Although Ella woke up a few times, we did get sleep last night. Thank God for the air mattresses – – that made all the difference.

I’m so glad we caught a little shut eye. I think it helped considering we had a rough morning. Ella was really congested and we could just tell that she was not getting better. The PO Lasix (oral form) did not make a difference and we were ready to let them know that we were not interested in testing it any more at this stage.

The pulmonary team has been treating her fluid issue from a chronic, long term management perspective. This is really important, however with surgery looming in the coming days as well as a holiday weekend where medical professionals are limited, we want to switch to acute mode. We know Ella needs to get more dry and we want to start to see her condition improve. I don’t think that is too much to ask considering that we have been here since last Saturday and her condition has not changed much.

The pulmonary doctors have admitted that the combination of diuretics that might work right now to manage her fluid might change after surgery because they think that the hiatal hernia is a major contributor to her overall issues. The doctor came in to do rounds this morning and discussed wanting to continue the PO Lasix, maybe just increasing the dosage. Since we have so much experience with PO Lasix not working, we tried to explain that we were not comfortable with that course of treatment. We want to use something that we know works – – and right now – – that is IV Lasix.

The pulmonologist is not convinced that IV Lasix works and tried to sell us on PO Lasix. When he was not able to convince us, it became very apparent that he was frustrated. Unfortunately, he started to show attitude, not something you expect from a professional. I don’t think he is used to a collaborative method where parents are so involved in the decision-making process. I don’t think he wants to have to sell his ideas and the reason why he wants to take a certain course of action. Or if he does, he is not used to parents that are armed with information and challenge him to further explain when things don’t seem to line up.

Here’s the hard part: this is a great doctor and I want to rely on his expertise. He has vast medical knowledge. We have extensive knowledge when it comes to our daughter and what works for her. A great doctor is able to take both perspectives and come up with a good plan of action, so all parties feel good about the next moves. It seems like we were able to do that over the past few days, but then, Josh and I were not being very aggressive. We were trying to give him the freedom to treat as he saw fit. We became more aggressive today when we have been here since last Saturday and she is not showing signs of marked improvement.

It was hard for me. I was offended by his attitude and how he patronized us. In the end, it doesn’t matter. But I’m certainly not looking to make enemies at the hospital either. I don’t like the tension. This happens every once in a while with doctors and nurses. They don’t appreciate that we are so involved and are armed with knowledge. We question and ask and need to be convinced that a course of treatment is the best for Ella. If it doesn’t make sense, we want a better understanding. This adds more work to their job of practicing medicine.

So once the meeting was complete, we convinced him that we want another IV in Ella, so she could get IV Lasix. If we are going to stick with Lasix and try it, we want to give her IV Lasix so it will be more fast acting. And trust me, that was a hard decision. Most of you know what a tough stick Ella can be and how getting an IV can be really exhausting and take several attempts.

Our nurse helped us find a good stick. Her name was Stephanie from the flight team. She tried once in Ella’s hand which was unsuccessful. So she moved to her left foot which is already bruised from other attempts as well as the last two IV sites. But Stephanie was able to get an IV – – Praise God. She is now on our preferred list.

The labs came back from when they did the IV. Her BUN was 18, so basically the same this whole week (it has fluctuated between 16-19 since a week ago when we went to the pulmonology clinic appointment).

While Ella’s IV was being placed, Josh went to meet a good friend who was in the lobby to visit us at the hospital. We’ve missed him so much. Although Josh sees him on a semi-regular basis, I had not seen him in well over a year. It was so nice to reconnect, get a strong hug and feel the love from a brother in Christ. It was neat for him to meet Ella in person since he and his entire family have prayed so much for her over the past months.

So, after lots of arguing with doctors, they gave her a dose of IV Lasix (twice as strong as the dose over this past weekend; 2mg, per kilo). Her first dose was at 11am and she had a diaper of 215. The second dose was at 6pm and her diapers right after totaled 115. She is due for another dose at 2am. So, her urine output has been good so far, but the other test comes in the morning. Does her BUN show that she is getting drier? And does she have any weight loss? She has not had any significant weight loss this entire hospital stay.

Also, the doctor ordered a Nephrology consult to get their opinion on the Lasix. According to the nephrologist, he did not think Lasix will work at all. Because it is another loop diuretic and she is already on the highest dose of Bumex (which is 40x stronger than Lasix), there is no indication that Lasix should make any difference, whether delivered PO or IV. And although Bumex works, we can’t give more because Ella is already at the limit for her weight and any more of the same drug could be toxic.

If we go to tomorrow morning and IV Lasix does not work either, then we will have to reconvene and figure out another way to get her to dry out. We wanted to try the IV Lasix because it has always worked before in the past. The only other option will be to use a completely different type of diuretic. The bummer is that other types of diuretics tend to have higher risk of side effects. We were trying to avoid trying anything new in Ella’s system since 1) it will be the weekend and harder to adjust with the weekend staff and 2) may not work at all and 3) might cause issues. But if things don’t show improvement in the morning, we may not have a choice.

The nephrologist also recommended getting a renal ultrasound to check Ella’s kidneys. They did this once in the NICU, but her kidneys have not been checked recently. With all the massive amounts of diuretics in her system, we want to make sure that we are keeping on top of her kidney status. We went down at 3:15pm and Ella loved getting out of her room and checking things out around the hospital. We’re hoping to hear the status of the renal ultrasound tomorrow.

One of Ella’s CDH friends named Cayden has reherniated and is having diaphragm repair surgery tomorrow. As you know, this is a major surgery. Please lift him up in prayer that the surgery will be successful and he will have a short recovery. Also, there are a few other CDH babies that are on ECMO right now fighting for their little lives. Please pray for these babies and their parents, that God will give them strength to sustain.

Please pray for Ella to have a restful night and for us to have a clear answer on her latest diuretic challenge. We would love for the IV Lasix to make a difference. But if it does not make a difference, that the Lord will provide wisdom on the next best steps for our baby girl. And for me and Josh, that He will continue to provide us with a peace that only He can provide.

Galatians 5:22-23
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

We did not go to bed until 2am and managed to get a few hours of solid sleep. Ella was up a few times when the nurse would arrive for vital signs and/or to administer the IV Lasix. So it wasn’t the best sleep, but we’re hoping for much more tonight.

We were looking for 3 things to see if she was getting more dry: clinical signs, her urine output and weight.

Clinically speaking, Ella seemed like she might be getting more dry. She seemed a little less congested and a bit more comfortable. The nurse this morning was fantastic – – she went and found the right person to stick Ella; it happened on the first try. Her labs came back with a BUN of 22 (they were 18 yesterday). Finally, she lost a good amount of weight which is the first time since admission. She went from 7.67 kilos down to 7.43 kilos.

Consistent with her history, this means that the IV Lasix is an effective tool to get the fluid off Ella. We’re glad that we pushed for it yesterday, even though we received an indifferent disposition from the doctor. This time, they delivered 2 mg per kilogram per day of IV Lasix and that seemed to have the effect we want. We think that she might need another 24 hour period of the IV Lasix before she is at the optimal point for her before surgery.

We hope the IV can remain viable. That is always a challenge for Ella. This evening, we may have lost it. Fortunately, it seemed like the positioning of the catheter. We’re hoping that there will not be a problem when we go to administer the 2am dose of IV Lasix. Also, we hope to see her BUN higher from her labs in the morning along with a bit more weight loss. The dryness in her lungs will help the secretions to simmer down, lessening her overall congestion and allow for ease of breathing and lower heart rate.

Today is the first day that Ella is not getting prednisolone. She was on a 5 day course of the steroids and now, is getting the dosage every other day until surgery. Hopefully, that dosage schedule is enough to maintain her until surgery.

My heart leaped this afternoon when I heard my email notifier on my MacBook. I looked down and noted that Dr. Partrick replied to my email that I sent earlier in the week:

Hello Mrs. West, Just wanted to let you know I did talk with Dr. Kays in Florida today. As you know, he remembers Ella well. We reviewed in detail Ella’s studies and her operative history out there. I now have a better understanding of her anatomy after the CDH repair, and can plan accordingly for the OR here next week. I will also plan on sending Dr. Kays a copy of my operative note from here. I will try and touch bases with you this coming Monday (when I am on call) or Tuesday before the surgery Wednesday. Have a good weekend!!

Although we know that the Lord will be watching over the entire procedure, it just made us feel good that our new Denver surgeon took the time to have a consult with Dr. Kays. And that Dr. Kays took the time to advise on Ella’s history.

We’ll see if tomorrow brings a more dry Bun. That’s what we would like to see. It’s a bummer that we have to spend the holiday weekend in the hospital. But we’re so thankful for Ella Renae.

We’re doing our best to focus on Him as we head into surgery week. Hanging onto words that embody the truth.

Colossians 1:9-14
For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding. And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.

Thank God for IV Lasix. Ella’s labs came back this morning and her BUN was 24, even a touch more dry than the day before.

Even the resident that has been on shift this entire week could not believe the change in her. He witnessed our argument with the doctor the other day and was happy to see that the IV Lasix is working. The doctor from the other day never came around (he still seemed indifferent towards us on Friday), but that’s okay. He will not be on service anytime during the rest of this hospital stay.

When the nurses came in to give the IV Lasix at 2am, the catheter in the IV was kinked and barely viable. So, they had to hold her foot in a certain position and push the Lasix manually. It was the same routine this morning at 10am. By the time her dose for 6pm came up, the IV had gone bad.

Now we had a decision to make. Do we try for another IV and continue to give Lasix? or do we hold off and see what happens? Even yet, do we try another combination of diuretics? We opted to go for another IV again. Since we still had 4-5 days before surgery and she is doing so much better, we want to try and keep her dry and not lose the ground we gained in the last 2 days.

So, our nurse located someone from the flight team to try for the IV, and she tried two different locations without any luck. As 7pm rolled around, it was shift change. It was Saturday night, so we found Barb again (she was successful in placing Ella’s IV last Saturday night). And sure enough, success. Although this time, instead of her foot, it is in her left hand. Barb couldn’t believe how well Ella did with the IV process this time. She still fought the process but maintained and self-soothed a lot quicker. The difference: her BUN was 16 last week and she felt crummy. Today, her BUN was 24 and she was feeling much better. We aren’t usually proactively placing an IV when she is feeling better, so it was interesting to see how much that played a part in her behavior.

We dosed her IV lasix at 8pm tonight and she will get it again at 2am. Since we placed the IV late tonight, they drew labs again and told us we could skip labs tomorrow morning. Yeah, one day of no poking. That will be a nice break for the Bun.

Grandpa brought lunch for us today and stopped by for a quick visit. It was so good to see him. Although this was his first visit to see Ella during this hospital stay, he could tell that she was feeling better.

We have a potential renter viewing our rental home tomorrow. We’re still waiting on Him for the right renters; trying to be patient.

We’re hoping that the IV Lasix will continue to have its magic effect and that Ella will continue to stay dry and maybe even get a touch more dry as we enter into next week for surgery. Praying now for continued health, strength and restoration for Ella.

Also, please pray that the Lord will provide strength for me and Josh – – that He will prepare our hearts and minds for the emotional experience ahead of us.

Psalm 95:6-8
Come, let us worship and bow down.
Let us kneel before the Lord our maker,
for he is our God.
We are the people he watches over,
the flock under his care.

Ella continues to feel better…you can just tell by her clinical behavior.

She’s still fighting a lot of secretions. There are two major components: inflammation in her lungs and the hiatal hernia. The bronchoscopy will give further insight by providing a closer look into her bronchial tubes and her airway. This should tell whether or not there is aspiration occurring which could be a major contributor to the inflammation. Also, the hiatal hernia is likely the cause of the retching and is adding to the inflammation too, since her nissen is in her chest and resting into the side of her esophagus.

The Prednisolone (steroid) was helping with the inflammation and secretions over the last few days, but since we reduced her dosing to every other day, the secretions have increased again. We’re pretty sure it’s not a virus or cold at this point because she’s not running a fever. Once we have the bronchoscopy and surgery is complete on Wednesday, we should have a better picture and can hopefully treat the secretions more effectively.

The prospective renter that Tina was going to meet today bailed out on us. We’ve not had a lot of traffic over the last 6 weeks, and summer is coming to an end. Now is the best opportunity to rent a house, and with every day drawing closer to fall, our chances are getting slimmer. We’ll see how things pan out in the coming weeks, but for now we’re going to be patient.

Tina and I are holding up ok albeit lacking in sleep. With Ella’s congestion, she doesn’t sleep as well, plus the nurses come in to check on her through the night (administer lasix, check vitals, etc). This activity tends to disrupt our sleep, and Tina has been taking the brunt of it so I could be alive to work during the day.

On top of physical exhaustion is the emotional side of things. Being here in the hospital with Ella, and all the elements that go along with it, has been very draining. We’d love to be back home, making forward progress with our girl, but this is where we’re supposed to be.

But…

Just like we experienced in Gainesville, we see glimpses of our Lord throughout the day. Whether it be someone we meet in person that is touched by Ella’s story, an email filled with love and support, or a comment left on the blog that lifts us up in prayer. Our strength is found in these, and in knowing that our Father is in total control.

The journey has not been easy, but we know God is always right here with us.

Please pray that Tina and I can catch up on rest, and that our bodies will resist any potential colds that would love to attack us while we’re in this compromised state. And especially pray for Ella, that her congestion and secretions will be minimal and that she will gain strength and stability for surgery.

We praise our Lord every day for the amazing testimony of our little girl. She is such a blessing!

Isaiah 40:28-31 (NIV)
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Today was pretty much a repeat for Ella. Her BUN is hovering around 22 and she’s behaving mostly like herself.

No, that’s not a cast. If you remember, they ended up getting an IV in her left hand instead of her foot, which isn’t the most convenient place, but with Ella you gotta take what you can get.

We did discover a little milestone today….there’s a lower left front tooth starting to break through Ella’s gums! While we’re excited about this, it’s a bit of a bummer that it’s happening on top of everything else she’s going through. But, who am I to say that there would be a better time =).

I did my best to manage Ella during last night so that Tina could catch up on her sleep. We’re both still pretty wiped though. Tina’s not feeling the greatest either – seems like it might just be from lack of sleep. But prayers are needed so that she does not catch a cold and that Ella can maintain her steady progress until surgery.

I’ll be heading in the office tomorrow and then taking Wednesday off for the Bun’s surgery.

Thanks for the continued prayers and support!

Thankfully, Ella has remained stable and is ready for surgery tomorrow. She still has congestion, but time will tell how much of that is due to her inflammed lungs and the hiatal hernia.

In preparation for surgery, her last dose of IV Lasix will be at 2am. So far, it has worked well at keeping her dry. We’re hoping that the IV remains viable through tomorrow for surgery. So far as of 6pm tonight, it has lasted. Usually right about now (48 hours) is when the IV starts to go bad. Pray that it can stay in place!

She has to stop having formula via her food pump at 5am. Normally, it delivers food until 6:30am. To help make up the difference and keep the IV in a good condition, they are going to start IV drips at 5am, once her formula stops. She can have water by mouth until 9am. The surgery is scheduled for 11:45am, but we’ll see how prompt they are with the schedule.

We did not hear or see Dr. Partrick which is a bummer. We were hoping to see him prior to the surgery. Maybe it will happen in the morning. We were just wondering how long the surgery is anticipated to last, given her medical history. Also, we wanted to see if he had any thoughts on extubation (does he normally extubate post surgery right away unless there are complications? or can we expect to see her intubated and on the vent?). Although Ella always calls the shots, we were just curious to hear his thoughts.

Thank you for the outpouring of support and prayers. It means so much to know that there are lots of you out there wishing the best for the Bun.

Along with Ella’s surgery, we have so many other facets of life that seem to be up in the air. We’re trying our best to be patient and just listen.

Please pray for our spirits and emotions as we go through tomorrow. Once again, we are asked to surrender. We’re doing our best to eliminate any anxious thoughts. The Lord will be there with Ella, guiding and directing the surgeon’s hands. We need to trust in Him, completely.

As we face another valley, we pray for Him to be glorified. We pray that Ella can be used as an instrument to bring about hope and truth.

This is certainly not a journey we would have chosen for ourselves, but rest in the truth that He chose us to be Ella’s parents. Now, we’re simply trying our best each day to fulfill the job He’s given us.

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.

UPDATE 12:30pm MST (by Josh)
Who would have thought 18 years ago, when I was sitting in my red 1967 VW Bug asking Tina to be my girlfriend, that I’d be sitting here in Denver with her and our miracle girl would be having surgery.

It was a bit emotional handing her over to the surgery team, but we confident in the care that she’s receiving. We prayed over her before she was whisked away and I think that was our breaking point emotionally.

We’re here in the waiting area now. Will update once we know more.

Trusting in Him for every step.

UPDATE 1:45pm MST (by Josh)
Got a call from the surgery team. Freaked me out at first because usually no news is good news. They just called to say everything is going fine and they’ll give us another update in about an hour.

Stay tuned…

UPDATE 3:54pm MST (by Tina)
It took awhile, but the Bun is in the recovery room. They are going to come and get us in 5 minutes so we can see her. She did fine through surgery and is extubated (yeah, no vent!). Thanks for all the prayers. We’ll give a more detailed update later.

Okay, now that things have settled a bit…here are some more details and highlights of the day.

Ella had the best night of sleep ever before her surgery. She slept solid the entire night…it was the perfect rest and she looked great before surgery.

When we went downstairs in the waiting room before surgery, a friendly face in scrubs came to visit us. Her name is Michelle and she works down in the surgery department. She expressed how she knew about Ella through a mutual friend and that she had been praying for Ella for months; Ella had been listed on the prayer chain at her church. She also reassured us that the staff assigned to the OR was amazing; she made sure that certain people were assigned to her surgery. How amazing is that…the world is so small and God literally orchestrates every detail.

After feeling blessed by her, we met the anesthesiologists and surgeons. They answered our questions and explained the procedures. We were told it would take 3-4 hours for her procedure.

As Josh alluded to in the prior post, it was fine until it was time to hand her over. Josh asked if they could stop for 10 seconds so that we could pray over Ella. During the prayer and once it was finished, we started crying hard as they carried Ella off to the OR.

About 30 minutes into the procedure, Dr. Abman and Dr. Lysinger (her pulmonologists) came out to the waiting room to discuss the bronchoscopy. They were very pleased with what they saw in her airway. They looked at the vocal cords – look totally normal. They looked at her trachea and her airway muscles. Those looked good too; they were not floppy as they originally presumed. They saw a tiny bit of inflammation at the top of her esophagus which looked like it was due to the retching and reflux issues, but nothing to be concerned about at this time. The most amazing finding: she has no scar tissue in her trachea from being intubated. Most babies that are intubated for 5 months would have some scar tissue. Everything looked great. Initially, they received consent to do a bronchscopy lavage procedure, if they noted mucous or some other findings that might be of concern. (A bronchscopy lavage is where the bronchoscope is inserted into the bronchi, or large airways in the lungs. Once the tube is in the lung, a small amount of fluid is sprayed into the lung. The fluid is then removed and sent to the laboratory for analysis. Respiratory tissues can then be observed and biopsied). Since everything checked out, they didn’t have to move forward with that procedure.

There was a glimmer in Dr. Abman’s eyes as he talked about the next steps. He expressed that we need to figure out “why” Ella is having these fluid issues with her lungs. I love it because this is a brilliant doctor who loves these types of challenges, you can just tell. He stated that we might need to do some other tests to solve the diuretic mystery. But he does want to take advantage of the fact that Ella is sedated today and was going to see if cardiology could perform an echocardiogram at the end of surgery. This would double-check her pulmonary hypertension and might provide some more insight if they have the ability to look at one of the chambers in her heart closer.

Grandpa came over to the hospital while Ella was in surgery and kept us company. We had lunch together in the surgery waiting area and just caught up on life. He was there with us while Dr. Partrick came out at the end of surgery to give his recap.

Ella did great throughout the surgical procedure. He went in the same incision. He admitted that her anatomy was a bit different than most diaphragmatic hernia babies, so I think it was great that him and Dr. Kays consulted. Her spleen was up high covering most of the gortex diaphragm patch, so not a lot of her gortex patch was visible. But you could see where the patch was sutured up against her esophagus. They were able to pull the nissen down and re-wrap it. Since her diaphragm tissue did not look that viable and knowing her history, they reinforced the diaphragm area near the hiatus with Alloderm. We’re hopeful that this will buy us more time and that as she grows, her tissue can regenerate over it.

When he looked around at her anatomy, everything looked normal. For example, he mentioned that sometimes the stomach can be smaller in these babies yet hers was a reasonable size. He was happy that the g-tube was able to remain in the same place. Finally, she was on a bit higher flow of oxygen coming out of the surgery (3 liters), but was able to be extubated without issue.

Considering everything, it could not have turned out better. We praise God for bringing Ella through her surgery successfully and for giving us so many friends, family and other Bun fans that are so willing to pray and support us. We know that is why Ella did so well today.

Tonight, Ella is resting comfortably in her crib. Because she needs IV access and is such a tough stick, they opted to leave her old IV in her left hand and added one to her right hand during surgery. So now she has 2 access points. The plan is to leave them both in as long as they are viable.

During surgery, they also placed a caudal epidural in her lower back. This helps to deliver pain meds and keep the mid-part of her body (where the surgery took place) in a numb state. As long as she has the caudal epidural, they need to have IV access.

Ella is a bit frustrated having both of her hands bandaged up. She tries to itch her nose, which she does frequently with the high flow on the cannulas, and can’t do it effectively. This makes her frustrated. She is comfortable and not feeling any pain right now, but as soon as they begin to wean the pain meds, we are expecting a fussy Bun.

Also, she has a foley catheter that will remain in place as long as the caudal epidural is in place. I guess that the epidural pain meds can also “numb” the bladder so that it does not sense when it is full and empty properly. Therefore, this will remain in place for a couple of days. Hey, we get a break from changing diapers….it’s all good.

Although it is still a challenge to work her binky and her frog pillow (her NICU souvenir), somehow she is still managing. As she went to bed tonight, she clearly wanted to escape the day too. Now, we’re hoping to join her.

Thanks again for all the love and support. It means so much during these times. And the verse that stood out for us at the beginning of the journey resonates tonight too:

Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Well, I mentioned that Ella did not like both of her hands tied up. By midnight, her nose was bright red. We also noted that the coverings on both arms weren’t the best, so the nurse helped us wrap them in something softer.

We all had a restless night. We advocated for Ella to be given Tylenol twice during the night. Although she was not in any pain, her hands being tied up and an itchy feeling on her face was making her uncomfortable and restless.

She is still battling congestion. Unlike pre-surgery, it does not seem to be in her nose at all. Now, it all seems to be in her airway. So when she coughs, you would think she has a horrid case of bronchitis. These symptoms are most likely due to the bronchoscopy procedure that was performed yesterday.

Throughout the night, she would roll from side to side trying to get comfortable. Here and there, she would belt out a rounds of coughs. Most of the time, we give her water by mouth to help wash down the thick secretions. But we were on strict orders to not give anything by mouth. That is tough to endure when you can’t make it better for her.

And since she was on the narcotics via the epidural, literally the nurse was in our room every hour having to perform vitals, administer meds, check her breathing, etc. Unfortunately, it was not a restful night for any of us.

About 3:30 am, the nurse was in the room fixing one of her pumps and Ella started to cough. Instead of coughing and clearing her throat, it almost seemed like she inhaled the secretions. So very quickly, Ella became frightened because her airway was completely occluded and she could not breathe. Josh and I both heard the commotion and leaped up to assist. The nurse tried to suction but was unsuccessful. She called for help and within seconds, there were about 6 people in our room helping with Ella.

It required blow-by oxygen and forcing the mask on her face, against her will, to bring her back. She turned purple blue and was trying to breathe but couldn’t. When her eyes start to dart around with fear, you know this is beyond her comfort level too. On top of that, she hates masks and when you make her use one, it works her up even more. But her saturation went down to the low 60s, so they did not have a choice. Several hands were holding her down in place and forcing the mask around her mouth. Finally, with further suctioning and saline, they were able to move the secretions enough so she could breathe on her own again through the nasal cannulas.

All this activity at 3:30am was a lot for the exhausted parents. It reminded us of the episode that we had in the NICU back in November, when Ella was much sicker, right before she was re-intubated. It was that same scary feeling, watching your daughter look at you with this frightened scared response, pleading for your help because she can’t breath. And yet, it is something you do not have control over in the moment. Your daughter’s life is in the hands of the trained medical professionals and you hope that they are taking all the right measures to ensure her safety and well-being. Once the storm calms, you remember that God is sovereign and always in control, even in the scariest of moments.

The surgery team rounded at 6:30am, poking and prodding at Ella. It was one of the first moments of solid sleep for her….figures. Once I took a peek at her, I felt so sad. She had rubbed her face so much and so hard with her wrapped arms, that her nose, cheeks and eyes were bright red.

When the pain medication team stopped by, they noted that along with Ella’s frustration of trying to adjust her cannulas without her hands, it could likely be an “itchy” response from her pain medications (a fairly common side effect). It made sense to us since it seems like she was rubbing her face constantly, definitely more than normal. So this morning, they started her on Nalbuphine, which is a medicine that should help relieve the itchy feeling.

The good news is that both IVs in each hand are still viable. The one on her left hand has been there since last Saturday, which is rare for Ella. So of course, the time when we would want an IV to go bad because it would mean more comfort for Ella, it is holding on strong! They want to keep both IV access points over the next few days or as long as they will last. I’m really hoping that the itchy sensation goes away so she can get comfortable and get some much needed sleep.

When they examined her this morning, they are a bit concerned with her epidural site. It is oozing and there is a red area about 2 centimeters in diameter. They cleaned the site and re-bandaged, but are going to monitor closely. If it looks the same or worse this afternoon, they might remove it. The caudal epidural is the superior choice for pain management but they also do not want to risk any infection.

The surgery team gave the consent to start feedings today. The plan is to start with clear liquids, like Pedialite and slowly change back over to Alimentum. They anticipate that it will take 36 hours to have her back on full feeds of Alimentum.

She is on 2 liters and seems to be saturating well with a lower heart rate. I think the pain meds are keeping her nice and relaxed; hoping that epidural can lat a bit longer.

We had a chest xray this morning, so they can compare to pre-surgery. Hopefully, we can take a peek later. Her urine output seems good, but they will be drawing labs today too. We’re hoping that one of the IVs can be used, so she doesn’t require another poke. Finally, we expect to hear results from Ella’s echocardiogram from yesterday and whether or not we need to give any consideration to any different medications based on those results.

Please continue to pray for Ella’s comfort. Everything went really great for her surgery and bronchoscopy. We’re just having a bit of a challenge maintaining her comfort level post-surgery and that might become more challenging if they have to remove the epidural. And of course, it breaks my heart to see her itching her face constantly, making the red spots even worse.

Ella’s morning was eventful with the figuring out the itchy response to the narcotics plus checking out her caudal epidural site.

The good news is that the caudal epidural site swelling went down as the day progressed. There is still some redness that they wish was not present, but cleaning the dressings and changing everything along with reducing the flow to 3.5ml per hour seemed to do the trick. So for now, they have opted to leave the caudal epidural in her lower back.

The second dose of Nalbuphine, to help with the itchy reaction to the narcotics, did not come soon enough. They can dose her with the med every 3 hours. The nurse let it go too long and Ella became really fussy.

At first, I thought that was the answer. Just give her the next dose of Nalbuphine. Once she received the second dose via IV, she was still having a tough afternoon. She was behaving like she does when she doesn’t feel well and is fluid overloaded.

I expressed to the nurse that something wasn’t right with her. I did not sense that she was in any pain, however, I do think that she is experiencing some type of discomfort. As I watched her, she wasn’t trying to scratch her face so that idea was eliminated. Still coughing and with more congestion in her nose, I could just tell that she was feeling crummy.

I asked about her labs. What did those look like from this morning? Her BUN was down to 16. Yep, fluid overload from surgery. Can you imagine the distress she would be having if we had not dried her out ahead of time? Also, we missed giving her the 9am dose of Bumex this morning. Because Bumex is given via g-tube into her belly and they had not yet introduced fluids into her system yet, they wanted to wait and give the 9am meds slowly throughout the day.

Once I asked about the labs, they also shared that her electrolytes, specifically her potassium and sodium were out of whack. After back and forth discussion, we resolved to skip the Bumex dose from this morning. Instead, we opted to get back on schedule for this evening with her diuretics and draw labs tomorrow.

Speaking of drawing labs, it was the hope that we might be able to draw labs from one of her IV lines, specifically the larger one that the surgical team inserted yesterday. No such luck, so the Bun had to get poked for her labs today and will need to on a daily basis. Sigh…

Back to a fluid overloaded Bun…she also had a chest xray this morning. I asked how that looked. They informed me that the upper left lobe of her right lung is collapsed (atelectasis). It could be a mucus plug or possibly even from inserting the bronchoscope or breathing tube too far from intubation. They think it is fairly minor and will clear up on its own within the next few days. We can do some chest therapy to help open up the lobe, but they are not sure she will tolerate it since she just had surgery.

The echocardiogram from yesterday shows some diastolic blood pressure issues in Ella’s heart (her blood vessels are not dilating as they should). This causes the heart to work harder to pump blood. Interestingly enough, this might relate to the reason she is so sensitive to fluid overload. Although all medical opinions are still being gathered, there is a chance that Ella might have to take Captopril, an ACE inhibitor. The expected benefit would be lower blood pressure resulting in an overall decreased need in her diuretics dosage.

For the next few days, the plan is simply to stabilize her from surgery. We are going to continue with the Bumex and IV Lasix to dry her out. At the same time, they will slowly wean her off the pain medications and remove the foley catheter once they take out the epidural. Finally, they are working up to full feeds via the g-tube. This morning, she started at 8ml/hour of pedialite (clear liquid) through her g-tube. They have worked up to 35ml/hour of IV drip and Pedialite and will see how she tolerates this volume overnight (her baseline volume). If everything is okay, they will work on her food strength tomorrow.

By the end of the weekend, we hope that she is in a better place and recovered from her surgery. And starting next week, the pulmonology team can begin trying to solve the diuretic mystery. If they come up with a perfect mix of oral medications for Ella and get it right the first time, it is likely that we would go home towards the end of next week. If they have any massaging to do, we might be here even longer. Once again, do they offer time shares?

Thank you for experiencing the highs and the lows on this journey with Ella Renae. I’m hoping she will be back to her silly self in a few days so you can feel her smile radiate off your screen and brighten your day.

Please pray for improved sleep and recovery for Ella. Also, that her parents would be able to get their much needed rest that has been lacking! Finally, that we will receive wisdom and guidance on the next best steps for Ella’s health and well as our lives in general.

Deuteronomy 4:29-31
(The Message: The Bible in Contemporary Language)
But even there, if you seek God, your God, you’ll be able to find him if you’re serious, looking for him with your whole heart and soul. When troubles come and all these awful things happen to you, in future days you will come back to God, your God, and listen obediently to what he says. God, your God, is above all a compassionate God. In the end he will not abandon you, he won’t bring you to ruin, he won’t forget the covenant with your ancestors which he swore to them.