Ella had a pretty good day.

We met her new PT from the Early Intervention Program. When I opened the door to greet her, there was a man with her. I found out that they are a husband/wife team. I certainly did not expect two PTs, but that was a nice surprise. Things seemed to go smoothly, so I’m hoping that we have found a permanent, long-term match. If things go well on their end, there is a chance that they may start accepting our insurance. They will know in the next month or so. That would be great because it means that Ella would not be forced to use different PT therapists (one from Early Intervention and more frequent visits for a PT that accepts our health insurance). Only time will tell…

Ella is still requiring 2 liters of oxygen. It seems like her congestion is steadily getting worse. Her secretions are getting tougher and tougher to manage and thus, the retching has increased again. She retched 6 times, just during one episode in front of the PT this morning. I am sure anxious for the bronchoscopy. I want to know where these secretions are coming from and if there is something else we can give her to help, especially to eliminate the retching. We are back to 10-25 times per day. Before our last trip to the hospital, there were days where she retched 40 times in one day. We are not quite at that level, but pretty close.

We still did not hear from Dr. Kays. I sent another email tonight, letting him know that I was still waiting for his thoughts. He knew I wanted his thoughts when Ella was in the hospital before his vacation, but he didn’t have time. So, I just wanted to be clear that we still want his professional opinion.

Even though we have not heard from Dr. Kays yet, we are exploring the surgery schedule at the Children’s Hospital. I would really like to hear from him, but at the same time, waiting is getting old. We need to take the next steps for Ella, so we have more information to treat her and her symptoms lessen. I am hoping to hear back from the Children’s Hospital tomorrow. And of course, still hoping that Dr. Kays will answer us back too.

Shush…shhh….shhh. As I quiet my spirit, I hear this truth: His timing is perfect. So, I’m taking a deep breath, trying to be still and letting the truth resonate my spirit: He is God. He is in absolute control of every detail in our lives.

Psalm 46:10
Be still and know that I am God.

Ella stayed on course today: 2 liters of oxygen in order to maintain her saturations and heart rate.

Our pulmonology appointment is this Thursday at 3pm.  We’re hoping to get some answers!  This waiting game is not fun.

We heard from Dr.Kays today via email.  Unfortunately, we had some technical difficulties and he was not able to see the upper GI images.  So, I re-sent everything this morning and hope to hear back from him tomorrow.  Based on the weather report, I hope that everyone in Gainesville stays safe – – there is a tropical storm that may become a hurricane in Florida right now.

We have been trying for several weeks to find a home health care agency that would provide private duty nursing.  Initially, our insurance company has approved 20 hours per week.  However, there is such a shortage of nurses, especially in Colorado.  We called eight different home health care agencies and none of them could help us.  One positive thing about being in the hospital: the case manager called the top rated home health care agency and now, they think they can staff a nurse.  The director of nursing is going to come by and meet me and Ella on Friday afternoon.  Please pray that will come through for us.  It would be so nice to have that type of support, even if it is simply short term.

Also, please join us in praying for the right family for our rental home.  It has been vacant since early June.  The traffic was better in July, yet this month has been slow.

It’s so hard to see Ella in a place where you know something is wrong and yet, there does not seem to be any urgency on behalf of the doctors. So, we’re just daily trying to trust in the Lord for his timing, purpose and plan to be revealed.

Thank you for all the support and prayers – it means a lot.

We did not hear from Dr. Kays today which is a big bummer. I’m hoping tomorrow is the magic day.

Ella and I will be spending a majority of the day at The Children’s Hospital. She needs blood lab work done again, so we will be heading to get that done first. Once we finish, she has a hearing test scheduled. This is a follow-up to the initial one performed in the NICU at Shands which she passed. Babies that have been on ECMO are more likely to have hearing loss, so it is something that we always have to test regularly. Finally, we have an appointment with the pulmonology department. We have not spoken since the recent hospital stay. It will be interesting to hear their perspective on Ella’s current state.

I tried to wean Ella’s oxygen today around 2pm and watched closely. The change is not immediate, but within 2 hours, the pulse oximeter was beeping almost constantly. Her saturation is fine, but her heart rate is set to alarm at 180 or higher. So, I increased her oxygen back to 2 liters and within several minutes, her heart rate decreased. Once again, not sure why her heart rate is so elevated except that it seems that when she is working harder, her heart rate is higher.

We met a nurse today from the home health care agency; they sent her to see if it was a match for both parties. Unfortunately there was no chemistry. It was not a good match. I tried to be open and we met for about an hour. One of my biggest complaints: she never washed her hands! For those of you out there that are not in the medical field, a professional that knows they are going to be around a medically fragile infant should always walk in your home and immediately go to a washing station to de-cootie themselves. Anyway, that was a bummer that it was not a match. We’re hoping that they have someone else that might be a better match.

There are two other CDH babies that entered the world over the last two days. One has already passed and the other is still fighting for her life on ECMO. It is not important to know their names or details, but please say a prayer that the Lord would wrap these babies and their parents gently in His love.

It was not that long ago when we were walking a similar path. Today, one year ago, Ella had her repair surgery.

Most would have thought the worst was over and things would slowly get better. We had no idea that we were in for 5+ more months in the NICU. And yet, here she is today. Not feeling 100% well, but still smiling.

As always, just trusting in the Lord for His perfect timing and provision. If nothing else, this journey has taught us to seek, obey, and leave the consequences to Him.

Colossians 1:10-12
And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light.

Today was very busy and we’re tired! But I could not go to bed and leave everyone hanging! I will do my best to summarize.

I called The Children’s Hospital the other day and asked when we could schedule the surgery and bronchoscopy. When the phone rang this morning, they were calling to discuss time slots. I was trying to be proactive and get on their schedule. If I talked to Dr. Kays and he advised against surgery, I could always cancel the procedures. They penciled us in for Wednesday, September 3rd.

After leaving a message again for Dr. Kays this morning (I tried to stress that we have been in a holding pattern for 2+ weeks and that I really needed his thoughts), he finally called back this afternoon while I was driving Ella to the hospital. In a nutshell, he agreed with the doctors in Denver that she has a paraesophageal hiatal hernia. He noted that this is not uncommon for CDH patients, especially those that were missing a large part of their diaphragm. As she grows and the diaphragm stretches, one of the side effects can be a hiatal hernia. If she did not have any symptoms, he would hold off on surgery and let her continue to grow and get stronger. But since she is having so many symptoms, he recommends surgery soon. I asked if we held off on surgery and tried to manage her symptoms in other ways, could it heal or get better on its own? He said it will continue to stretch out as she grows and will worsen with time.

I expressed to him that I am nervous about having a surgeon here do the surgery since he knows her so well. He agreed with me because he knows that not that many surgeons here have experience with CDH babies. Also, that this area is right next to her diaphragm patch. At that point, he offered his time if the surgeons in Denver want to call him. He recommended that approach because she is not a straightforward case. He admitted that sometimes it is hard to get one surgeon to call the other, but if we can, he thinks it would be a good idea. Also, he welcomed us to come out to Florida.

The entire time I talked with Dr. Kays (15 minutes) plus the remainder of the drive, Ella cried. She was not consolable. I tried stopping the car and trying all the “normal” things. Nothing seemed to work. So, I just pushed through to the hospital so we could make our appointments.

First, we had the hearing test. By this point, Ella had been crying for 25-30 minutes and was exhausted. So she was asleep. They were able to administer 2 of the tests while she was at rest. One test required her to be alert and awake, which was not going to happen! They did see some things that seemed a bit strange, but since I have never thought she has experienced hearing loss and they did not have the awake test to see how she responded to noise, they deemed the tests inconclusive. They asked that we return in 3 months for a follow-up exam.

Next, we went downstairs to the blood lab. Fortunately, we were placed in a room with a nurse named Joe and he was a good stick. He was able to get into her vein within 2 attempts, which is good on Ella, and draw the necessary blood. It was over quickly. Since it always hurts Ella and she doesn’t enjoy the experience, the shorter the duration, the better. At least it went better than last week – – her arm is still bruised from 2 different nurses poking around several times looking for the vein.

Finally, we had a pulmonology appointment. Josh decided to meet us at the hospital. I was happy to see him because so much is at stake with Ella’s condition and we have some tough decisions to make. I wanted him to be able to interact with Dr. Abman and Dr. Lysinger, so that he could ask questions and we could get the information at the same time.

We had a great visit with both of them – – they are excellent doctors. They took so much time to talk with us and answer all of our questions and concerns. Ella retched during the visit several times and based on her body language, Dr. Abman thinks that she may have reflux occurring (related to the hiatal hernia). The Upper GI did not show refluxing, but that is not a perfect test for reflux (it could still be happening). He reiterated that many of her symptoms with the retching and even her pulmonary condition are likely affected by the hiatal hernia. He advised strongly that we get the surgery done soon.

We expressed that Dr. Kays agreed with the surgeons here in Denver. Dr. Abman admitted that he is biased, but gushed about how great Dr. Partrick is at surgery. This is consistent with what we heard when Ella was in the hospital. Plenty of nurses and doctors had nothing but great things to say about Dr. Partrick. However, Dr. Abman did think a surgical consult would be a good idea. Also, he is going to coordinate to ensure that a cardiac anesthesiologist is present for the procedure, due to her pulmonary hypertension and prior surgical history.

Dr. Abman confirmed that they have scheduled the bronchoscopy for the same time as the surgery. He confirmed that she likely is having some “floppy” muscles around her airway (which is common when babies are intubated for a long time). This could explain why she requires more air during the day than at night (normally our bodies are working harder to breathe when we sleep).

Then, we talked about her labs. Sigh…her BUN is 19 which is not great. We started to worry a bit because when she weighed in on their scale, she was 17 lbs, 4 ounces. Normally, we would jump up and down. But just 2 weeks ago in the hospital when they dried her out, she was around 15 lbs, 6 ounces. Ella gains true weight slowly. And even though Dr. Perry increased her food 100ccs over the past week (more fluid intake), there is no way that she gained nearly 2 pounds in 2 weeks. So, maybe she is getting some pulmonary edema again. That would certainly explain some of the extra oxygen requirement and heart rate going faster. Also, her potassium was low so they gave us a prescription to administer it to her at home for the next week.

In preparation for surgery (which is less than 2 weeks), I asked if we should do labs again next week. I certainly want her respiratory status to be good before she undergoes a major procedure. Even though they do not have clinic hours next week, Dr. Lysinger made an appointment just to see Ella. I thought that was really cool. So, we are going to the hospital next Thursday again for labs and a follow-up appointment to weigh her, check to see if she is getting wet, dry or staying the same along with her potassium levels.

Dr. Abman noted that Ella has not shown signs of pulmonary hypertension and stated that a side effect of the sildenafil could be an increased heart rate when it is paired with bumex. Since both of those scripts have been increased, that might be a cause too. So, he cut her sildenafil down 33% (a third less).

Josh asked specifically if there was anything else that we could do in the mean time to make Ella more comfortable, but something that would not have extreme side effects. We expressed how well Ella seemed to do when taking the steroids, but we know those have extreme side effects. So, they decided to place her on a inhaler of Flovent. So, now twice per day we have to use this inhaler with a spacer and mask. Tomorrow will be the first time we try that method. But because it is an inhaled steroid, very little is absorbed into the blood. So the side effect is minimal but it might help open her airway and make her more comfortable, especially prior to the surgery.

When we left, Josh and I both felt confirmed that Ella is supposed to have this surgery…and that she is supposed to have it here in Denver. On the one hand, we are nervous and it is scary but we know that the Lord will be with her and that He has a plan for her.

The title of the post might have thrown you for a loop. Today is the first day that Ella ever made noise in syllables. She kept trying “duh, duh, duh”. Before she would make noise, but it was a more continuous noise like she was testing her vocal cords. This was a more intentional noise, “duh, duh”. Admittedly, it made our hearts melt. She is normally so quiet; it is so good to hear her trying to make more noise.

Psalm 27:14
Wait for the LORD;
be strong and take heart
and wait for the LORD.

This has been our frame of mind for the past weeks. We have been actively seeking Him…waiting for an answer on the next steps for Ella…waiting on the next steps for me and if I should secure a job…waiting for God’s timing and for him to tell us “yes”, “no” or “wait”. Recently, it has just been “wait”. So although not everything has been uncovered, the reality of the Bun having surgery on September 3rd has hit home. Once again, trusting in Him and His plan and provision for this beautiful miracle He placed in our life.

Please pray that Ella will be able to maintain and get stronger for her upcoming surgery. Also, that we can coordinate a surgical consult; we feel that is important.

Finally, for us to be steadfast in Him. These next couple of weeks will be tough in many respects and the thought of seeing our baby girl endure more major surgical procedures is not a fun thought. Our journey has resonated with the truth that He is in absolute control and ordains all of our circumstances. We want to cling tightly to that truth as we enter into the next valley and always be aware that He is working around us all the time; we just have to look beyond our immediate perspective to see how he can take a painful situation and turn it into good for His glory.

Ella had a rough night. She woke up several times, sometimes just crying while other times coughing and retching. Normally, she is quiet for several hours and we do not hear a peep from her (sometimes her pulse oximeter alarms, but she doesn’t wake up).

In any case, it made for a rough night for all three of us. I’m so glad it is the weekend so we can all catch up on our zzz’s.

Ella coughed and retched so much this morning. Seriously, like 30 times by 9:30am; it was ridiculous. I sure hope that surgery and follow-up treatment helps.

Because of the retching and lack of sleep, we canceled the PT session this morning and rescheduled for Monday morning.

I am concerned about her fluid retention. I left a message for Dr. Perry so we could touch base, but he did not return my call.

Also, I called Dr. Partrick’s office to see about a surgical consult with Dr. Kays. His assistant did not call me back either! I’m just striking out.

It was a nice day in Denver and I needed to go to the bank to use the drive-up ATM and drop off one of Ella’s compound prescriptions. So, we got in the car and ventured out into the world for a little bit this afternoon. Man, the large portable oxygen tank sure runs out quick when she is on 2 liters.

Ella continued her talking today. I had to capture it by video, so we could share her new “duh, duh” with all of you!

Many of you have sent letters for Ella’s timecapsule which we will be sealing up in a couple of days. Thanks so much for taking the time and effort to send those letters to Ella. I know that she will be in awe some day when she reads them.

Ella normally naps for an hour or so and I wake her up around 8pm, so she can stay awake for a couple more hours. But I have tried countless times to wake her up, and she will not wake up!!! I even sat her up in her chair. She didn’t even have the energy to fuss or complain. She is fast asleep.

I’m hoping that she is just making up for those lost hours last night and doesn’t decide to wake up at 5am.

Josh is working late tonight, so its just me and the Bun putting on our pj’s and getting ready to ride into the weekend.

I got home from work around 1am this morning. Tina was already asleep, and I was tasked with checking the temperature in Ella’s room and changing her diaper.

When I entered the room I was a little bummed at what I saw. Ella’s heart rate was at 135 on 2 liters of O2 and she was in a deep sleep. This is higher than we’ve seen during the last few nights.

She started coughing around 5am this morning and when I went to check on her she was real congested. Her humidifier had run out during the night, and so had the water in her oxygen concentrator. Now that she’s been on 2 liters of O2, the distilled water in her concentrator evaporates a lot quicker. Instilling the moisture back in the air helped a little with Ella’s congestion, but she was having a hard time getting comfortable. Plus, her heart rate was even higher than it was earlier, jumping around the 170 mark.

She tossed and turned for a couple more hours, then Tina got up with her around 7:30am. Ella woke up retching, was still pretty congested, and was also more fussy than normal. Tina brought her downstairs and after hooking up her pulse oximeter the numbers confirmed what we already knew…Ella’s going the wrong direction.

While still on 2 liters of O2 she was saturating between 96-98 and she was looking kind of dusky. Her heart rate was real high too, between 175 and 185 while just lying there.

This was more than we are comfortable with because there’s not much headroom above 2 liters of oxygen.

Tina called the pediatrician and he agreed that her excessive weight gain plus her current numbers were indicative of pulmonary edema. He recommended we head in to the ER….and that’s where we find ourselves now. As you can see above, the Bun and Mom are still trying to have a good tim espite the circumstances.

We’ve been in the ER for almost 5 hours. They tried to get an IV again with no success. Ella’s was wiped out from the experience (lots of crying) so she’s zonked out next to me.

We’ll update again when we know more.

UPDATE 11:00PM MST – by Josh
We’re up in our room in the hospital and Ella is sleeping soundly.

It took three more tries before they were able to place an IV. They didn’t get it the second to last time because Ella overpowered one of the nurses and moved her foot right when the catheter was being set and it pulled out. They then had to find another vein in her foot. I held her down the next time and they got it. MAN THE BUN IS A FIGHTER!!! Not that I didn’t know this but it took all I had to keep her still!

The Lasix is on board now and we’re hoping to see some of this fluid come off. Tina and I will both be spending the night in the hospital with plans to be in our own bed tomorrow night. Hopefully Ella has the same plans :-).

Please pray that the Lasix will do the trick and that we can find the right balance of meds to stabilize Ella moving forward.

Thanks for all the love and support.

Ella was stable last night, and although she had a huge diaper from her Lasix (190g), it wasn’t quite enough to get her over the fluid hump. Ella’s heart rate is still elevated and her BUN this morning was 19.

After talking it over with the attending pulmonologist, she decided to giver her another round of IV Lasix this afternoon, increase her Bumex to 1.5mg twice per day, and start her on another regiment of Prednisolone.

We were hopeful that we would be discharged today, but that thought was quickly dashed once we determined our plan of attack. At this point, we’re not exactly sure when Ella will be heading home, and she may even be in here until her day of surgery.

The main reason we’re in the hospital is to stabilize Ella for her surgery on the 3rd of next month. Considering her behavior over the last few days, Tina and I are feeling more convinced that her hiatal hernia is contributing to her current condition. For this reason, we’re feeling more confident that the surgery will be a good thing for her.

As I write this, Ella is taking her afternoon nap and Tina is out running errands. It’s time for the Bun’s 3 o’ clock feed so I’m gonna go. We’ll write more as it happens.

Thanks for keeping up with us!

P.S. We did a few updates to the site over the last couple days. We’ve added a “Contact Us” page as well as a “Summary of Ella’s Journey” to the menu above. Plus the fun little Lilypie age counter.

Yes, we are joking, but the views are really nice. This room is facing west towards the mountains. The hospital tower next to us is blocking the downtown Denver high rise buildings; that might be the only downside to the near-perfect view. This room is also a tad bit bigger than the last one. Since we are going to be at this hospital so much over the years, we just thought it would be cool if we could reserve one in advance.

The Democratic National Convention is being held in downtown Denver this week. The benefit for us is that Josh is allowed to telecommute this week (too much traffic and potential chaos near his office). This was unforeseen timing, but a nice perk. They have amazing internet speeds at the hospital and a built-in desk in the room. He sits off to the side with his headphones attached and works away. When it is time for a break, it just makes the hospital stay so much easier with two of us to always watch Ella.

Ella did pretty well overnight. She only woke up 3-4 times, which is better than the last time she took steroids. Although they think that since only 12 hours had passed, the steroids did not have a chance to take full effect. We’re expecting that tonight might be a bit more restless, but hoping for the best.

When I ran errands yesterday, they decided to do another blood draw. They told me it was scheduled for 6pm, so I made sure I would be back by that time. Instead, they showed up at 5pm and Josh was left to support Ella through it on his own. And trust me, these episodes are really tough. Ella cries and screams her loudest, tries to break free, turns blue/purple with eyes darting around. The pulse oximeter alarm beeps from lack of oxygen and a high heart rate. Blow-by oxygen is a must for her. By the end, she is soaking wet from sweat. It requires 4 people to be successful. She is so strong that you need one person drawing the blood, one helper to hand things, one to just hold her, and me or Josh to console her and hold the blow-by oxygen. It is crazy and even if the episodes only last for 5 minutes, it feels like it is so much longer.

Apparently, the draw last night was another heel prick. This was the second heel prick for the day, same heel (the other foot had her IV with the go-go boot already). They were not successful getting it right away either, so they were having to prick more than once. Ella got so upset and so worked up. Heel pricks sound like a good idea because 1) they are less invasive and 2) Ella’s veins hardly cooperate for an arterial blood draw. But, the downside is that the blood can hemolyze which means that the hemoglobin has been liberated from the red blood cells. So, the red blood cells are destroyed in such a manner that hemoglobin is liberated into the medium in which the cells are suspended. This is the biggest risk with the heel or finger prick blood-drawing technique.

This is the second time that they have done a heel prick while we have been in-patient at the hospital and her blood hemolyzed, so none of the numbers we needed were available. Basically, it was all done in vain (no pun intended). This is why when we go to the outpatient lab, I always ask for an arterial blood draw, even though it is tricky. If we are going to put Ella through the trauma, I want to make sure that it is getting us the information that we need to manage her care. But since it took 4 painful episodes to get an IV the night before and the heel prick worked yesterday morning, they made the decision to heel prick. Yesterday’s episode just further confirmed that heel or finger pricks for Ella are not a good idea and we should avoid them.

The IV in Ella’s left foot decided to not be viable when the nurse flushed it this afternoon. So, they went ahead and took it out. Ella was glad to get her foot back albeit bruised. The one bummer: the nurse thought she held Ella’s foot long enough with sufficient pressure to stop the bleeding. She put on a band aid and left the room. Ella was crying, so I picked her up to console her. When I set her back in the bed, blood was everywhere! This is when it helps to have another person around. I yelled for Josh’s help, and he applied pressure to her foot with a paper towel, while I hit the call button and tried to prevent blood from getting all over our personal belongings! It ended up all over my shirt, the floor, her bed, her blanket, etc. Thankfully, I had an extra shirt handy and hydrogen peroxide is a fabulous chemical for the removal of blood on clothing!

Overall, Ella is heading the right direction but it is just slow. Last time, it does seem like she dried out quicker. So, I’m not sure. We are supposed to have a blood draw at 8:30am tomorrow morning and once those come back, we’ll see how she is doing from a dryness stand point. Her overall weight has decreased a little, but not significantly. Her urine output has picked up. Just her diapers from 11:45pm last night till 3:30pm have been 705 total. That is good considering that she intakes 800ccs of formula plus 240ccs of water each day. I think today was the first 24 hour period where her output was slightly negative (output a bit more than she took in). Plus, she seemed like she was feeling a little bit better than yesterday.

Her heart rate and saturation seem a little bit reduced while she is awake, but right now she is taking an afternoon snooze and she is 100% saturated and heart rate is 110. That is a huge change from a few days ago before we came to the hospital. It is also more like her baseline, but again, she is on 2 liters of oxygen.

Their thought, unless she does a major turn around, might be to leave her in the hospital until her day of surgery. Since they do not know if her increased dose of Bumex is enough to sustain her from a dryness standpoint and they want to make sure she is not compromised in anyway or starting to head in a bad direction, they feel it may be the safest option.

This means staying here for another week, and then wheeling her to the OR on Wednesday, Sept 3rd for her surgery and bronchoscopy. Following the surgery, she will likely need to stay for another week or so to recover. Thus, the light-hearted joke about a timeshare.

Back to being serious, we are still just waiting on Him. Slowly but surely, things are coming to fruition. He has confirmed that Ella needs surgery and that it needs to happen in Denver. Even though we do not enjoy living at the hospital, we agree that it is the best and safest option, especially with her upcoming surgery in 8 days. We’re asking Him to prepare Ella’s body for her surgery, for wisdom for all the doctors involved in her care now and at surgery, and for Him to prepare our hearts for the next couple of weeks.

I realize that the scripture below might seem long, but I think it truly gives encouragement and hope in these times.

2 Corinthians 1 (The Message: The Bible in Contemporary Language)
I, Paul, have been sent on a special mission by the Messiah, Jesus, planned by God himself. I write this to God’s congregation in Corinth, and to believers all over Achaia province. May all the gifts and benefits that come from God our Father and the Master, Jesus Christ, be yours! Timothy, someone you know and trust, joins me in this greeting.

Now that the worst is over, we’re pleased we can report that we’ve come out of this with conscience and faith intact, and can face the world—and even more importantly, face you with our heads held high. But it wasn’t by any fancy footwork on our part. It was God who kept us focused on him, uncompromised. Don’t try to read between the lines or look for hidden meanings in this letter. We’re writing plain, unembellished truth, hoping that you’ll now see the whole picture as well as you’ve seen some of the details. We want you to be as proud of us as we are of you when we stand together before our Master Jesus.

It’s been a long day.

Ella is stable. We had a blood draw this morning. They sent James Brown (yes, that is his real name), who is known for his abilities, to draw labs from Ella. He tried in her foot once and noted that her veins would not cooperate well. So, he located a spot on her head and drew the blood from there. It was hard to watch but ended up being over and done fairly quickly, and without too much torture to Ella.

Her labs came back and her BUN is 19, the same as Sunday. So, we have not made much improvement over the past 2 days. The steroids are helping to lower her heart rate. But, she even had a slight weight gain this morning. This means that she is still fluid overloaded. We are not seeing the low heart rate and lower breathing effort like we did during the last hospital visit, but she isn’t as dried out either.

We are going to discuss with the morning doctors the best plan of attack. They do not have IV access, so Lasix is no longer an option. I suggested that maybe we try and incremental dose of Bumex instead of Lasix to see how much that impacts the scenario.

Since we do not have IV access plus she is getting ready for surgery, we also discussed the idea of a picc line (a peripherally inserted central catheter). This might be a solution to getting labs, inserting Lasix or any other meds directly into her bloodstream without having to poke her each time.

Cardiology came to do an echocardiogram today. They want to make sure that the pulmonary hypertension isn’t acting up and playing into her current status. We should have the results tomorrow.

In the bigger picture, Ella is much improved from Saturday when we brought her to the hospital. But clearly, she is still having some respiratory compromise.

Keep the prayers coming that the doctors can take the right steps in the next few days to get her stronger in preparation for surgery.

Thanks to all of you for the support and encouragement.

Isaiah 26:3-4 (New Living Translation)

You will keep in perfect peace
all who trust in you,
all whose thoughts are fixed on you!

Trust in the Lord always,
for the Lord God is the eternal Rock.

Today was the tipping point where Ella started to do a bit worse clinically. Fortunately, the doctors took note too.

This means that the increase in Bumex to 1.5mg twice per day, is not doing the trick to keep her dry. Her BUN yesterday was 19; it has not gotten better. And if anything, she sounds more wet today.

It started with 2:30am wake up call. Ella was having so many secretions that it was tough for her to breathe. Finally after suctioning her, she was able to go back to sleep. The trend continued the entire day where she required suctioning multiple times. Each time was a major episode where she desaturated and required blow by oxygen. She HATES being suctioned and literally turns her purple-blue color.

She was coughing a lot too and you could just hear her congestion and overall challenge with breathing. It was a tough day for me and Josh. It is so hard to watch her be miserable and not be able to do anything to help her. When you are around it constantly, it starts to wear on your emotions.

The plan today was to give her an increase in diuretics. I proposed giving an extra dose of Bumex. But we found out that she is already at the max dosage for her weight. She doesn’t have an IV right now, so we can’t give IV Lasix. The pulmonologist, Dr. Wagner suggested an oral dose of Lasix. As we have explained to multiple professionals at the hospital, Ella does not tend to respond to Lasix given orally.

For those of you that have followed our story for months, Dr. Kays had a tough time transitioning her from IV Lasix to oral Lasix back in the NICU. It was one of the mysteries that kept her in the NICU. Her body never responded the way we needed it to when administering Lasix orally. Since Bumex is also a loop diuretic and is 40x stronger than Lasix, we switched and started giving her that one. And once we left the NICU, we had to go back to the hospital 4 days later since we didn’t even have the perfect dosage of Bumex. This is a classic issue for Ella and the dosage can change as she grows, gains weight and her volume of fluid/food changes. It is a constant balancing act.

In any case, Dr. Wagner stated that the reason Lasix orally did not work for Ella is because likely it was underdosed. Most commonly, hospitals or doctors will double the dose. Apparently, even doubling the dose does not have the same impact as IV Lasix. The true conversion is 7x, but he admitted most medical professionals are not comfortable increasing it that much because it sounds like it is too much. In that vein, he recommended giving her a 4x concentration amount. Although we had this sense that it would likely not work, we conceded. There are times when we can tell them something about Ella that we believe to be true. The reality: we might be incorrect or as long as it is not harmful to Ella, it is better to let them try and learn by their own experience rather than parents trying to convince medical professionals of a truth about our baby girl.

Finally, it was 3pm and we had not heard anything about receiving the dose of oral Lasix. Keep in mind that we have had multiple episodes with Ella today and she is having a tough time. So the sooner we can get the oral Lasix experiment started, the better she might feel. She always responds better when she dries out.

When we went to inquire, we learned that they wanted to give her the 4x concentration of oral Lasix, but wanted to space it out into two doses. This is where we decided to put on foot down on the issue. Our prior experience has shown that Ella does better with a blast of diuretic, a strong dose. This is one of the reasons that IV Lasix probably works well. It sends the message loud and clear to her kidneys to clear out.

After talking it over, we convinced them to at least try and place the 4x concentration into one dose and not 2 doses spread out. Again, if we already have experience showing that 2x concentration is not enough, why do the exact same thing and not gain any ground? Ella is not feeling well and we need to take steps in the right direction. This is especially important over the next 2 days. The weekends are always tougher to get clear direction and decisions for care.

We tried the dose of oral Lasix on an empty stomach to help improve its effectiveness (again, based on what we already know with Ella), and she only peed a total of 135 between 4:20pm – 9pm. We had a feeling that it would not give us a huge jump. Her urine output is evidence of it. The only last chance of it being effective: does it give a boost to the effectiveness of Bumex? Not likely. If it turns out that it is not shown to make a huge difference, we’re hoping that they believe us from this point forward on the use of oral Lasix.

We have noticed that the steroids have helped when she is asleep. She will saturate 100 and have a heart rate of 115, which is definitely promising. I just wish that she was not still on 2 liters. And of course, as soon as she wakes up, she has all kinds of issues breathing.

The other reality: the doctors can’t differentiate her symptoms. It is tough to tell how much of this scenario is being caused by the hiatal hernia. They don’t feel that they will have an accurate picture until after surgery. Maybe this hiatal hernia is just causing more respiratory problems than we think.

We still think that regardless of the surgery, that she is too wet. Her symptoms line up with what we have seen multiple times. But time will tell the true story.

We are not sure what the plan of attack will be tomorrow. We are going to request that we no longer try oral Lasix. Since we have hit the maximum on Bumex, there is a different diuretic that they can try (tends to cause more electrolyte problems) or we can try for another IV and give more Lasix. Even though IV placement is horrible, I think we are leaning more towards that solution simply because we know it will work. It is scary to introduce another diuretic into the whole mix. The other reality: they could limit her intake of food for this time which they have not done up till now. It is not a perfect long term solution but in the short term, it could help dry her out in preparation for surgery and they could reassess post surgery.

Josh ran home to go into our crawl space and grab a blow up mattress. We’re not sure if they still work, but we have to try something different. Sleep the past four nights has been rough since they do not have a good set up for 2 parents to sleep in the room. We’re hopeful that one of the air mattresses will work, so we can catch some good sleep tonight. We need it badly!

Please pray that Ella will feel better (today was a rough day for her and her parents) and that the doctors will be given wisdom and insight to know the next best steps. Also, that we can catch much needed sleep tonight in our hospital room (all three of us). And as always, that we will continue to seek Him and His will for our lives. We’re not sure what He has planned or what all of this means, but we desire to trust Him and rest in the truth that His plan is always best.

Proverbs 16:20
Whoever gives heed to instruction prospers,
and blessed is he who trusts in the LORD.