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 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.

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 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.

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.

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.

Last night was tough. Sleep was not happening. Decisions regarding Ella’s care were needed throughout the night.

The day before, we had lots of tummy trouble and struggled with feeds. By the time we got together a new plan to use the Peptamen Jr., we had skipped two whole feeding times for Ella. Her last diaper was at 3pm on Wednesday. As we went into last night, we were discussing her progress and adjusting our plan nearly every hour. Why? Ella was not urinating.

The first concern at midnight, then 1:30am. They were debating whether or not to give her an IV. Her dose of Captopril had increased on Wednesday, but food intake was lower and all other diuretics and meds were the same. With her increased heart rate and lack of urinating, could it be possible that Ella was too dry?

At one point, we compromised to add an additional 10ccs of Pedialyte to her nightly feed along with her formula. Yet after 2 hours, still no urine output. So we had another debate on the possibility of placing an IV. We were trying to think of other solutions that did not involve an IV. It was tough: Josh and I were feeling like our brains were not working. We were just too tired.

At 5am and 14 hours without any urine output, we decided to turn off the formula and switched to her Pedialyte solely. Since it is easier to digest, it would be a more effective agent at getting the fluid into her system. Kidney failure was a brief topic that surfaced. We prayed fervently and drifted off to sleep until 7am. It was agreed that if she did not have any urine output by that time, that we would concede to an IV.

Shift change happened at 7am and no urine output. As 7:30am approached, the nurse was doing vitals and discussed that the IV and labs would be happening momentarily. I think Ella must have heard the nurse talking. As she lifted Ella onto the scale to weigh her, the Bun started peeing! She soaked the blanket. Praise God that she finally took a pee!

The Pedialyte was effective at putting fluid back in to her system, so we continued until 1:30pm in the afternoon without a break. Her labs confirmed that she was dry – the BUN was 30. Since it is not good to be “too dry”, they wanted to make sure to get fluid in her quickly.

Ella has still been sensitive to feeds and volume, but we started her back on formula for her 3pm feed. We are able to deliver at a run rate of 40ccs per hour; anything higher causes too much discomfort. Over the coming days, we will need to work up to bolus feeds of 100ccs which was our baseline before surgery. We will make good progress during our hospital stay, but it is reasonable to expect that we may be hooked up to a food pump for a while, even once we go home.

Once again, respiratory status for Ella was great today. She is very dry, so that is not surprising!

I think the tummy trouble improved today. It was the 3rd day of taking Prevacid and I feel that is what made the difference. At her 3pm feed, I gave her Maalox to help with her discomfort. But during her 6pm feed, she took it fine and did not require any meds (that was a first). I took that as a huge sign that she is getting better with feeds.

Tonight, her overnight feed is running for 10 hours at a rate of 40ccs per hour. We are hoping for a restfull night’s sleep and lots of urine output!

Speaking of urine output, we took the first step to change/reduce Ella’s diuretics. Because she is so dry, the opted to cancel the Bumex dose that was due at 9pm tonight. We are excited…we’re not sure if Ella’s body would tolerate discontinuing the Bumex dosage completely, but that’s our prayer. The Bumex is just a really strong diuretic and they are concerned that her kidneys may have gotten used to it. So it has become less effective over time due to chronic use, is adding to her nephrocalcinosis and requires that electrolytes be monitored closely (lots of sticks for blood work).

We hope for Ella to urinate tonight and have a BUN that is in the normal range tomorrow (12-18), without any respiratory distress. This way, they can continue to increase the Captopril dose and decrease her diuretics. Also if feeds go well overnight, it will be considered “official” that Ella is tolerating Peptamen Jr. That is another positive step forward.

I can’t believe that we have been here 19 days, almost 3 weeks. The “art” of tweaking all these elements for Ella could still mean several more days in the hospital. They have never mentioned discharge, but our instinct would be the middle of next week, at the earliest.

Please pray for the three of us as we drift into sleep at the Children’s Hospital tonight. We really don’t want another sleepless night in Denver.

We praise Him for Ella Renae. We’re thankful for His providence and His plan. We know that He promises to take care of us and is with us every moment of every day. We’re so thankful for Him bringing us to this hospital and for all the doctors that are helping in Ella’s care. We’re so pleased that Ella did so well in surgery and that she is on the path to recovery. We thank Him for all the lives Ella has touched and thank Him ahead of time for all of those she will bless in the future.

Psalm 28:7
The Lord is my strength and shield.
I trust him with all my heart.
He helps me, and my heart is filled with joy.
I burst out in songs of thanksgiving.

Ella did good last night as far as sleep, but they still worried about her urine output. So at 1am, they switched out her formula for Pedialyte. She went on that until 7am to help place some of the fluid back into her body. Yes, this meant that the parents got a bit more rest – – praise God!

When labs were drawn this morning, her BUN was 23. In the past, that would have been a great place for Ella. But now that Ella’s true issues have been resolved, a BUN of 23 is still on the dry side (normal is 12-18). So, they are hoping to see her BUN get into the normal range over the weekend.

Because she is a bit dry, her heart rate is higher than normal by about 30 beats. It will be interesting to see if this gets corrected once she stabilizes.

Once again, we had challenges with feeding today (gas, gagging, retching, etc.) but each day is getting better. The plan is to keep her on the Peptamen Jr all night and not switch to Pedialyte, regardless of urine output. They want to see if she will urinate in the morning.

The good news: they discontinued Bumex again today and also discontinued Diamox, which also has diuretic impacts on the body. So now the only diuretic she is using is aldactazide. And the captopril has been amazing for her. I still cannot believe she is doing so well and is not relying on diuretics.

The plan for the weekend: get her less dry in a normal BUN range, push through the feeds and do our best to push her on the volume/rate of food she intakes during the daily feeds.

They will still assess her progress and medications over the weekend. We’re hopeful that the diuretic dosage will continue to be minimized.

All in all, Ella looks fantastic. We have our anomalies to figure out over the next few days, but she looks amazing and seems happy and comfortable.

I’d love to write more tonight, but I am fading fast. I will just end with this verse.

Psalm 111:4
He has caused his wonders to be remembered;
the LORD is gracious and compassionate.

That beautiful girl is Ella Renae silly! The person standing next to her is Miss Poland International™ Anita Brzeski. She was visiting the hospital to bring some smiles to the kids.

Typically, the volunteer visitors are comprised of the canine variety that come by to bring joy to the kids who aren’t feeling too well. We’ve had a few dogs stop in and love on Tina and me since we’ve been here.

That is what made this meeting a bit funny because the hospital representative had knocked on the door and asked if we wanted Ella to have her picture taken with…. and I didn’t quite hear what she said next. Miss Poland was not at the door when she asked this, so I was anticipating a dog entering the doorway at any moment. Needless to say, it was no dog. =)

You can see in the picture that Ella was more interested in the princess on the screen than the one standing next to her. Anita was very gracious and asked about Ella’s story. I told her a little about the journey Ella has been on and what a miracle our girl is. It was sweet of her to stop by and take some time to meet our girl.

Tina left us this morning to go show our house, run some errands, and just escape the hospital for a bit. Grandpa Joel (Tina’s Dad) brought me lunch and afterward we took Ella on a little walk around the hospital. It was such a gorgeous day here, we had to get out.

Overall I think Ella is doing real good. She’s not showing any signs of discomfort from the surgery and her incision is healing up nicely. We’re still trying to find the balance of meds that are going to work for Ella moving forward. Her BUN was 22 today so the docs decided to discontinue all of her diuretics. Tina and I are real happy to see her come off them, we just hope she’ll be able to maintain a steady balance in the coming days.

At this time she’s not showing any signs of respiratory distress, but her heart rate has been more elevated (170 awake, 145 sleeping), and she was not 100% happy today. There are a lot of things that could be contributing to this, including the fact that she’s cutting a tooth (wow…a normal baby thing) :). We’ll be keeping an eye on this closely though.

We’re still trying to increase the volume of her feeds and as of today she’s up to 75ccs over a 90 minute period, 5 times a day, plus her overnight continuous feed. We’ll be pushing her forward in this area as much as we can so she can be as close to her feeding goal as possible before we go home.

Thanks to all of you for the love and prayers that continue to strengthen us daily. Please pray that Ella will stabilize nicely on her medicine regiment, for her to tolerate her food increase, and for her overall progress. Please also pray that the Lord will give us wisdom and discernment in the coming days and that Tina and I would catch up on our rest as well.

Thank you Jesus for our beautiful little princess.

It was another restless night for Ella. By the morning, she started coughing and retching a lot. You could hear the secretions in her airway. Since they discontinued all of her diuretics yesterday, the thought is that now she might be getting a bit “wet” again.

Her heart rate while she was just laying there watching her video was between 175-185. Her urine output for the last 24 hours was down a bit. And then the scale told the story, she increased from 7.7 kilos to 7.84 kilos overnight.

So this morning, the doc went ahead and added a low dose of the combo diuretic back into her regimen (aldactazide). But instead of dosing it 3 times per day, she added it back for twice a day. Once again, just taking the time to figure out the art of the right medications to put Ella in the best place. Now if everything goes great, maybe we can think about returning home at the end of the week.

Since Ella wasn’t feeling great, there was lots of fussy behavior. Some days are harder than others and it was one of those days where you wish you could switch places with her, just to give her a break. I can’t imagine feeling the way that she does each day. And yet somehow, she finds a way to break a smile here and there.

The Bun is making slow progress with food. The fussiness and discomfort are there but we are slowly adding more food to her daily feeds and stretching out her belly. Today, her bolus feeds were at 80ccs over an hour and a half. Our goal is 100ccs over an hour and a half. Then, we will look to reduce the hour and half on the food pump down to bolus feeds.

We were finally able to give Ella a real bath tonight. I think we enjoyed it more than she did!

After the bath, a manicure was necessary! Josh was taking pictures and it made him reflect on another time that he was taking pictures of this same event in the hospital. Wow, what a difference a year can make.

On a personal note, our rental home in SE Aurora has still not rented. We have advertised it for 4 months now. Since it remains vacant, we recently asked God if He was trying to get our attention and wanted something different from us. A week ago, we put both our rental home and our primary residence (our Lone Tree townhome) up for rent. With everything else going on, we cannot imagine having to move. But clearly we want His will to be done in our lives. Please join us in praying that He would make it abundantly clear for us and that if He wants us to move, He will provide the resources to make it happen.

Thank you so much for the support and prayers. Each day we find moments to tell new acquaintances about Ella Renae. We send them to this site to read her story and see how God has worked in our lives during this challenging time. It seems like one life at a time is touched.

Although the journey is hard and the road is tough, our faith and dependence on God has been enriched far beyond our imagination.

Lamentations 3:19-33 (The Message)

I’ll never forget the trouble, the utter lostness,
the taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember—
the feeling of hitting the bottom.
But there’s one other thing I remember,
and remembering, I keep a grip on hope:

Why? Because the Master won’t ever
walk out and fail to return.
If he works severely, he also works tenderly.
His stockpiles of loyal love are immense.
He takes no pleasure in making life hard,
in throwing roadblocks in the way.