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!

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.

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.

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 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 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.

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.

I spent last night with the Bun and I’ll be spending tonight in the hospital as well so Tina can try and catch up on some sleep. I don’t know how Tina does this 5 days a week. What an amazing wife I have…no doubt!

Overall, Ella has made some pretty big strides since we’ve been here. A doctor who hadn’t seen her in a few weeks confirmed this for us. I think seeing her every day can sometimes skew our perspective, so having an attending doc affirm her progress is encouraging.

Ella continues to tolerate her food, and did well with it through the night, but we’ll be holding her at the 26k/cal mark until Monday. They don’t want to push her too much.

I did have to wake the Bun up at 5 this morning. The reason…they needed to get IV access. The purpose was to try and balance out her cortisol levels that may have been impacted by the steroid regiment she was previously on. Obviously Ella was not too pleased about the prospect of this. She was even less pleased because they tried 4 times over an hour period to get access (twice in the hand and once in each foot) without success. This was pretty much 60 minutes of non-stop melt down for Ella with nothing to show for it. Not a fun time.

The nurse who attempted placing the IV noted that Ella’s veins were clotting very quickly. This made me think about the night docs concern regarding Ella being too dry intravascularly. Over the last few days, it has seemed to us that Ella was still too wet because of some of her clinical behaviors and her saturations. I asked if clotting was a sign of her being too dry, and the nurse confirmed that it could be.

Although they couldn’t get an IV, they did get enough blood to run a BMP. Everything was inline accept her BUN…which was 34! In the past we relied on this number heavily to give us an idea of where Ella was from a fluid standpoint…that, and her clinical behavior. With her new medicine regiment though, we’re going to have the change the way we interpret Ella’s previous clinical signs. We thought she might be too wet, when actually she was too dry!

This did seem weird to me that last Wednesday she had a BUN of 9 and three days later, it’s 34. After talking it through with a doc, it sounds like the increased protein in her new food could be pushing it higher too. Either way, she’s still too dry, so we held off on one dose of her diuretic (aldactizide) today.

The fact that she is too dry does have a silver lining: we were able to get her to this place without the use of any loop diuretics (Lasix or Bumex)! Moving forward, we should be able to balance Ella out with the current set of meds, at least that’s how I interpret it at this time.

We’ve been trying to ween Ella’s oxygen too. She tolerated 1 liter for awhile, but I had to bump her back up to 1.5 liters in the afternoon because she was saturating in the upper 80’s / low 90’s for about 30 mins. As of this evening though, we’re back on 1 liter.

The only thing a bit off about Ella is she can desaturate pretty quickly and she can be happy one minute and then upset the next. Not sure what to make of this, but hopefully this will settle down in the coming days.

Today marks six weeks in the hospital, and I’m hoping we don’t need to stretch it another week. Trusting in our Lord for the timing of being discharged. Even though we want to be home, I don’t want to rush His work either.

I did find some perspective in the elevator today. I rode up with a mom who’s 19 year old son is battling cancer. Wow…that hit me hard. Cancer at 19. I know that God only gives us what we can handle, but He will often stretch us to the very edge of our capacity. Faith is grown during these spiritual workouts. I’m just so thankful that He’s blessed us with 14+ months with Ella.

Praising God every day for this sweet little Bun.

Ella slept well last night. Aside from the interruptions from nurses, she did pretty good.

The nurses came in to continue checking her blood pressure. The diastolic pressure remained low and they were concerned, so they kept coming in to check it. The pressure was still low by the morning. They kept getting different cuffs, trying to get it manually versus the machines – – anything to try and get a better reading. By mid-morning, the docs decided to go back to her dose of captopril to 1mg per kilo, three times per day. This seems to be more of what she can tolerate. Although today, her blood pressure remained low despite the reduction in the medication.

The plan is to let her blood pressures stabilize over the next couple of days. Once they are stable, see what level of oxygen she is using (right now, 1.5 liters down to 1 liter, based on Ella’s comfort). We know that Ella can be stable on less oxygen, so we think she might still be fluid overloaded.

Once her diastolic blood pressure in her heart reduces, then we can discuss if we want to give her a dose of Bumex or IV Lasix. As always, we will be watching all the clinical signs to make sure that she responds favorably (behavior, retching, drinking orally, heart rate, breaths per minute, overall comfort).

We talked with Dr. Fagan about the SVC procedure. We think it might be something we want to try at some point, but we would like to try and treat her condition with medicines for now.

Ella is tolerating the new feeds really well. At 4:30pm, they increased the caloric density and we are up to 26k/cal. This is great news…because they warned if they did not get her to take food, we would need an NJ tube. I’m so thankful about not needing the NJ tube – – Praise God!

Josh volunteered to sleep at the hospital with Ella tonight, so I could have some uninterrupted sleep. So I am going to end this quickly, so I can get my rest in. 😉

Ella had an okay day. I think she was better yesterday.

Overnight, she seemed more comfortable. Although I still was up several times, it was a little easier. When I would get up to attend to her, she was easy to console whereas the prior weeks has been lots of fussy behavior.

Her blood pressures were low intermittently and became really low in the afternoon and into the evening. They think it is due to the increased dose of Captopril that started last night. The nurses will definitely be monitoring her blood pressure closely. They might even need to adjust her Captopril dose overnight, since her latest blood pressure was 65/33.

They increased her formula to 24k/cal of EleCare (pre-digested food). She has been on a continuous feed at a rate of 30cc/hour. So far, she seems to be tolerating it just fine. We will see how she does overnight.

Besides food, there were no med changes today. They are just monitoring her clinically to see the effects of the increased captopril and watching her fluid status.

We think she is still wet, mostly based on her increased secretions and oxygen requirement of 1.5 liters. I just have that “mom sense” that she is slowly creeping in the wrong direction. I’m hoping that I’m not right.

We feel like she would be requiring less oxygen if she became more dry. There is debate among the docs as far as whether or not we should wait and see with the diuretic or give her a dose of Bumex. We will be discussing it during rounds tomorrow morning.

If everything stays on track and she continues to improve each day, they are thinking that discharge could be later next week.

In the meantime, we pray for Ella’s health and comfort. She is such a good baby. It is sometimes hard to reflect back and think about how much she has been through in her short 14 months of life. Our heart’s desire is to get her to a place whereby she can remain stable and we can float through the holiday season. We would really love to enjoy them with Ella in our home.

We praise Him for our nanny. We pray for her and her important role in Ella’s life, that she would continue to be a witness of your love.

This Psalm just stood out to me this morning. Many times we can feel forgotten and wrestle with thoughts about God and His intention for the circumstances in our lives. We can feel like things own us and can triumph over us. But at the end, we know that He has a plan and purpose.

Psalm 13
How long, LORD? Will you forget me forever?
How long will you hide your face from me?

I will sing the LORD’s praise,
for he has been good to me.