Posted (Tina) in All Posts on September-20-2008

Ella’s heart is still racing, but she seems to be behaving more like herself.

Dr. Abman advised on rounds this morning. For now, we are leaving the Captopril and Aldactazide the same. He wants to decrease her Sildenafil dose slowly over the coming days. He thinks that the combination of meds might be impacting her heart rate.

Also, they gave her another round of Bumex this afternoon. Her urine output was favorable and she started to seem more comfortable.

We are hopeful that we can go home this week, as today marks 4 weeks in the hospital.

On another note, we’ve shared about our heart in waiting on the Lord for direction in our lives. It seems like one week ago, things started to become clear. Prayers were answered in obvious, remarkable ways and now it is time to share.

As you know, our rental home in SE Aurora has been sitting vacant for 4 months. We were so blessed last year while we were in Florida to have this amazing family rent and take care of our home. We were hoping for another family to occupy it and have been waiting and waiting and waiting. Finally, we thought that maybe the house was not renting for another reason. We knew deep down what it might be, but have been resisting the idea: moving back into our home.

We asked for clear guidance from Him as we placed our townhome (our primary residence) on the rental market. Within one week, we have a signed lease. Yikes. We are so happy that He answered our prayers and has made it clear what He wants us to do.

Many of you have asked if there is any way that you can help us. If you are local in Denver, we NEED your help. Otherwise, we are literally not sure how to make it all happen. Our new renters want to move into our townhome fairly quickly. Our move date is Saturday, October 11th. We have hired professional movers for the move day, but could really use help packing our belongings for the truck. If you are interested in helping out over the next few weeks, please use the “Contact Us” feature on the site. Once we have the details, we will send an email to all those that are interested in helping.

Along with moving into our home, we have been praying about direction for me. The Lord worked on my heart the last few months. I began to realize that I really enjoy taking care of Ella; I just need more balance in my life. As a couple, we need more balance in our lives. It would be nice to have date nights now and again. Also, we would like to attend church (we can’t take Ella due to her medically-fragile state).

So, we have been asking Him to provide guidance and direction. Did He want me to continue to stay home with Ella full time for a longer season? or did He have something else in mind? I have been in discussions with a company since early July. Interestingly enough, they found me through a business associate and pursued me. From the very beginning, Josh and I both felt that His hand was moving. But we knew that if it was the right thing to do and it was from Him, He would make it clear and work out all the details. Just a few weeks ago, it seemed like the opportunity died. I took that as a sign that He had something better for me. Then within the last week, they made me a great offer. From the beginning, I explained my situation with Ella and that I would not be able to start right away since we would need to find the perfect nanny for her (and now, we have to move). They are willing to work with me on the timing. Things will be finalized this upcoming week, but it looks like I will be starting 7 weeks from now.

So between the clarity on moving back into our house as well as my new job opportunity, life seems to be moving fast. Our goals in the next few weeks: move back into our home and find the perfect nanny for Ella. On that note, we want a live-in nanny for Ella. This way, we can leverage the space in our house as part of the compensation (nanny can have a private bedroom and bath). We really want someone that can become part of our family; someone that wants to love Ella. Seeing how His hand has moved over the last several weeks, we trust that He is going to provide just the right person.

Please join us in praying for Ella’s comfort and continued healing. Also, that the doctors would figure out just the right doses of medications for her. Moreover, that He would provide the resources and help to make this move over the next few weeks possible. Finally, that He would place the perfect live-in nanny for Ella directly in our path.

We praise Him and thank Him for where He has brought us. Although the past few months felt like an eternity, praying day after day for direction, it seems that things are lining up. The best part is that it is His timing and His direction. So although we have fears about how all of this is supposed to work, we cling tight to His promises.

Matthew 6:25-34
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Posted (Tina) in All Posts on September-19-2008

Ella slept better last night. It was nice to get 5 hours of solid sleep.

As I would wake and look at her numbers, her heart rate was still fast 160ish (the lowest was 140) and I could hear her breathing 60-70 breaths per minute. This was while she was asleep.

Everything went well until I had to feed her in the morning. We were set to do 70ccs of formula and 30ccs of Pedialyte. She barely tolerated the food, but we managed through it.

By the time she woke up, she did not look good. She was behaving like she was fluid overloaded. The fussy behavior along with lower saturations, high heart rate and increased work of breathing were all the clinical signs.

When we went to weigh her, she had significant weight gain – 7.9 kilos to 8.18 kilos overnight. It seems that the “bolus test” of Pedialyte fluid yesterday afternoon (168ccs of extra fluid) pushed her over the edge. While she was on the scale, she was crying and not consolable. All of a sudden, she let out a bunch of diarrhea on the scale. Her tummy was hurting. The docs think she had too much Pedialyte and it gave her the runs. Thankfully, it was only once this morning.

When the docs did rounds, they caught Ella at the height of her misery. This was good for them to see her in this condition. Sometimes you try and explain all the clinical signs, and yet when they examine her, she looks better. That can be frustrating.

When Josh and I brainstormed on what might be causing the high heart rate, we looked online. We found that an “uncommon” side effect of Captopril is a rapid heart beat. Gee, leave it to Ella to be in the 1% category for side effects! In any case, we thought about it more and Ella did start having this problem when they gave her the Captopril. And actually, it has gotten worse as they have increased her dosage. The bummer: the Captopril is having such a positive impact in that she is not requiring as much diuretic and her blood pressure is lower. Her recent echo shows improvement. But now, we think the Captopril might be the reason that her heart is racing.

To be honest, the docs this morning look puzzled and don’t really know what to do with Ella. They gave her a one time dose of Bumex to help get the fluid off of her this morning. Once the dose hit her, she urinated 520 grams in a 4 hour timeframe. That is a lot! Within that time frame, her color looked better and she was feeling more comfortable. Also, they reduced her Captopril to 1.0mg per kilo this evening and left her aldactazide the same. Her heart rate is still high, but she was breathing a bit easier. Right now, she is asleep and her heart rate is 165 (should be 105-115).

Since the docs are scratching their heads, they invited Dr. Steve Abman to rounds tomorrow morning. Technically, that is Ella’s pulmonologist. But he is consulted mostly when the other docs can’t figure something out. He is an amazing doctor. I’m hoping that he will have more insight. I’m preparing my heart and mind for the worst news: they might have to perform a cardiac catheterization. This is a procedure to examine blood flow to the heart and test how well the heart is pumping. We have avoided it thus far because it is invasive. And they figured if they could try the Captopril and it worked, then there would be no need for the cardiac catheterization. But since the Captopril is not turning out to be the magic bullet, I would not be surprised if Dr. Abman recommends the cardiac catheterization, so that he has more information to analyze.

Josh is working late, so Grandpa came to have dinner with me and hang out. During shift change, I was holding Ella and talking to the nurses. Grandpa was getting ready to go downstairs to get us some sodas, saw the commotion and smoke was coming off his tennis shoes as he headed down the hallway. Ella’s g-tube fell out. That was fun. NOT! The nurses we were assigned to tonight (one regular nurse and one student) didn’t really know what to do. I stepped in and got the g-tube back into Ella. It’s not hard to do, just not fun.

I gave Ella a bath tonight and changed her cannulas. The tape we tried earlier this week broke out her face. Her poor skin is raw. So we are going back to the good ol’ Medipore tape that seems to work best.

She looks less puffy tonight which is good. I’m hoping for another successful 5 hours of sleep tonight. The sleep is happening only because we are not pushing food in her belly overnight. We are just doing one bolus feed before she goes to sleep and one in the early morning.

We’re blessed to have such an amazing little girl. Thank you for all the support and prayer coverage. It really makes a difference to know that there are lots of people out there that love Ella and lift the three of us up in prayer.

Posted (Tina) in All Posts on September-18-2008

Today was packed.

We tried bolus feeding Ella last night, once before we went to bed at 11:30pm and once at 5:30am. It worked so much better! We were still up a few times with the nurses doing vital signs and venting her, but at least Ella was not in a lots of pain from feeding. That part was reassuring.

At 10am, Ella went downstairs to radiology to have an upper GI test. It does show that her stomach is emptying properly and quickly enough. We did express concern about how it is tough for her to swallow liquids now. She will drink, wait a second, and retch which makes her spit up whatever she just drank. This is new for her. The GI team did confirm that her nissen is wrapped tight, so there is no reflux back into her esophagus. However, the test does show that when Ella swallows, a bit of fluid is getting caught in the lowest part of her esophagus right before her nissen. The emptying into her nissen is slow and could be the reason she is having a tough time. If it does not get better over the next 1-2 months, we might have to consider a procedure where they would go down her esophagus and try to balloon open the area a bit more to help her. Only time will tell…

We had the Care Conference this morning. It was determined that they are going to continue to modify Ella’s Captopril and Aldactazide, to achieve the optimal balance of blood pressure medicine and diuretic. This is not something that requires hospitalization at this time, since she has been stable for several days.

We made huge progress with feeding over the last 2 days. She is tolerating 100ccs of volume via bolus. The challenge has been the density of the food. Today we tried 65ccs of formula to 35 ccs of Pedialyte and that seemed to work well. Tomorrow, we will try to increase the density. This is also something that we could do at home.

So at the Care Conference, we discussed what is truly keeping us here. Josh and I stressed that we want them to figure out her tachycardia. We want to know why her heart rate is so high, even when she is at rest. As I type this, she is fast asleep and her heart rate is 145. Her baseline would be 105-120. Throughout the day, it was sitting between 175-195 when she was awake. In the past several days, it would be high, moderate and low at times (seemed to be all over the place). Today seemed the worst because it was simply high all day.

We want them to figure this part out. So they ordered an EKG again (she had one in early August). We will get the results tomorrow. Also, they wanted to see if the heart rate was related to being too dry (fluid issue). So they gave her 2 bolus feeds of Pedialyte with a sodium chloride additive this afternoon. They wanted to note her heart rate before, during and after. If her heart rate became lower, then maybe she was just a little bit too dry. Well, the test did not show those types of results. Her heart rate was unchanged.

They increased her Captopril again to 1.5mg per kilo. They will be looking at the diuretics tomorrow to see if they want to decrease them or leave them the same.

The docs ordered blood labs this morning. For the second day in a row, they could not draw blood. Both times, it was someone that typically gets Ella’s veins on the first try. In other words, they are the best at drawing labs and yet, each of them tried twice and could not get Ella’s veins to cooperate.

So at the Care Conference, we stressed that these experiences are really bad for Ella. She is getting to the point where she will instantly cry if a stranger comes to her bedside and makes a motion to simply touch her. It is a bit frustrating because we tried to advocate before surgery that they try putting in a picc line, and we were dismissed. But daily pokes are torture for her; I’m actually surprised that she has lasted this long. I think we made enough of a point so they will not just continue to order labs every single day. I can’t wait to go home so she can have a good break from this scenery.

The OT department brought us a chair for Ella to sit up in. Thank goodness – – she has been laying in the crib SO much. It is the same kind of chair that her PT in Florida let us borrow. She sat in it for awhile and played. It was cute. They told us that we should try giving her diluted juice again and to see if she will take any food.

We tried her favorite, apples. Unfortunately since it has been 4 months since she had anything by mouth, she wasn’t keen on the idea of eating. It’s such a bummer because it seems like she has an oral aversion now. When she was released from the NICU in Florida, we worked really hard at home each day to get her to eat foods. Back then, it was painful to lovingly push through her oral aversions and get her to like eating. To see her today not wanting to eat at all was a bit discouraging; it makes it seem like all the progress from before didn’t do much good. I’m sure it will help in the long run, but it was tough to see her have so much regression.

We know that everything is in His hands. He is in control over every detail in our lives, including Ella’s fast heart rate and He knows the answers to all her current health issues. We’re hopeful that discharge from the hospital might be soon, but trust in His perfect timing.

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

Posted (Tina) in All Posts on September-17-2008

Yes, I’m excited because maybe sleep at night is coming sooner versus later.

Last night, we tried reducing the volume for Ella significantly. Instead of trying to push 320ccs over 8 hours, we tried 240ccs over 6 hours. Unfortunately, our test was not successful. Ella let us know every 30 to 60 minutes that her belly was hurting and this was not the ticket.

I began to think more and more that it is the density of the food. The Peptamen Jr is 30 calories per ounce whereas the Alimentum is 26 calories per ounce (regular formula is 20 calories per ounce). Because the food is so rich, it has less free fluid. When we use a food pump and push it into Ella’s belly, it takes so much longer for her belly to empty and process the rich food. Yet, we keep pumping it in at a regular rate. This causes lots of discomfort in her belly which is why she complains all night.

So we also noticed that when we feed her quicker during the day and stop to give breaks, her belly seems to do better. Today, I asked about thinning out her formula and told them that I wanted to try bolus feeding. Praise God – – she tolerated bolus feeds today like a champ. We diluted the formula using a 1:1 ratio of Pedalyte and Peptamen Jr. We started with 2 bolus feeds of 50ccs, then went to 80ccs for a few feeds and ended with a 110ccs, just to make up some fluids from last night’s debacle.

Her daily goal is 500ccs during the day and 180 at night. Ideally during the day, 100ccs via bolus with 100% density of formula. So, we are not at the 100% density, but we can work on that at home slowly. I’m just excited because we made HUGE strides today with feeding. It was nice to not feel like I was torturing her.

We’re going to try giving her a bolus feed before we go to bed tonight and one at 5am. Although this is not an ideal schedule for home, we want to see if tonight goes better. Therefore, the excitement at the thought of shut eye!

We had a bad experience this morning with the blood draw. It was with a person that is usually successful with Ella on the first try. Yet it lasted 15 minutes and they tried twice in 2 different locations without success. That is the worst: getting Ella all worked up for so long and not getting what you need. We’re praying that tomorrow morning we are successful.

The docs discontinued the Predisolone (steroid) today. After surgery, she had a 5 day regimen and ever since, they have slowly been weaning it. They opted to increase her Captopril to 1.25mg per kilo and monitor her blood pressures overnight. The max dosage for her age is 2.0mg per kilo, so they still have room to increase it if necessary. When they increase the dosage of Captopril, it lessens the need for a diuretic. So, we will see what the Aldatazide does over the coming days too.

Her heart rate is not only remaining high, but it is all over the place. Sometimes it is higher, sometimes lower. That is not normal for her, so they have ordered an EKG.

Ella is scheduled for an upper GI tomorrow morning at 10am. This will look at her nissen and gastric function since the surgery. I will be interested to see the difference post-surgery.

Tomorrow at 11am, we have a Care Conference. This is where they bring all the doctors and professionals from all the disciplines (pulmonolgy docs, occupational therapy, physical therapy, case management, etc.) to discuss the overall goals for the remainder of the hospital stay as well as the items that can be completed upon discharge at home. We’re hoping it provides a better picture of how much longer we will be here.

Ella not only did well with feeds today, but she was happy and behaved like herself. Physical therapy came by and we had a nice session where Ella sat up with support. She was smiling and behaving like she felt great. It is SO nice to see that coming from her. I feel like it has been a long time.

We sense that God is beginning to answer our prayers about some of the other variables in our life. We’re still waiting and being patient, but things are starting to move in a direction and becoming more evident. As things crystallize, we will share on the blog. All we know is that it has felt like we have prayed and prayed for weeks for His will to be revealed in our lives…and we’re excited to share that things are now coming to fruition. His timing is so perfect. Much better than ours.

As we rest in Him tonight and hope for sleep, our excitement overflows for everything He is doing in our lives, including the amazing medical treatment He has provided for Ella.

Psalm 59:16-17 (Today’s New International Version)
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.

You are my strength, I sing praise to you;
you, God, are my fortress,
my God on whom I can rely.

Posted (Tina) in All Posts on September-16-2008

Ella had yet another rough night. After last night, I emphasized to the doctors that we need to change the night time feeding schedule. I cannot be up every hour with Ella each night. At first, I thought maybe the tummy was just tight from her surgery and needed some stretching out. So, I tried to be strong and push through the sleepless nights. But now, I’m getting so worn out.

I think they are trying to be too aggressive with her food and weight goals. Do they realize that she is a CDH baby and has a tendency towards “failure to thrive”? In other words, these goals might be reasonable for a healthy baby that needs to catch up, but not for a fluid restricted Bun.

Tonight we are going to try a lot less food and see what happens. I’m hoping for a restful night of sleep. Since we knew we were going to run less food tonight, we increased her daily feed to 90ccs over an hour for each feed. That seemed to go well. Each time I vented her, no air would come out. There was one exception. She was doing great and all of a sudden, started retching so hard. She was having trouble catching her breath and then part of the formula came up her throat. Then, she was trying to breathe but not inhale it. She got so scared. You can just tell when she gives that loud, deep cry. It is so hard to hear those cries. They are genuine and indicate that she is really scared. Of course, all of this happened while she was having the echocardiogram completed. Clearly, the echo tech was nervous and scared at Ella’s reaction.

Overall, Ella’s heart rate is still too high. A few times, it dipped down into lower numbers when she was sleeping. But overall, her heart seems to be working much harder than it should.

When they did rounds this morning, I got a peek at the chest xray from yesterday (BUN was 14). It looked pretty good for Ella and indicates that she does not have a lot of fluid on board. And today, her BUN was 16, so the increased Captopril and Aldatazide seem to be doing their job. Yet, they discussed still fine tuning her regimen between increased Captopril and Aldatazide. We will see in the coming days.

For once, they also discussed thinking about discharge as far as trying to transition the mind set to more of the home regimen. What are we going to do with Ella at home – for feeds, meds, everything? And what do they need to do when she is in the hospital versus outpatient? We have been here 3+weeks. It will be a glorious day to go home.

We’re continuing to rely on the Lord for His timing and trying to be patient. Not just with Ella’s progression of care, but in all things. We feel like there are so many things going on in our lives and yet in the midst of the noise, He beckons for us to stop, get on our knees and hand over our lives to Him. He wants the best for us and therefore, we need to seek Him to ensure that we don’t miss out on any blessings that He has for us.

Continuing to rely on our Lord through the exhaustion. Thank God for where He has us and the progress we’ve made. Here is Ella one year ago today:

Deuteronomy 4:29-31 (The Message)
But even there, if you seek God, your God, you’ll be able to find him if you’re serious, looking for him with your whole heart and soul. When troubles come and all these awful things happen to you, in future days you will come back to God, your God, and listen obediently to what he says. God, your God, is above all a compassionate God. In the end he will not abandon you, he won’t bring you to ruin, he won’t forget the covenant with your ancestors which he swore to them.

Posted (Tina) in All Posts on September-15-2008

Ella was up every hour last night. It seemed that the food was bothering her. This made for little sleep. I tried venting her. Two of the times, it seemed to help. The other times, she just seemed uncomfortable.

We think that the discomfort throughout the night is because her tummy is not getting a break before the continuous feeds start overnight. Since each of her 5 feeds during the day is taking so long to complete, we are running into the nightly feed without a break.

On that note, we tried shortening the time frame of the feeds today. We fed 80ccs over one hour (instead of an hour and a half). This left more time between feeds. She seemed to do better. Tonight will be telling.

This morning, Ella was not looking great. It seemed like she was showing all the signs of being fluid overloaded. While she was sleeping, her heart rate was 150. Her labs came back with a BUN of 14. They took a chest xray and told me that it did not look that bad (not sure what that really means). As they did rounds, they were trying to decide whether to increase her diuretics or the Captopril. Since her chest xray did not look too bad, they opted to keep the diuretic dose the same (aldactazide) and increase the Captopril. The nurse will be monitoring her blood pressures throughout the night to make sure that they do not dip too low.

We are noticing that her heart rate still seems to high…and it doesn’t seem to make a difference if she is too wet or too dry. We want them to figure that out before we go home. This morning, they talked about getting a follow-up echocardiogram tomorrow. They want to see how her heart is functioning since she has been on the Captopril.

This evening, she seemed more comfortable. And as she is sleeping, her heart rate has dipped down to 110 – 125, which is closer to her baseline. That is really nice to see those types of numbers. We’re hoping that the increase in Captopril is the answer.

Even if it is the answer, we still feel like we will be here longer while they test out the waters with each change. Once they think they have it figured out, we will want to sit and remain stable for 2-3 days to make sure that it is not a fake honeymoon period. We would rather invest the time now and not return to the hospital for a long time.

As the sun sets on this Monday, we reflect on all He has done for us. We feel so blessed to have our baby girl in our lives.

Psalm 95:2
Let us come to him with thanksgiving.
Let us sing psalms of praise to him.

Posted (Tina) in All Posts on September-14-2008

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:

God’s loyal love couldn’t have run out,
his merciful love couldn’t have dried up.
They’re created new every morning.
How great your faithfulness!
I’m sticking with God (I say it over and over).
He’s all I’ve got left.

God proves to be good to the man who passionately waits,
to the woman who diligently seeks.
It’s a good thing to quietly hope,
quietly hope for help from God.
It’s a good thing when you’re young
to stick it out through the hard times.

When life is heavy and hard to take,
go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
Wait for hope to appear.
Don’t run from trouble. Take it full-face.
The “worst” is never the worst.

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.

Posted (jooosh) in All Posts on September-13-2008

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.

Posted (Tina) in All Posts on September-12-2008

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.

Posted (Tina) in All Posts on September-11-2008

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.