid of the air as easily. This might cause her additional discomfort.

Also with the nissen, he mentioned that Ella might do something called “retching”. If her belly gets too full, her body might try to spit up, but she will not be able to. Again, just another side effect of the procedure. As we discussed before though, the benefit is no heartburn/reflux symptoms for Ella as well as no aspirating into her lungs!

We are hopeful that this surgery not only solved her reflux issue, but will play a big part in helping her lungs to get stronger. Dr. Kays thinks that the reflux was contributing to the issues she has had with her lungs recently.

We pray that this is the last major surgery for Ella. She has been through so much already in her short life. Please pray that her body will heal well and that when they begin to feed her via the g-tube on Saturday, she will tolerate it. Also, please pray for good chest x-rays over the next few days. Already it has been nice to have her off CPAP because her nose is getting a much needed break. However, we want her to get strong enough to move to the next step.

Thanks for all the love and support for Ella and her roommates. On this day of Thanksgiving, we are thankful for these little ones. They are truly a gift from above.

Psalm 107
1 Give thanks to the LORD, for he is good;
his love endures forever.

Psalm 111
1 Praise the LORD.
I will extol the LORD with all my heart
in the council of the upright and in the assembly.

2 Great are the works of the LORD;
they are pondered by all who delight in them.

3 Glorious and majestic are his deeds,
and his righteousness endures forever.

4 He has caused his wonders to be remembered;
the LORD is gracious and compassionate.

Ella has stabilized since being re-intubated yesterday morning – praise God!

Most of the day yesterday, she was sedated. They tried to place another picc line in her arm, but it was unsuccessful.

Also, the IV line in her foot came out again this morning. So, the nurse had to locate a vein to place another temporary IV. Apparently, the largest visible vein was on her head, thus the bandage.

She had a chest x-ray done this morning, and it does look improved but she still has a long way to go. They did take a blood gas and it was good – ph of 7.54, cO2=47, pO2=71. Based on these results, they did make some adjustments to the pressure on the ventilator.

When Dr. Kays visited Ella this morning, he decided he would take Ella to the OR to place a central line today since they need a more permanent solution for access. After looking at her recent stats and pacing around for a bit, he decided that since he was taking her to the operating room, he would do the nissen surgery and g-tube today. Although the chest x-ray isn’t quite as good as he would like, she is stable enough overall. This came as quite a surprise.

We are told that the surgery will be taking place around 1 or 2pm EST. As always, we will keep you updated with information as soon as it is available.

When I arrived to visit Ella this morning, she was awake and looked comfortable. Her beautiful blue eyes were staring around and her color was good.

She has not required any additional sedation since yesterday when they tried to place the picc line in her arm. The fact that she has not required extra sedation is a good sign: as her parents, we know that this means that she must be feeling better.

As I finish this post, she has peacefully fallen asleep.

Looking around at Ella’s roommates, Par continues to make strides forward – – please continue to pray for his journey.

Also, I had a chance to talk to Jonathan’s mom this morning. She was in the waiting room because they are switching out the ECMO circuit. This is the 2nd time they have switched it out. Right now, Jonathan’s liver and kidney are not performing well. Both of these need to improve before Dr. Kays will discuss the repair surgery. Keep in mind that Jonathan was born on 10/17 and has not had repair surgery yet – – he has not been stable enough. Please pray for Jonathan and his family.

And, please pray for Ella and her surgery. Pray that the Lord would keep her strong and stable throughout the procedure. Finally, Josh and I have not been feeling 100% health-wise the past few days. So, please pray for our health to return – – not quite as much fun wearing masks in the NICU and taking a risk of infecting Ella!

Thanks to all for your love and support during this time.

UPDATE 2:30PM EST (by Josh): Ella was just wheeled off to surgery. Please continue to pray.

Father, we lift up our baby girl to you. We know you are there with her right now. I pray for the skilled surgeons hands, Dr. Kays, Dr. Paddock, and the entire staff. Let you presence be sensed, and let your will be done. We praise you Lord for bringing us this far, and that we even have the opportunity for this procedure to be performed. You are a loving and gracious God, and we know that nothing is out of your control. Thank you Jesus for Ella Renae. Amen.

UPDATE 5:10PM EST (by Tina): I am in the waiting room of the NICU. Brenda, someone who is assisting Dr. Kays, just called the front desk and asked to speak with me. They just completed the central line and now they are beginning to work on Ella’s belly. Ella is doing fine – – she just wanted to call and let us know that everything was progressing along. Thanks for all the support and prayers.

Psalm 92:1-5
1 It is good to praise the LORD
and make music to your name, O Most High,
2 to proclaim your love in the morning
and your faithfulness at night,

3 to the music of the ten-stringed lyre
and the melody of the harp.

4 For you make me glad by your deeds, O LORD;
I sing for joy at the works of your hands.

5 How great are your works, O LORD,
how profound your thoughts!

UPDATE 7:00PM EST (by Tina): Dr. Kays just called up to the NICU wait room. He let me know that Ella behaved herself during the entire procedure and that they were able to get everything completed. They are on their way to bring Ella back upstairs to the NICU. Although he was short and did not give any details, at least we know that Ella remained stable and that the procedure is finished. I hope to see Dr. Kays a bit later to see if I can get some more information. Thanks for the prayers.