Today was a good day for Ella.

Josh stayed with her last night and she slept well. He feels like she is doing better. At times, she was difficult to console today. The only thing that seemed to work was cuddling her.

Kelly offered to watch Ella solo in the hospital setting today. It gave her the chance to take care of Ella on her own, but with the comfort of being able to hit a button if she needed help. This was a good transition for us.

Josh and I used the time to move some items to the other house, in preparation for this upcoming weekend. It was good to get a head start on the BIG process that is ahead of us. Once we were done, we went and grabbed some Chinese food at a favorite local restaurant. It was so nice to just be by ourselves, alone without the Bun.

We’re so thankful for Kelly.

Tomorrow will be a big day as far as figuring out the plan for Ella. We’re anxious to see what He has in store.

Colossians 2:6-7 (New Living Translation)
And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.

Ella had a good night – she only woke up twice. Both times were in the early morning, starting at 5am. That is a huge improvement over the past several weeks and closer to her baseline sleeping behavior.

From there, she was smiley all day. We had a great time – reading books, playing, cuddling. You can just tell that she feels really good. This is the Bun that we know and love. I’ve missed seeing her this way. She has felt crummy for so long, even before we ever arrived at the hospital doors.

Today, we decided to complete the cortisol test. This is the test that they attempted at 4am on Saturday morning, but they were not able to complete it because they were not successful at getting an IV. Her BUN was 34 which explains why her veins were not accessible.

We knew her favorite resource nurse was going to be working again tonight. Except this time, instead of waking up at 4am, we decided to do a late night test. Ella began fasting at 3pm and around 9:45pm, we started to try and get an IV again. The nurse tried one area and was unsuccessful, so opted for her right foot. At 10pm, the IV was placed successfully and the medicine was pushed slowly. In exactly 30 minutes and 60 minutes after the medicine is administered, you have to draw labs.

At the 30 minute mark, the nurse tried to draw labs in her arm – it was not successful. So, she asked if they could do a heel prick. For those that have been following for a long time, we are not in favor of heel pricks. Not only do they prolong the torture, but most of the time, the blood clots and they can’t measure the numbers they want to see. Then, you feel like you have tortured for no good reason. But in this case, the nurse had researched a bit and even if the blood did hemolyze a little bit, it would not affect this particular test.

Because the sticks needed to be at exact times, and the nurse was having a hard time sticking her, I conceded to the heel stick. Fortunately, her heel responded nicely. So, we did one heel stick at 10:30pm followed by another at 11pm. In between each stick, Ella would doze off. She would get so tired from screaming so loud. It was a rotten feeling to wake her up each time and let her know that she would be getting stuck…again.

I hope that she passes the cortisol test. The medicine that they administered via the IV sends a signal to the brain to produce cortisol. When they draw the labs, they are measuring the cortisol level to make sure it is within the normal range and that her adrenal glands are responding appropriately. If it is not, it means adding a daily dose of cortisol, just enough to make up what her body is not producing on its own.

The other change for this evening is going up on the food formula. We are going to try 27 k/cal formula. We are hopeful that it will go well, although Ella has never tolerated anything above 26 k/cal. We’re hoping that because this food is already pre-digested, it will work better. Tonight will be telling as far as her toleration. I’m hoping that I will not hear a peep!

Although there are still a few things to iron out, we are hoping for discharge late this week or early next week. In some ways, it would be great if it was next Monday because then Ella would not be in the way of the move on Saturday. I am nervous about trying to juggle her around the house with things in disarray.

Speaking of disarray, there are a handful of volunteers (including one of my dearest friends who will be coming all the way from Texas) who will be showing up to help support us in the move. Boxes, tape, and lots of time invested to help us get packed. The movers show up on Saturday morning and there is still a lot left to do. Praise God for those extra friends that were willing to sacrifice and serve by helping us move.

I can’t stress enough how great it was to see Ella feeling like herself again. It just makes everything worth it to see that smile or have her listen to my heart beat when I snuggle with her.

We praise Him for where He has brought us…for how far He has brought us…for giving us doctors with knowledge and smarts to figure out a regimen that will work for Ella.

Thank you Lord for Ella Renae.

Galatians 6:9 (NIV)
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Ella did great last night. She only started to wake up in the early morning hours. The overnight nurse helped vent her a couple of time throughout the night and then she did not wake up until the morning. That is the last time I can remember her sleeping real solid throughout the night.

The Bun’s cortisol test came back with flying colors. Praise God that her adrenal glands are working and that she will not need to take cortisol supplements. When they initially placed the IV and drew the blood, her level was 16. Thirty minutes later it was 34 and thirty minutes after that it was 31.

Interestingly enough, Ella’s basic metabolic panel came through from last night. Her BUN is still 34. This is the same level when it was tested early Saturday morning. This is amazing that her BUN stayed the same yet they did decrease the dosage of Aldactazide. This means that the Aldactazide is working well for her.

Also, I brought up the food and how that might play a part. Dr. Kays was always keen that food played a big part in her overall fluid status. And not just the volume of food that she took, but the actual type of food. Last night after the cortisol test, Ella started taking 27 k/cal formula. She seemed to tolerate it fine. When they discussed during rounds this morning, they felt that since she is still dry, she could probably handle a little bit more volume. So, they have her at a rate of 31ccs/hour (used to be 30ccs/hour). If all goes well, we might try increasing the caloric content of the food in the morning.

Clinically, she looks fantastic. Aside from her BUN still being too high, she looks and feels amazing. You can just tell. That is so good to see.

Since we are getting close to our final cocktail for Ella, they have ordered more blood labs in the morning. They want to check them again to see if giving her the extra volume did anything to her labs.

My dear friend Terri arrived from Dallas today. She volunteered several weeks back to fly out and help coordinate our move. Aren’t great friends an amazing blessing? Literally, I have no idea how all this would have worked without the help of her and other volunteers that have stepped up.

Today was great. Since Ella was on a good path, I had Kelly come to the hospital to take care of her. This left me the flexibility to go to my house where volunteers showed up to help pack. Plus, it gave me lots of time with my friends throughout the day. It was a nice break for me and it gave our nanny more time to get to know Ella in the controlled environment of the hospital.

We made great progress on the packing and even had some friends offer to load up their cars and take a drive to our house to unload belongings. We made a huge dent in the packing and feel confident that the move will take place without too much chaos!

The next few days will be key for Ella stabilizing out so we can take her home. Please pray for us to get our rest, and for everything to fall into place for the move. The weather report is stating rain all day on Saturday. Please help us pray for no rain! It will make the move even that much more challenging if we have imminent weather upon us.

Psalm 69:16
Answer my prayers, O Lord,
for your unfailing love is wonderful.
Take care of me,
for your mercy is so plentiful.

Ella continued to do well last night and today. Earlier in the morning, her labs were drawn. The only change was an additional 24ccs of food (she ran at ran at a rate of 31ccs per hour or 744ccs total for the day). Her BUN was 33, effectively the same as Monday. That’s okay – it is better to go slow with the changes and monitor the Bun closely. We’ll see what the plan is tomorrow for change with food – volume or calories.

There is so much more to write but we need to take a pass tonight – – we’re just too tired to type it all out.

We thank Him for Ella Renae, for His divine power, for everything that He has given us.

Ella had a great night and day.

During rounds this morning, they increased her rate of food to 32ccs per hour, for a total of 768ccs in a 24 hour period. Last night, they increased her food density to 28 kcal/hour.

Since Ella has been stable, Kelly stayed with her at the hospital.

We’re hoping for discharge from the hospital on Monday. In the meantime, we are mostly monitoring her stats and adjusting food volume.

Thank you so much for the support. Please continue to pray for Ella’s stable track and for every detail of our move to come together.

Today was a good day for Ella.

We are sticking with 28 k/cal formula and kept it at a continuous rate of 32ccs per hour. Starting tomorrow at 6am, they will stop the food and give her a break. From there, we will feed every three hours, starting at 9am. We will still use the food pump and work with the rate, with the goal of moving towards bolus feeds.

We are still targeting hospital discharge for Monday, assuming Ella can stay on track. Clinically, she looks great. They have labs scheduled for Sunday morning. It will be interesting to see if she remains dry. So far, her BUN has remained the same this entire week (33-34).

We had so much help this week to prepare for the move. My dear friend Terri came all the way from Dallas to work her tail off. She also helped to arrange all the volunteers that helped out through the prior days. And let me tell you — there is no way this move would have happened without everyone’s help. A special thank you to all those friends that helped and supported us this week.

Also, a huge thank you to Kelly. She stayed at the hospital with Ella the past few days while I went to the house and packed with all the volunteers. This allowed me to help answer questions and move the process along faster. Moreover, I was able to see my friends. Heck, we did not get a picture, but Terri even found a way to treat me to a spa pedicure and high tea at the Brown Palace. So even though we were working hard and packing, we still found lots of girl time. It made me feel great to get out of the hospital and feel like a normal person. That would not have happened without Kelly.

I felt overwhelmed yesterday when I sat back and thought about all the love and support we have received this week. We’re just very thankful and still in awe of how God works in our lives.

The move is scheduled to start at 8:45am tomorrow morning. It is supposed to be raining and cold. Somehow we’re hoping that the weather report is wrong….very, very wrong.

Please pray that Ella’s health will remain strong for a Monday discharge. Also, that the move tomorrow will go smoothly.

Psalm 62:5-8
Let all that I am wait quietly before God,
for my hope is in him.
He alone is my rock and my salvation,
my fortress where I will not be shaken.
My victory and honor come from God alone.
He is my refuge, a rock where no enemy can reach me.
O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.

but Ella is doing good =). Super Nanny Kelly was kind enough to take on watching Ella all day, and tonight in fact, so that Tina and I could finish up our move. It was a cold wet day in Denver, and we’re absolutely exhausted. I’m writing this at 1:30am local time, and Tina is asleep on the floor next to me.

The move is pretty much done except for some cleanup at the other house. We have a lot of unpacking and such to do at the “new” place though. I can’t believe how much we’ve been able to do in such a short amount of time, and really, credit is due to all the people who pitched in to help!

We’re still hoping that Ella will be discharged on Monday. If we’ve learned anything with Ella though, nothing is for sure.

Ella is working up to bolus feeds and continues to do well in this area. Hopefully the blood work we do in the coming days will just confirm what we’re seeing clinically…a happy, comfortable kid.

Going to wrap this up so we can get some sleep.

Enjoy the pictures of our sweet little Bun!

Yes, the moving trucks are gone and it is officially over…the move. I mean, the house is a disaster and there is a lot of work ahead of us, but it’s over. I can’t believe that we are back in our house.

Kelly spent so much time with Ella this weekend at the hospital. It was a tremendous help to us as we moved our household. She even spent last night at the hospital. That was a wise move considering that we did not finish with the move and retire until 2:15am.

Back to the most important topic, Ella. She looks good clinically and is behaving like she feels well. With 7 weeks of hospitalization under her belt, it is good to see her feeling better. I just hope and pray that this will be the beginning of a season of health prosperity. It would be really nice to have a long break before returning to the hospital for any in-patient stays.

Today, Ella was fed her during her normal feeding times but given 100ccs over an hour via the food pump. She seemed to tolerate that well, so we are going to look at increasing the rate of food over an hour tomorrow. Heck, if she looks good and seems to be feeling well, I might have to try bolus feeding her just to see what happens.

Ella is scheduled for labs in the morning. We’re praying for a good nurse and stable labs. Although she has been running dry, I would like to see if her BUN is different or essentially the same as it has been this past week.

We thank Him for our beautiful baby girl.

Habakkuk 3:2
I have heard all about you, Lord.
I am filled with awe by your amazing works.
In this time of our deep need,
help us again as you did in years gone by.
And in your anger, remember your mercy.

Last night was rough for Ella. She was restless and up several times due to food discomfort. They changed the nightly food rate to 34ml/hour. Although it was only a 2ml increase per hour, it was too much for Ella.

The morning started out with labs. It is almost hard to believe, but her BUN came back at 37! That is the wrong direction and the most dry she has ever been. This portion of her labs caused a lot of discussion this morning as to whether or not she should be discharged. The expectation was that she would have gotten more wet with the increase in the volume of food over the past few days. Instead, she became even more dry. It made the docs question whether or not the “cocktail” was correct.

To be honest, I think they realize that the “cocktail” is not correct. Everyone agrees that a BUN of 37 is too high (normal range is 6-17). But although her numbers show that she is too dry, they all agree that she looks and behaves great. She is definitely more comfortable when she is running dry. It just becomes a question of whether or not she is too dry.

I feel like this process of refining her “cocktail” is a long term plan for management. Even if it was perfect this week, it does not ensure that it will be right in a week from now. We will always be adjusting her meds and food as each week passes. This process is long term.

As a compromise, we went to the pulmonary clinic and used their scale in B1 to weigh Ella. As we approached the pulmonary clinic, Ella saw her friend Megan (she works at the hospital and helped us move last week). Megan took us right back and gave us VIP treatment. Ella weighed in at 7.9 kilos.

Next Monday, we have to go to the Children’s Hospital to get labs done again. Along with that, we were asked to visit the pulmonary clinic scale again to see if Ella is showing any signs of weight gain. By agreeing to these 2 steps, they decided to let us come home with Ella this afternoon 🙂

Even on the way down to the pulmonary clinic for the weight, Ella got a huge smile on her face. She was simply excited to be out of her hospital room.

On the way home from the hospital, we had a scare. The staff did not let us know that 3 of Ella’s medicines are compounds (these are new meds for us) . Compound medicines can only be made at certain pharmacies and typically take more time. When we tried to work with 3 different Walgreens, we kept running into challenges. For example, they will not even fax prescriptions from one Walgreens store to another Walgreens store. Finally, we worked it out with a local, family-owned pharmacy at the last minute. They were nice enough to take a verbal order and asked that we fax it. Since I was in my car and did not easily have access to a fax machine, Josh suggested that I take photos of the prescription and email them. It totally worked.

My beautiful wife has fallen asleep while writing this post. I’ll try and pick it up from here.

The pharmacy was able to get all three compounds mixed and ready within an hour and a half! Their service was absolutely phenomenal.

With this problem solved, Tina was able to come home and get a temporary place set up for Ella. The house is still in disarray, and the Bun’s room still smells of paint, so we’ve set her up in the living room for now.

There remains a ton of unpacking and organizing to do before we’ll truly feel moved in, but it’s nice to be home with our sweet girl.

Praise God for the work He does in our lives every day. Ella Renae is quite the miracle, and her spirit and strength remind us of just how awesome our Lord is.

Thank you Jesus for allowing us to take our girl home again. We pray that you continue to heal her body, and ask that you give us wisdom and discernment in balancing out her medications. You Lord are worthy of our trust. We surrender our beautiful girl back to you so that you may be glorified. We love you Father. Amen.

We’re home but it has been tough.

Ella doesn’t feel great. You can just tell. It makes it seem like we should not have left the hospital. We were just was tired of being in the hospital setting and pushed to come home.

Last night, she seemed uncomfortable. We decided to skip her nightly dose of diuretic since a) she has been too dry and b) she missed a bunch of food during the day. This morning, she was still not acting like herself. We called the docs, explained what we did last night and how she was behaving. Without hesitation, they opted to not give her the morning dose of diuretic (Aldactazide). They asked us to monitor her closely and to resume our regular schedule of medicines tonight.

She’s just not acting like herself. We miss our girl so much – – the one that feels good and is playful with lots of smiles. We had a small taste of that last week for a few days. But our theory is that she became too dry and is now uncomfortable. For example, today we could get her to smile but it took lots of coaxing just to get anything.

Now, the docs want us to go to the Children’s Hospital and get labs on Thursday, plus get on the scale. I was hoping that would be a 1x/week situation, but Ella is just too fragile.

Please pray for strength for Ella’s body. Our hearts desire for Ella to be feeling good and more like herself.