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.

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.

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.

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.

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.

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.

At this moment, Tina and I are in total shock. God is so amazingly awesome! I mean, we’ve seen many miracles along this journey and it’s not that we’ve had any doubt in our Heavenly Father. Ella is living proof of His miraculous ways every day!!! What always blows my mind is how God orchestrates our lives. When we surrender our will back to Him in obedience, we can trust that He will work out all the details.

The last ten days have been filled with huge life changing events. Tina secured an incredible job opportunity that came to her last July (mind you, one that she didn’t originally pursue). We’re moving into the home we’ve been trying to rent for the last four months because our current residence rented in less than a week (hello clear direction from God)! And, as of tonight, we have been blessed to find the most FANTASTIC individual to be a part of our lives to help with Ella.

We have been praying for wisdom and discernment in finding the right nanny. There was no way Tina could perform her new job, and for me to continue mine without some help. We’ve not felt any prompting from God that I’m supposed to quit, and we’re confident that He didn’t provide this opportunity for Tina just so she could turn it down. This is where we had to trust Him because we didn’t know how He was going to work this out. We just knew that it was a major piece that had to fall into place.

And this particular decision is a huge one for us because we will be trusting this individual with the care of our precious Ella, something that we haven’t felt comfortable doing with anyone except the NICU nurses from Florida (which is why our last “date night” was when nurse Janet came out to visit over two months ago).

One option we were considering was an au pair, but after extensive research, we decided against this route due to Ella’s complexity and the likely possibility of a language barrier. This did push us towards having a live-in nanny though, which works because we’ll have more space in the house we’re moving back into.

Tina has been interviewing nannies over phone, some local and some out of state, and we asked a couple candidates if they wouldn’t mind coming to the hospital so we could interview them. We interviewed one yesterday, and based on her experience, she sounded like a possible match. But our gut and spirit quickly confirmed that she wasn’t a right fit for us.

The nanny that came to interview today, her name is Kelly, started out on the right foot before we had even met her in person. While talking to her on the phone, Tina had asked “What is your ideal situation for being a nanny?”. Tina was expecting to hear her say something about the hours she wanted to work, details related to the job, and maybe the possible compensation. But instead, Kelly answered this way: “Well, I realize this might sound superficial, but I just want to do what God wants me to do. I don’t really have many expectations going into this”. Ok…that was the right answer. Heck…that’s the right answer to any decision in life!!

With that foundation, we were excited to meet her. She came to the hospital this afternoon around 1pm and didn’t leave ’till 8 o’ clock! One of the first things we did when she arrived was to pray together, and ask the Spirit to give wisdom and discernment to all parties. And wow….did He ever! From the moment she came in and we prayed, I knew that she was the one!!!

She shared her story and where she’s coming from and we gave some more details about Ella and the complexities of her care. Kelly responded so well to Ella, and her attitude about taking care of her was just amazing.

Tina was going to go run some errands so Kelly went along with her. This gave them a great opportunity to connect for a couple hours, plus Kelly was able to see where she’d be living with us.

Once they returned to the hospital, we had a great time continuing our conversation and getting to know each other better. The Spirit continually confirmed the decision to have her be our nanny, and I could barely contain my joy. Tina felt the same way, but I think she was in such shock.

Kelly’s spirit is so phenomenal and her attitude about the entire opportunity really confirmed things in my mind. We talked more about the details for hours and then also amenities we’d be providing. Tina even jokingly indicated that we don’t use the cheap toilet paper, only Charmin. I confirmed that anything else would have been a deal breaker for me personally, and Kelly concurred. =)

At this point it’s just a matter of timing. We asked Kelly about her availability and she indicated that she could start working right away. She also confirmed the sooner the better so that she could really work with Tina to get to know Ella real well before Tina starts work. With that in mind, she’ll probably be starting shortly after we’re discharged from the hospital. This should help a lot considering all we have to do in preparing for the move.

Oh..yeah…how’s Ella doing? =) Ella had a good day overall. Her clinical behavior was great. She’s acting so much like the happy Ella we know and love. She did have some problems with secretions overnight which caused her to retch every hour between midnight and 5am. I was on Ella duty and with my lack of sleep the previous night, I was one cranky bear by 5am. Tina stepped up, took over, and told me to go to bed. Thank God for my amazing wife. I really don’t know how she does it.

Thanks to all of you who continue to pray for us. There are so many other side stories that we experience that don’t get shared on the blog where the hand of God is totally visible.

These moments continually confirm that phrase that God put on my heart back in Gainesville: ‘There are no accidents, only God ordained moments.’

Happy Birthday to Ella’s Daddy!

Ella was up every hour again last night. We seem to be having a problem with her retching. She will be fast asleep and then she just starts retching. I can’t imagine being fast asleep and waking up with a feeling of nausea. So although I am worn out each night, I just feel bad for the Bun. I get out of bed and try to console her and help her get past it.

The docs keep saying that it is just normal and the nissen should stretch out in 4-6 weeks. I understand that it is normal for her to retch, but to wake up from deep sleep and retch throughout the night? I don’t buy that explanation.

During the day, Ella seemed happy and was smiling for me. It is so good to see that from her.

The sildenafil was decreased again today. I think they are testing to see if they can discontinue the sildenafil completely over the next few days.

I am convinced that the sildenafil is still playing a part in her overall care. Today for the first time, her saturations were lower overall throughout the day. The only time they were 99-100 was when she was fast asleep. Otherwise, they seem to fluctuate between 92-96. This is not a bad saturation, but I wanted the docs to know that this is a marked difference from a few days ago. Up to this point, her heart has been racing faster but her saturations have not been lower. Plus, her breaths per minute were also high today, even 60-70 bpm when she was sleeping!

When the docs checked in later, they agreed that maybe the sildenafil is still having a positive impact on her. They want to watch her overnight and might end up adjusting the dosage back upward. Along with me, they were noting that her saturation and heart rate were all over the place. Sometimes the variable saturations can be a sign of pulmonary hypertension, so they want to watch it carefully.

Discharge from the hospital is being discussed for Wednesday. At this point, we really want it to be Wednesday because we are not only getting tired of living at the hospital, but we have so much to do to prepare for the move. We need to be home. But, the worst is knowing that we don’t feel that great about where Ella is at these days. They are still trying to figure out the combination of meds that is most optimal for her. And even tonight, she is breathing fast, her heart rate is high and she doesn’t seem that great. The hard part is that before, we could just dry her out and leave her in a dried state; it kept her happy and clinically looking well. Yet ever since we went off the major diurectics, and added other meds like Captopril, it has gained her a lot in some areas but now we have just created new issues.

Ella is scheduled for a follow-up swallow study tomorrow. This should give a better idea of what Ella can and cannot eat by mouth. We’re interested to see if the results are the same or different than the last study, which was completed before her most recent surgery. The results should help us when we initiate therapy sessions in the coming weeks.

Please pray that Ella’s increased heart rate will come into a more acceptable range and that her retching will be minimized. We hope that she will sleep well tonight so that we can catch up on our zzzs too.

Thank you for faithfully joining us in our journey.

Galatians 6:2 (NIV)
Carry each other’s burdens, and in this way you will fulfill the law of Christ.

Ella was up again all night, each hour.

The retching overnight is disconcerting. I expect to have it occur during the day sometimes and also with feeding. However, I don’t expect her to wake up from sleep by retching. This has been tough on all of us. Last night, Josh woke up around 4am and offered to take over. He took care of her till around 7am, and then I let him go back to sleep for another 1.5 hours until he went to work. Tonight, Josh is working late and he is going to go to our home and have a solid night’s sleep in our bed. We need to check on our cats. The poor felines. Every few days when we make it home to pick up mail and do laundry, the cats are so lonely. Hopefully, it won’t be too much longer before we are home.

On that note, I think there is a slim chance that it will be tomorrow. When the docs rounded this morning, I gave them the overnight report. Her heart rate is not changed – – it is still too high. Weaning the sildenafil has not changed that for Ella. Also, I made sure that they knew about Ella’s oxygenation. Her color did not look as good and her saturations are all over the place. One minute she is sitting at 100, then low 90s and if she gets upset at all, she desaturates within a second or two. She wasn’t doing that on the higher dose of sildenafil. They agreed that it might be the weaning of that medicine that is causing issue with the saturations and the cause for her dusky color since those symptoms are typical for pulmonary hypertension. To confirm the status of her pulmonary hypertension, they ordered an echo.

The echo did not get completed today which is a bummer. The cardiology team was already booked for the day. And they don’t want to make any changes to the sildenafil until they take a look at what is going on with her heart. So today went by without much changes to her medicines….bummer (makes it feel like there was not much progress). Supposedly, we are on the morning schedule for an echocardiogram.

Also, we are scheduled for labs at 8am to see what her electrolytes look like. Fortunately, since they were unable to draw labs last Wed and Thurs, they gave us a break from blood draws. This was a wise move to let Ella have a break and give her veins time to recuperate. I’m hopeful that tomorrow will go better and they can get the labs they need.

Ella took 90ccs of Peptamen Jr and 10ccs of Pedialyte each feed today. It did seem to cause her a bit of grief, so we will likely hold that density of food throughout tomorrow too. I want to push her to get up to the full strength of 100ccs, but am prepared and realize that might take a while.

The swallow study was this afternoon. It wasn’t much of a study – she only took 8 swallows. I offered her the bottle (apple juice mixed with barium). She took to the bottle, took down several swigs, stopped and started retching. She had such a bad spell of retching (sometimes it is just a few retches, but this went on for several minutes). I had to increase her oxygen to 2 liters and wait a long time to calm her down and try again. After that really bad experience, she was not about to take anything by mouth. I tried purees and by that point, she would take her hand and move mine out of the way. She was so upset.

It was a bummer because it doesn’t give them much to analyze. The good news is that out of the 8 swallows that they did view, she did not have aspiration, deep laryngeal penetration, or nasopharyngeal reflux (through the nose sinuses). However, she does have pooling at the base of her esophagus right before the tightened nissen. We think this is why she is retching so much more post-surgery.

The surgery and GI teams state that retching is normal for a redo-nissen. They anticipate that her nissen will naturally loosen in 4-6 weeks post surgery. Well, tomorrow is 3 weeks and it doesn’t seem that loose. She is retching a lot and hard; pretty much like she did before surgery. We’re hoping that her GI doc will make the time to visit us in-patient so we can discuss our concerns.

Once we were done with the swallow study, we met Grandpa and went outside for some fresh air. It is only the second time that Ella has been out of her room and experienced the sunshine.

Please pray for Ella, that the doctors will be given wisdom and discernment to figure out the best set of medicines for her. Pray for her retching and feeding therapy, that it will minimize with each passing day. Also, that she will be in a stable place soon so that we can take her home.

Please pray for us and our sanity. We only have 2.5 weeks until our move date. We have been stuck at the hospital and not able to start packing for our move. It is around the corner and we are just not sure how it will all get done. We praise Him for placing friends in our lives that are willing to help during the move, but are still stressed about how all of it will get done timely.

Finally, please lift up our new nanny, Kelly, in prayer. We are so blessed to have her come into our lives. Pray that the Lord will prepare her to take care of Ella and that she will be ready spiritually and emotionally for this extremely important task. Pray that all of us can bless each other as we live together with Ella and care for her.

One thing is for sure, amongst all the strife in her daily life, my daughter still takes the time to smile at me…and that means so much. That is what really matters and I’m so glad that she takes the time to remind me each day and keep my priorities straight.

Hebrews 10:35-36 (NLT)
So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.

Going into the PICU (Pediatric Intensive Care Unit). Yeah…we should know better with Ella. Things don’t always go according to plan.

Last night was rough again. She was retching every 45 mins or so.

This morning, she seemed to be getting worse. Her heart rate was still high, varying from 165-190, while she was just laying in her crib. And like yesterday, her saturations were not great.

When she was asleep for her morning nap, her saturation was 92 with a heart rate of 180 and breaths per minute at 78. I have been trying to tell the docs since yesterday that she doesn’t look as good, but I wanted the nurse to communicate the same story. So, I made sure to have the nurse assess her in that moment. The nurse agreed with me, reported back to the docs and even suggested that we increase her oxygen to 1.5 liters, since Ella started saturating in the high 80s consistently.

The echo was completed this morning at 9am. I could tell based on small talk with the technician that her echo did not look great. He even stopped during the test and asked the nurse for her latest blood pressure. I have never seen that done before. My gut told me that something was not right.

When they did rounds, I did my best to articulate my concerns. I told them that the sildenafil had to be making a difference, just based on her behavior. They didn’t seem overly concerned and mentioned that they would be back to discuss the plan once they read the results from the echo.

About 1.5 hours later, a somber pulmonologist walked into my room. It was almost like his tail was tucked between his legs. He had the unfortunate task of telling me that he felt that Ella needed to be moved to the Pediatric Intensive Care Unit. The echo shows that she does need her original dose of sildenafil. In addition, they saw some things on the echo that make them question how her heart is functioning. Although they did not go into detail, you could tell that whatever they saw on the echo made them very nervous.

Also, Dr. Abman talked about a cardiac catheter three weeks ago when she had surgery. We always knew it would be a possibility. Now that they have tried playing with the sildenafil and captopril and things have not resolved with just meds, they want to go ahead and perform this invasive procedure.

As a side note, Dr. Abman is traveling today and was in touch with his team to approve this decision. Even though he was traveling in Canada today, he made sure to call the room and talk to me, to see if we had any concerns.

The docs tried to see if the cardiology team could do the heart catheter procedure today. The sooner, the better so her condition can be treated. Once they realized her history and that she is complicated, they decided to wait until Friday. This way, they can check her history and make sure that they know what they are getting into with her anatomy. They also suspect that her vessels in her heart might be narrowed, which might require ballooning them out. This way, they can also schedule a cardiac anesthesiologist and make sure they have the proper staff to handle whatever they might encounter. We have not been given a specific time for the procedure yet.

In the meantime, we are hanging out in the PICU. The room has no privacy (glass walls), is smaller, has a toilet area with a curtain but no shower. Also, you cannot eat in the PICU rooms. Definitely not the living conditions that we had upstairs. This just makes all of it a bit more challenging in the days ahead.

So we are bummed that the heart catheter test is not until Friday. This means 2 days of waiting around in the PICU before we have any information on what will help the Bun. The good news is that they are still determined to figure out what is ailing Ella. Once this test is done, Dr. Abman and his team should have all the information that they need to make an educated decision about Ella’s care.

Please pray for Ella’s heart and her comfort as we celebrate her 14 months of life today. As always, we’re trusting Him through another bump in the road. May He be glorified through Ella’s circumstances, as we continue to share and be a witness to those around us.

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.