You wouldn’t know it from the picture above, but poor Ella…she had another rough day.

We had a horrific blood draw this morning. It was not someone that was especially noted for giving “good sticks” and it lasted way too long, 15 minutes. That may not sound like a long time, but when Ella is fighting hard, clamping down and holding her breath while turning blue, 15 minutes feels like an eternity. We get blood draws every day, so I’ve seen those that really do a good job and those that might do well on 90% of other kids, but seriously, this is Ella. She’s tough.

Feeding did not go well. The morning feed was scheduled to take 1.5 hours, but took nearly 3 hours. She has increased discomfort along with retching. We skipped the 12 noon feed and then came up with a different strategy. We’ve talked to Dr. Perry about switching her formula to a more age-appropriate formula called Peptimen Jr. Our original plan was to slowly integrate over from the Alimentum very slowly over several weeks. Well, since Peptimen Jr. is more dense and has more calories, why not make the switch now? We are in a controlled environment and she is going to have a problem working up to full feeds either way, so why not make the food switch and maybe be able to decrease the volume of food?

We tried one feed of 60ccs over 1.5 hours and it seemed to go okay. She was not any better than the Alimentum, but also not worse. So starting tonight at 8pm, they are trying to make up some of the calories lost today and have her on a continuous feed of 40ccs for 10 hours. So far, so good. The real test will be tonight while we attempt to sleep.

If we have learned anything from Ella, she wants us to remember to go slow with change. We went through this process in Gainesville too with feeding issues. The good part: it can resolve. It just takes time. Taking a deep breath…

They increased the dosage of the Captopril today; they are still playing around with the dosages for the optimal effect. Along with the Captopril, the docs mentioned that they anticipate lowering her dosages of diuretics over the next few days. We’re excited about that…

Respiratory-wise, Ella looked fantastic. Aside from her tummy issues, which seemed to come in waves on/off, she seemed happy and was looking good. She has been stable on 1 liter for 24+ hours now.

After applying pure aloe vera gel to her face several times per day over the last few days, her nose is no longer scabbed. Yeah! For the most part, she is back to her smiley self, unless its feeding time!

Please pray that Ella will tolerate the Peptamin Jr. tonight and that she would continue to tolerate more and more feeds as the days and hours continue. Also, that her lungs and heart will work in better harmony, effectively reducing the need for diuretics and oxygen.

Deuteronomy 10:21
He alone is your God, the only one who is worthy of your praise, the one who has done these mighty miracles that you have seen with your own eyes.

Well, I’m glad that our pics don’t look too bad, but the sleep hasn’t been that great. Last night, Ella was up more than a few times. Once again, seemed to be having troubles with food intake. It started to make us wonder if it was truly a volume issue or if there is something else bothering her tummy.

The morning feeds were just as dramatic. Ella clearly was telling us that her tummy was hurting. Her heart rate was up between 185-195. Around 11am, she also had a slight fever.

This lasted until early afternoon when a dose of Maalox seemed to calm her tummy and give it some relief. Within 10-15 minutes of dosing it through the g-tube, she was clearly more comfortable. The tummy issues came up not only with feeding but sometimes when she was just laying in her crib.

We did see some fresh blood come up once through the g-tube. We know that the steroids she’s been taking can cause some irritation to the stomach lining. Also, her tummy might be tighter and more sensitive for a bit due to the surgery. At this point, we are not really sure what is causing it, but now have a plan on how to make her more comfortable.

When rounds were completed this morning, Ella showed weight loss from yesterday. Her overall urine output was down. Her BUN came back and it was 10…hmm. They realize that may mean more fluid on board, but feel that the Captopril is beginning to show its impact in that she can tolerate more fluid in her system without it causing her respiratory distress. When Ella had a BUN of 10 before the Captopril, she was in a very bad place. Yet today, she seemed good respiratory-wise except for the tummy troubles.

Along with her tummy troubles, she had a bit more retching and coughing this morning. The retching is different now and almost seemed like pure nausea. It is definitely not the hard core retching that she was doing prior to surgery. Praise God that is better now!

Another medicine added today: Prevacid. Although it will take 3 days to really see the impact, this medicine is intended to assist with Ella’s stomach lining. It should help minimize any belly pain she is experiencing when eating.

They added a thiazide diuretic and a potassium sparing diuretic today. With her current dose of Bumex plus the other two, it will work her kidneys evenly and is better for long term management.

Her blood pressures have been higher than normal. With the Captopril, you would expect them to be lower. So they are thinking that these symptoms are signs of her pain in her belly. But they expect to have to increase her Captopril dosage over the coming days to optimize the impact.

Another great surprise. Josh was telecommuting today and I was thirsty so I asked him to watch Ella for a few minutes while I went downstairs. My timing was great. I walked back into a smelly room. Apparently, Ella had a blowout of diarrhea. Josh had to ask the nurse to help him with clean up. It was everywhere and lots of it! Diarrhea is listed as a side effect of the Captopril, but time will tell.

Throughout the day, we were able to get a few other meds that helped. We started using Mylicon for the gas. As we have experienced before, it doesn’t eliminate or reduce the gas for Ella that much. But during one feed, it did seem to bind the gas bubbles together more, making the venting process easier. It was certainly better than venting 3 separate times for 35 minutes after a feed. Later tonight we tried it again, and it didn’t seem to have much impact. The jury is still out on this one.

So, I just have to share all the meds that Ella took at various dosages today: Captopril, Diamox, Sildenafil, Bumex, Tylenol, Maalox, Mylicon, Prevacid, Hydrothiazide/Spironolactone combo, Multi-vitamin, Reglan, and a Potassium-Chloride Supplement. Wow, so many things…

The rest of the process is really fine tuning and more of an art than science. They will spend the next few days dialing in the Captopril to the correct dosage that is the most effective for Ella. We still have to figure out the feeding/tummy issues, making sure she stools properly, and the art of the diuretics for her long term management.

Now that it has been 36 hours on the Captopril, we are convinced that it is having a positive effect. She doesn’t seem compromised from a respiratory standpoint. And normally going this long without massive amounts of diuretics plus a BUN of 10 would be really, really bad. Also, we decreased her oxygen at 6:30pm to 1 liter and she has been saturating great.

We don’t want to get too excited but feel like they may have figured out “why” Ella is so fluid sensitive. Who would think that it is because her left ventricle in her heart is more narrow and works harder? And that giving her a blood pressure medication would help solve Ella’s fluid issue?

We’re so glad that pulmonary hypertension is such a specialty in the Denver area; we’re so thankful to be surrounded by experts. It was not the place to be for a CDH diagnosis and saving her life, but it is definitely the right place for Ella’s long term care.

At this point, we realize that it may still be several days for all of this to pan out. The earliest timeframe on returning home would be this weekend or early next week, if everything continues to go well.

Thanks for all the support and prayers. You are seeing the evidence in Ella’s smile. Please continue to pray for the doctors wisdom in coming up with the “art” of Ella’s medications to make her feel the best and have the greatest long term impact. Also, pray that Ella continues to get stronger – that we can resolve her tummy issues and that her oxygen requirement will get lower and lower, towards her baseline.

We praise Him for giving the gift of life to Ella. This is such a tough journey, but she is so worth it. She is such a blessing to us and to so many of you. She reminds us each day of our Heavenly Father and brings His truth to our hearts in such a real way.

Isaiah 46:4
I will be your God throughout your lifetime—
until your hair is white with age.
I made you, and I will care for you.
I will carry you along and save you.

Ella looked good today. I think it is because she is nice and dry.

This morning, her urine output did not look quite as good as the day before. Also, her weight was up from yesterday. And even though she was clinically acting fine, we opted to add an IV lasix dose at 7am, first thing in the morning, just to be sure.

We were able to talk the docs out of getting labs today to give Ella a break. Having the labs was not going to change the plan for the day, so they granted us a pass.

During rounds this morning, they discussed giving Ella a blood pressure medicine called Captopril. The expected benefit would be lower blood pressure resulting in an overall decreased need in her diuretics dosage. The first dose of Captopril came at 4pm today. She will get it three times per day.

For her diuretics, the plan was to dose Bumex 1.5 mg twice per day and IV lasix three times per day until the IV went bad. Well, 10am was her last dose of IV lasix; the IV went bad when they tried to use it at 6pm. I still can’t believe that the IV lasted 9 days.

When they took off the dressing, it was apparent that the IV had gone south a lot earlier in the day. The cloth diaper that was wrapped around her arm was wet and her hand/forearm was red and puffy. The IV pump had been running at a slow flow of saline all day, pushing fluid into her hand and forearm all day. Poor little Bun!

Our biggest challenge of the day was feeding. They were trying to work Ella up to 100ccs of food via bolus feeds (only takes 5-10 minutes). For today, they wanted us to try delivering 100ccs over 30 minutes. Unfortunately, right around 70ccs, she became irritable and seemed to be in pain. Also, she seems to be having a lot of gas. Not sure why, but as an example, I had to vent for 35 minutes after one of her feeds today while patting her back, just to get all the air out. You could tell that she was in pain too. So hard to feed your baby and feel like you are hurting her.

We think that Ella’s tummy needs time to stretch out again after her surgery since they re-did her nissen. So, we are going to go much slower on the feeds during the day. We found that delivering 100ccs over an hour and a half seemed to be tolerable. I’m hoping that we can improve that rate in the coming days as we near discharge from the hospital. Trust me, it is not fun to be connected to a food pump all day at home is not fun! We had to do that months ago when we were first out of the NICU. I don’t miss it!

One piece of good news: they weaned Ella down to 1.5 liters of oxygen around 10am. And so far, she has tolerated it beautifully. We’re hoping that this trend continues. I think it was good to show that she could tolerate a reduction in her oxygen when she is dry. If she requires more oxygen later in the week as they are testing out the right mix of meds for her, it will demonstrate that she might be getting “wet” again.

Tomorrow, they talked about adding a thiazide diuretic to help balance out the bumex (loop diuretic). Plus, they are going to adjust the Captopril (today we started at a low dosage and they expect to increase it to the amount she will tolerate). The hope is to use her Bumex, Captopril and an additional thiazide diuretic in just the right amounts to help prevent her fluid issue.

The coming hours and days will speak for themselves. Either Ella will be able to maintain her dry status and continue to improve clinically or she will start to get “wet” again. We’re so hoping that the Captopril is the magic answer. It would be so nice to finally know why Ella is so fluid sensitive and have something that can help us reduce her diuretic intake.

As we end our 16th day at the hospital, we praise Him for a successful surgery and the healing that is taking place in Ella’s little body, albeit slow. Sometimes it is so easy to be so immersed in the details (like a crying baby simply trying to eat via a g-tube with tummy troubles and venting for 35 minutes) that you forget how far he has brought her and how He continues to work in her life. And then someone new will walk in our room, and ask us something like, “so when did you move from Florida? Do you like Colorado?” and it opens a door to share Ella’s journey. And then it not only blesses them, but it blesses us to share.

We’re waiting for His will to be revealed in our lives, especially for some of the big decisions that lie before us. Sometimes it is so hard to be patient. But we know that God’s timing is perfect and rest in the truth of His goodness and love.

Psalm 143:10
Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.

Ella is definitely feeling better today. Her saturation and heart rate were in check and she was smiling a lot.

This morning, she looked a lot better but I could still sense that she is holding onto more fluid. During rounds, they discussed leaving the IV Lasix the same (3 doses per day). I pushed that they give her more IV lasix while we still have an IV. So they ended up giving her two extra doses of Lasix. We’re hoping that will make her dry by tomorrow. Also, the IV in her right hand that they placed during surgery was not viable by this afternoon. I cannot believe we still have the IV in her left hand – – it has been there for over a week!

We’ve worked up to her 800ccs of food each day from a volume standpoint. We are going to take the next several days to incorporate bolus feeds again. For now, we are spreading it out over a longer period of time with the food pump.

She has been weaned off pain meds and is just taking Tylenol every 4 hours. We will likely move to dosing it on an as-needed basis soon.

Thanks for all the thoughts and prayers. Continue to pray that Ella will dry out overnight. We want her to be in a good place for rounds tomorrow morning, so they can discuss a strategy for her diuretic mystery.

Nahum 1:7
The Lord is good,
a strong refuge when trouble comes.
He is close to those who trust in him.

Ella’s doing better than she was yesterday, but is still far from being as dry as she should be. Her labs indicated a BUN of 14 which may be a bit artificially low due to her lack of feeds over the last couple days, but it’s still a ways from her dry target of 25.

Clinically she’s behaving better, even throwing out some smiles, but her respiratory and heart rate have been more elevated today.

Her IV Lasix was being administered every 3 hours yesterday to help get her dry, but as of 2am this morning, they switched back to every 6 hours. After rounds, we all agreed to switch her back to a Q3 schedule for IV Lasix until she’s completed her journey into feel-good-land. This way, she’ll be in a better place next week to test some other medications that will allow her to hopefully reduce her overall diuretic intake.

We’re excited for next week because we’ll be going after the potential cause of Ella’s fluid issue instead of just treating the symptoms. Please pray for wisdom in finding the right mix of medications.

A bit of good news: Ella was able to transition over to PO pain medications without issue so the pain specialist pulled her caudal epidural at 6am this morning. The removal was pretty rough for Ella, not because of the epidural catheter, but because of all the tape holding it down. Nothing like waking up to someone yanking a bunch of tape off your back (OUCH!). Fortunately, I was able to pick her up and console her pretty quick.

I’m hanging out with the Bun today while Tina runs some errands and shows the house to some prospective renters. We’re trying to be open to what God wants us to do from a rental perspective, so please pray for discernment.

Thanks for keeping up with our precious miracle, and for praying us through this rough time. Praising God for the work He is doing in and through Ella Renae.

Please pray for Ella. She is increasingly having a hard time breathing.

We had another episode overnight and they opted to give her an unscheduled dose of IV Lasix. Keep in mind that this was not really an incremental dose in diuretics since they did not give her one of her doses of Bumex yesterday.

We had labs this morning. Her BUN is 12 – – her lungs are wet. You can tell by her behavior and how much she is struggling to breathe. Right now, she is on 2.5 liters and her heart rate is fluctuating between 160-185, definitely on the high side.

Her nose is now officially raw and bleeding on the tip. Her cheeks and lips are close to skin breakdown.

Poor little Ella is just feeling rotten. Please keep her in your prayers today.

UPDATE: 8:00pm MST:
Thank you for all the thoughts and prayers. I am happy to report that Ella is doing much better this evening.

When the doctors came by to do rounds this morning, we explained how Ella’s clinical signs had worsened and now we had the labs to back it up. We advocated for Ella and expressed the importance of giving her extra doses of IV Lasix today. If we continued to let Ella go down this slippery slope and let her lungs become even more wet, we could find ourselves in a really bad place.

Fortunately, they looked up the chest xray after rounds and the images confirmed pulmonary edema. (Side note: even though she has been admitted to the hospital twice recently for this diagnosis, her chest xrays never showed pulmonary edema. The fact that they did this morning just indicates how wet her lungs have become). Also, when they did their assessment this morning, her lungs did not sound clear. She sounded like she was wheezing. Her chest xray has worsened just from the one yesterday morning. We certainly were not celebrating in Ella’s condition, but it was a great way for us to prove to them that we know our baby girl.

All in all, the staff here is fabulous. And the best part, they not only are realizing that we are very tuned into Ella, but we are giving them just enough latitude so that they can practice medicine and see that everything we are predicting about her care is coming to pass. We’re hoping this makes for smoother hospital visits in the future (we have completely accepted the fact that this is not the last time).

It is also nice to know that we are building relationships at the hospital. We have had 3 nurses sign up to be part of her primary care team. They have fallen in love with her and can tolerate us…and they WANT to take care of Ella. That is a great feeling.

As all three of us are breathing a bit easier this evening, we are once again praising our Father in Heaven.

Deuteronomy 32:4
He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.

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.

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.

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.

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.