Everyone who’s ever gotten a good nights sleep in a hospital raise your hand…anyone…anyone…yeah, didn’t think so.

So let’s be totally exhausted and then NOT get a good nights rest. Unfortunately for us, this is playing with a bit of fire, because if our immune systems get compromised and we get sick, we risk getting Ella sick which could be very bad.

We have been really spoiled after seeing her look the way she did last week. If we think about it, her current stats may have looked OK a few weeks ago, but now that we’ve seen Ella look as good as she has, we know better.

At this moment, Ella is stable but she isn’t even close to looking as good as she did when she was discharged. She is very fussy, and inconsolable. This is hard to see and our emotions are so raw that they’re hard to control. There is nothing familiar about this place and tears seem to flow pretty easy for both of us.* We can’t even really take time to recharge because we cannot trust to leave Ella alone in this part of the hospital. In the NICU she had 24/7 care in a secure area, and from a core team of nurses that knew (and loved) her.

A theme that has been a challenge while being at the hospital is the breakdown of communication between parties. It felt like we were finally getting the hang of things in the NICU, but now we’re having to start all over again with a new team. What blows my mind is communication between the NICU and the pediatric area is non-existent. We are still under the care of Dr. Kays mind you, but now there’s a different way of doing things.

We had spoke to Dr. Kays briefly yesterday at about 1:30pm, but our conversation was interrupted by a phone call he had to take and we didn’t hear back from him. As of 10am this morning, nothing had been changed to improve Ella’s condition. This was pretty frustrating and we didn’t know what the game plan was.

We expressed this frustration to the ARNP (Advanced Registered Nurse Practitioner) and she really did well to listen. She communicated this to Kays, and he came by in the afternoon to talk to us. Of course, when he came by, Ella was sleeping and behaving herself, so he didn’t see how she had looked clinically when she was having an episode.

After expressing our concerns to him, he made the call to take advantage of that painful IV that Ella received yesterday and give her some Lasix. We were good with this, because in the past it had always helped pull our girl out of these spirals. Well, the bummer news is that we did not see Ella respond to the Laisx like she has in the past, and she still looks a little puffy.

Also, Dr. Kays ordered an increase in her Bumex to 1mg twice a day. He’s taking this direction because her blood work looked ok except for her BUN. Kays usually likes to see this number around 24, but Ella was coming in around 12. A lower number indicates more fluid in the body, so giving her more diuretics makes sense.

So far though, Ella continued to have multiple respiratory distress episodes this evening, all of them requiring blow by oxygen just to get her to calm down.

The bottom line: We wish we could be admitted back to the NICU 3 where the doctors there really know our girl, but hospital policy prevents this. This really stinks, and I would understand it if Ella’s mystery problem had been resolved and we were coming back 2 months later because she was sick with something else.

Ella also had an echo cardiogram today and it didn’t show any signs of shunting or pulmonary hypertension. This is good, but it was taken during the one time she was asleep today and not under major duress.

At this point we just hope Ella sleeps well tonight so we can try and do the same. She was given some Tylenol and something for possible gas pains so at this moment she is passed out.

Tina and I are both totally exhausted and we’re fading right now…please continue to pray for the three of us and for Ella to make forward progress.

* In the middle of writing this post (it was written over a span of 5 hours this evening), a person from housekeeping came in to clean the bed space next to us. She asked us how long we’ve been here, and we shared some of our story with her. She started to get a bit emotional, and I felt prompted to go give her a hug. I then expressed how awesome and faithful our Lord has been, seeing us through this entire time. We talked back and forth for awhile (ok…maybe I did most of the talking), and we ended up praying together. God used this time to bless us and send His peace. Our Heavenly Father new exactly what we needed, and Tina and I were so encouraged by this. This affirms a saying that the Lord has put on my heart over the last couple days: There are no accidents, only God ordained moments.

Thank you Jesus for ordaining this moment.

Everyone who’s ever gotten a good nights sleep in a hospital raise your hand…anyone…anyone…yeah, didn’t think so.

So let’s be totally exhausted and then NOT get a good nights rest. Unfortunately for us, this is playing with a bit of fire, because if our immune systems get compromised and we get sick, we risk getting Ella sick which could be very bad.

We have been really spoiled after seeing her look the way she did last week. If we think about it, her current stats may have looked OK a few weeks ago, but now that we’ve seen Ella look as good as she has, we know better.

At this moment, Ella is stable but she isn’t even close to looking as good as she did when she was discharged. She is very fussy, and inconsolable. This is hard to see and our emotions are so raw that they’re hard to control. There is nothing familiar about this place and tears seem to flow pretty easy for both of us.* We can’t even really take time to recharge because we cannot trust to leave Ella alone in this part of the hospital. In the NICU she had 24/7 care in a secure area, and from a core team of nurses that knew (and loved) her.

A theme that has been a challenge while being at the hospital is the breakdown of communication between parties. It felt like we were finally getting the hang of things in the NICU, but now we’re having to start all over again with a new team. What blows my mind is communication between the NICU and the pediatric area is non-existent. We are still under the care of Dr. Kays mind you, but now there’s a different way of doing things.

We had spoke to Dr. Kays briefly yesterday at about 1:30pm, but our conversation was interrupted by a phone call he had to take and we didn’t hear back from him. As of 10am this morning, nothing had been changed to improve Ella’s condition. This was pretty frustrating and we didn’t know what the game plan was.

We expressed this frustration to the ARNP (Advanced Registered Nurse Practitioner) and she really did well to listen. She communicated this to Kays, and he came by in the afternoon to talk to us. Of course, when he came by, Ella was sleeping and behaving herself, so he didn’t see how she had looked clinically when she was having an episode.

After expressing our concerns to him, he made the call to take advantage of that painful IV that Ella received yesterday and give her some Lasix. We were good with this, because in the past it had always helped pull our girl out of these spirals. Well, the bummer news is that we did not see Ella respond to the Laisx like she has in the past, and she still looks a little puffy.

Also, Dr. Kays ordered an increase in her Bumex to 1mg twice a day. He’s taking this direction because her blood work looked ok except for her BUN. Kays usually likes to see this number around 24, but Ella was coming in around 12. A lower number indicates more fluid in the body, so giving her more diuretics makes sense.

So far though, Ella continued to have multiple respiratory distress episodes this evening, all of them requiring blow by oxygen just to get her to calm down.

The bottom line: We wish we could be admitted back to the NICU 3 where the doctors there really know our girl, but hospital policy prevents this. This really stinks, and I would understand it if Ella’s mystery problem had been resolved and we were coming back 2 months later because she was sick with something else.

Ella also had an echo cardiogram today and it didn’t show any signs of shunting or pulmonary hypertension. This is good, but it was taken during the one time she was asleep today and not under major duress.

At this point we just hope Ella sleeps well tonight so we can try and do the same. She was given some Tylenol and something for possible gas pains so at this moment she is passed out.

Tina and I are both totally exhausted and we’re fading right now…please continue to pray for the three of us and for Ella to make forward progress.

* In the middle of writing this post (it was written over a span of 5 hours this evening), a person from housekeeping came in to clean the bed space next to us. She asked us how long we’ve been here, and we shared some of our story with her. She started to get a bit emotional, and I felt prompted to go give her a hug. I then expressed how awesome and faithful our Lord has been, seeing us through this entire time. We talked back and forth for awhile (ok…maybe I did most of the talking), and we ended up praying together. God used this time to bless us and send His peace. Our Heavenly Father new exactly what we needed, and Tina and I were so encouraged by this. This affirms a saying that the Lord has put on my heart over the last couple days: There are no accidents, only God ordained moments.

Thank you Jesus for ordaining this moment.

Wow, today was rough.

Last night, we continued to notice that Ella was having a hard time breathing. We could tell because her saturations were in the low to mid 90s and her heart rate was between 155 and 180 while she was sleeping. When she left the NICU last week, her saturations were 100 and her resting heart rate was 115 and even lower. When you looked at her, you could see that her breathing was more labored. When we thought about it harder, it explained a lot of her fussy behavior the past 2 days. Something told us that things were not right and heading in a direction that could be bad.

At 6:30am, I decided to call the NICU and talk to Nurse Michelle. She agreed that didn’t sound right and offered to come by our house to take a look at Ella. Plus, it gave her an excuse to see her and give her a squeeze! Once she saw her in person, she agreed that this was not the same baby that we took home last week. By that time, we had increased her oxygen to 1 liter.

As soon as the office for the pediatrician opened, we were on the phone with Dr. Sarantos. She opted to call Dr.Kays to see what he wanted to do, especially because she is just getting to know Ella. Dr. Kays decided it would be best if we went to the ER and had him paged.

All was moving along fine in the ER. They placed us in a room, away from the public waiting area and we had a chest x-ray. Ella did not like it but we managed to get through it. Dr. Kays was also looking for her blood lab work. If you remember, she just had her blood drawn yesterday at Dr. Sarantos’s office, but somehow there was a miscommunication and he ordered another set from the ER. We were told that a NICU nurse would be coming to do the prick since Ella is a tough one.

A few minutes later, two ER nurses showed up to draw the blood. They told us that the NICU was contacted but there was not a nurse available (we later found out that wasn’t true). Josh decided to stay outside the door and make a couple of calls. I knew Ella would not do well, so I tried to warn the nurses. They began to look for an area to get the line in. Then, I realized that they wanted to do an IV line, which has always been a tremendous challenge on Ella. I warned them that she was in the ER for respiratory distress and was already on 1 liter, but they should increase her oxygen during this time because she will likely get air starved.

The next 10 minutes were the longest 10 minutes of my life. The nurses both blew me off and did not heed anything I told them. Once they started, they were not having success and with each further prick, Ella was getting more and more upset and not able to catch her breath. I was helping to console her and hold her down (she gets so mad that she will throw her arms and legs around).

When my daughter was a bluish/purple color for an extended amount of time, could not catch her breath and had that look of fear in her eyes, it was so tough for me. I continued to vocalize that she needed more oxygen support to help her and the nurses completely ignored my input. This was the most horrifying experience for me. When I looked down the next time, Ella’s mouth was full of blood. I had no idea where or how it got there. She was so mad and fighting me so hard. I was having to hold her down, keep the limited oxygen she had in her nose and try to keep her from inadvertently scratching herself. I started to cry and raised my voice louder to the nurses to let them know that we needed to take a quick break so Ella could catch her breath. It is not good for her to go extended periods of time with limited oxygen supply. They patronized me and told me that “all babies get upset”. I was in tears when Josh burst through the door and asked, “What is going on here?” He noted everything and immediately ran to the oxygen meter on the wall and turned it up (sometimes it’s easier to ask for forgiveness than permission), ran back out in the hallway and yelled out that we needed help in the form of blow-by oxygen. Thank the good Lord that Josh walked in when he did.

As the nurses were leaving the room, I had to tell them my thoughts. Through my tears, I thanked them for the job they perform each day, but told them that I was really offended that they did not listen to me. As much as I respect their experience and position, I know my daughter way better than they do and that they should have listened to me. I felt like they completely blew me off.

Once we were able to calm Ella down, which took a solid 15 minutes of 3 liters of oxygen via the nose cannula plus blow-by oxygen, we realized that she scratched her nose, ears and lips (this is why there was blood in her mouth). Later the same nurse walked in while we were still stabilizing Ella and went to turn down the oxygen. Josh told her firmly to not touch the oxygen. She started to explain and he simply asked her to leave.

To top it off, we found out later that Dr.Kays did not even order the IV; he just wanted the blood drawn. So, all of it was unnecessary. Those 10 minutes are forever etched on my memory. I have never experienced anything so horrific. My daughter was not just crying because she was mad; she was being air-starved and had a look of fear on her face. The blood in her mouth did not help, since I was not sure of the cause while the incident was occurring. It was just a scary moment for me.

Josh and I have experienced Ella being air-starved before, but it has always been within the controlled environment of the NICU. I thought that was bad enough to experience it in that setting because it is so hard on Ella. Today has to have topped it off as the hardest experience with Ella. I couldn’t help but cry hard. I love my baby girl so much and they literally just tortured her for an unnecessary reason.

Once they admitted us to the hospital, we ended up on the fourth floor in the pediatric floor. Between the ER and the pediatric unit, everyone that was seeing Ella had never seen her before. They were just taking in the information and could not provide any insight since they have never seen her before. I advised that they look up her history from the NICU, and they informed me that none of the computers are networked together. That was frustrating.

It felt like we went to a hospital in Denver or somewhere that they had never seen Ella. I know we will have to face that scenario some day, but we were just released last Friday, 5 days ago. It just seemed unreal.

Once we were settled in our room, it was tough to get some of the comforts that we were used to having for Ella, such as a positioning aid. We were getting the runaround. Josh got frustrated and decided to walk down to the NICU and get them himself.
When he laid eyes on familiar faces, especially Nurse Marla, he just started crying. Nurse Marla took the time to make sure that we had what we needed and walked back up to see Ella. She was the first visitor, although throughout the rest of the day and night, more and more NICU staff came to see the three of us. It was so comforting to see the people that care about Ella and also understand her history. The pediatrics nurse joked to us that if she charged admission, she would be rich.

Dr. Kays did stop by in the room to examine her. The first thing he did though was just walked in and gave us both hugs. I think that says it all.

Ella’s hands on assessment was good. Her lungs sounded clear. After 15 minutes, he came back and noted that her chest x-ray is one of the best he has seen. Her blood lab work came back and all her levels look great. They ordered an echocardiogram for the morning and they expect that it will be fine. At this point, they think it is simply a fluid issue again, so they have decided to increase her diuretic dose of Bumex, starting tomorrow at 8am.

We agree that it is likely fluid related because her face looked more puffy today than normal. Also, all last week in the NICU she was losing weight (likely getting off the excess fluid and going towards a true weight). As of today, she gained a good amount of weight. Yet, the only change that we made was the food – they switched her to 100% formula. They made this change late last week and did not really have a chance to monitor her adequately before discharge.

So here we are spending the night in chairs next to Ella’s bedside. There is no way that we would leave our girl here unattended. It is definitely not safe like the NICU.

We are hopeful that the echo will go well, we can grab our new diuretics prescription and that we can go home again.

As you might imagine, we were already exhausted with the everything going on the past few days. Today’s events just added to it and we are beyond exhaustion.

Our physical bodies may be depleted, but our spirits remain steadfast in our Lord.

All we know is that everything that happens is part of His plan, but sometimes the plan can be incredibly painful.

Please pray that all three of us would be refreshed tonight, and that we would be discharged from the hospital tomorrow.

Wow, today was rough.

Last night, we continued to notice that Ella was having a hard time breathing. We could tell because her saturations were in the low to mid 90s and her heart rate was between 155 and 180 while she was sleeping. When she left the NICU last week, her saturations were 100 and her resting heart rate was 115 and even lower. When you looked at her, you could see that her breathing was more labored. When we thought about it harder, it explained a lot of her fussy behavior the past 2 days. Something told us that things were not right and heading in a direction that could be bad.

At 6:30am, I decided to call the NICU and talk to Nurse Michelle. She agreed that didn’t sound right and offered to come by our house to take a look at Ella. Plus, it gave her an excuse to see her and give her a squeeze! Once she saw her in person, she agreed that this was not the same baby that we took home last week. By that time, we had increased her oxygen to 1 liter.

As soon as the office for the pediatrician opened, we were on the phone with Dr. Sarantos. She opted to call Dr.Kays to see what he wanted to do, especially because she is just getting to know Ella. Dr. Kays decided it would be best if we went to the ER and had him paged.

All was moving along fine in the ER. They placed us in a room, away from the public waiting area and we had a chest x-ray. Ella did not like it but we managed to get through it. Dr. Kays was also looking for her blood lab work. If you remember, she just had her blood drawn yesterday at Dr. Sarantos’s office, but somehow there was a miscommunication and he ordered another set from the ER. We were told that a NICU nurse would be coming to do the prick since Ella is a tough one.

A few minutes later, two ER nurses showed up to draw the blood. They told us that the NICU was contacted but there was not a nurse available (we later found out that wasn’t true). Josh decided to stay outside the door and make a couple of calls. I knew Ella would not do well, so I tried to warn the nurses. They began to look for an area to get the line in. Then, I realized that they wanted to do an IV line, which has always been a tremendous challenge on Ella. I warned them that she was in the ER for respiratory distress and was already on 1 liter, but they should increase her oxygen during this time because she will likely get air starved.

The next 10 minutes were the longest 10 minutes of my life. The nurses both blew me off and did not heed anything I told them. Once they started, they were not having success and with each further prick, Ella was getting more and more upset and not able to catch her breath. I was helping to console her and hold her down (she gets so mad that she will throw her arms and legs around).

When my daughter was a bluish/purple color for an extended amount of time, could not catch her breath and had that look of fear in her eyes, it was so tough for me. I continued to vocalize that she needed more oxygen support to help her and the nurses completely ignored my input. This was the most horrifying experience for me. When I looked down the next time, Ella’s mouth was full of blood. I had no idea where or how it got there. She was so mad and fighting me so hard. I was having to hold her down, keep the limited oxygen she had in her nose and try to keep her from inadvertently scratching herself. I started to cry and raised my voice louder to the nurses to let them know that we needed to take a quick break so Ella could catch her breath. It is not good for her to go extended periods of time with limited oxygen supply. They patronized me and told me that “all babies get upset”. I was in tears when Josh burst through the door and asked, “What is going on here?” He noted everything and immediately ran to the oxygen meter on the wall and turned it up (sometimes it’s easier to ask for forgiveness than permission), ran back out in the hallway and yelled out that we needed help in the form of blow-by oxygen. Thank the good Lord that Josh walked in when he did.

As the nurses were leaving the room, I had to tell them my thoughts. Through my tears, I thanked them for the job they perform each day, but told them that I was really offended that they did not listen to me. As much as I respect their experience and position, I know my daughter way better than they do and that they should have listened to me. I felt like they completely blew me off.

Once we were able to calm Ella down, which took a solid 15 minutes of 3 liters of oxygen via the nose cannula plus blow-by oxygen, we realized that she scratched her nose, ears and lips (this is why there was blood in her mouth). Later the same nurse walked in while we were still stabilizing Ella and went to turn down the oxygen. Josh told her firmly to not touch the oxygen. She started to explain and he simply asked her to leave.

To top it off, we found out later that Dr.Kays did not even order the IV; he just wanted the blood drawn. So, all of it was unnecessary. Those 10 minutes are forever etched on my memory. I have never experienced anything so horrific. My daughter was not just crying because she was mad; she was being air-starved and had a look of fear on her face. The blood in her mouth did not help, since I was not sure of the cause while the incident was occurring. It was just a scary moment for me.

Josh and I have experienced Ella being air-starved before, but it has always been within the controlled environment of the NICU. I thought that was bad enough to experience it in that setting because it is so hard on Ella. Today has to have topped it off as the hardest experience with Ella. I couldn’t help but cry hard. I love my baby girl so much and they literally just tortured her for an unnecessary reason.

Once they admitted us to the hospital, we ended up on the fourth floor in the pediatric floor. Between the ER and the pediatric unit, everyone that was seeing Ella had never seen her before. They were just taking in the information and could not provide any insight since they have never seen her before. I advised that they look up her history from the NICU, and they informed me that none of the computers are networked together. That was frustrating.

It felt like we went to a hospital in Denver or somewhere that they had never seen Ella. I know we will have to face that scenario some day, but we were just released last Friday, 5 days ago. It just seemed unreal.

Once we were settled in our room, it was tough to get some of the comforts that we were used to having for Ella, such as a positioning aid. We were getting the runaround. Josh got frustrated and decided to walk down to the NICU and get them himself.
When he laid eyes on familiar faces, especially Nurse Marla, he just started crying. Nurse Marla took the time to make sure that we had what we needed and walked back up to see Ella. She was the first visitor, although throughout the rest of the day and night, more and more NICU staff came to see the three of us. It was so comforting to see the people that care about Ella and also understand her history. The pediatrics nurse joked to us that if she charged admission, she would be rich.

Dr. Kays did stop by in the room to examine her. The first thing he did though was just walked in and gave us both hugs. I think that says it all.

Ella’s hands on assessment was good. Her lungs sounded clear. After 15 minutes, he came back and noted that her chest x-ray is one of the best he has seen. Her blood lab work came back and all her levels look great. They ordered an echocardiogram for the morning and they expect that it will be fine. At this point, they think it is simply a fluid issue again, so they have decided to increase her diuretic dose of Bumex, starting tomorrow at 8am.

We agree that it is likely fluid related because her face looked more puffy today than normal. Also, all last week in the NICU she was losing weight (likely getting off the excess fluid and going towards a true weight). As of today, she gained a good amount of weight. Yet, the only change that we made was the food – they switched her to 100% formula. They made this change late last week and did not really have a chance to monitor her adequately before discharge.

So here we are spending the night in chairs next to Ella’s bedside. There is no way that we would leave our girl here unattended. It is definitely not safe like the NICU.

We are hopeful that the echo will go well, we can grab our new diuretics prescription and that we can go home again.

As you might imagine, we were already exhausted with the everything going on the past few days. Today’s events just added to it and we are beyond exhaustion.

Our physical bodies may be depleted, but our spirits remain steadfast in our Lord.

All we know is that everything that happens is part of His plan, but sometimes the plan can be incredibly painful.

Please pray that all three of us would be refreshed tonight, and that we would be discharged from the hospital tomorrow.

Today was challenging in many respects, but also rewarding.

The more Josh thought about it, the more he knew that he needed to come with me to the pediatrician. Ella is still somewhat marginal; she can get air starved in a matter of seconds. She is reliant upon her medicines, but also the oxygen that she is getting. When the cannula comes out of her nose and/or she gets herself worked up, she gets sweaty and air starved pretty quickly. That would be tough to manage while driving the car. So, Josh resolved to take a longer lunch and work late into the night to make up the time.

It was a wise thing to have both of us present. First of all, the car ride was really tough. Ella doesn’t like it – - she would much rather be held. We had to increase the oxygen both there and back as there was not a great way to console her while the car was in motion. And that made her mad!

Once we got to the pediatrician’s office, I went inside to complete the paperwork while Josh entertained Ella in the car. I was glad to see that they have a “well kid” room. Those kids that are not sick wait in a different room. That is a great idea and made me feel more comfortable. Fortunately, the office was slow when we arrived and we ended up being the only ones in the waiting area.

The visit with Dr. Kathy Sarantos was amazing. It was apparent why she is so highly respected in the medical community as well as among local parents. Normally, she does not accept new patients, so we feel so fortunate to have the opportunity to have her overseeing Ella’s care. She shared that her daughter, Sydney, was also born with a congenital diaphragmatic hernia. Although Sydney’s duration was much shorter, we could tell that there was an understanding medically as well as from a parental role. That was extremely comforting.

Many of our concerns were alleviated, such as the stool frequency issue. It is not a problem for Ella to take 36 hours to stool (although she had one this morning, so that was only 24 hours!). However, we brought up a few concerns that she was not able to address directly on the spot, but she is so well connected that she has a way to figure out the answer. One example is Ella’s g-tube. We think that there might be something wrong with the valve. Since she does not have a depth of experience with g-tubes, she is going to have a colleague contact us to discuss our concerns.

We are scheduled to see her again in 2 weeks. Before we left, Dr. Sarantos decided to draw blood and analyze Ella’s electrolytes and potassium (they were supposed to on the day of discharge in the NICU, but it didn’t happen). Checking these levels is especially important while Ella is on a strong diuretic like Bumex. So although Ella is familiar with needles, that does not mean that she likes them. Once again, we had a melt-down moment.

When we were getting ready to leave, Josh mentioned about our journey being recorded on this blog and one of the colleagues pulled up the site on the office’s computer. I stayed in the exam room and dressed Ella, but in the background, I could hear a bunch of ladies hovered around the computer ooh-ing and ahh-ing over the recent photos of the Bun. It was sweet of them.

We were almost out the door when Michelle that works in the office pulled us over to a separate room. She had us meet Carol, the office manager. Michelle got teary-eyed and stated that even with the small amount of our story that she has been able to absorb, that they want to do something nice for us. They almost see it as a ministry. She handed us her email address and asked us to think about what they could do for us that would help out.

Josh decided to gather everyone around, including Dr. Sarantos and take a quick photo. All I can say is that I was in a fog while it was occurring. Only now do I realize what was happening…wow. So unexpected and so nice. I’m just speechless.

I know that we have a miracle girl that God has placed in our hands. But it amazes me to see when we faithfully share as prompted, how He continues to use Ella to touch lives. This was a clear example.

Once we left the pediatrician, it didn’t stop there. Josh was starving so we went through a nearby drive-thru before getting back on the highway. As soon as we pulled out of the drive-thru and waited at the stop light, all of a sudden, the large truck in front of us with a large trailer on the back started backing up into our car. Josh was laying on the horn, but that did not seem to make a difference. The lady driving the truck just kept trying to reverse. Once in the clear, Josh reversed and drove around to the front of the truck to show the lady. She was not aware that she had backed up into the car; she has poor hearing which was evident just by talking to her (probably why she did not hear the horn).

As I tried to continue consoling Ella in the car, Josh was working out the details. I started praying and thanking God for His provision that no one was injured. Also, I started to feel a peace from Him. He ordained this incident too. I began to ask if there was something further that He wanted from us.

When Josh got back in the car, he said, “That was no accident. God doesn’t have accidents. I just shared about Ella with that lady and she shared that her granddaughter has cancer, so I just prayed with her.”

The Lord works in mysterious ways. It is comforting to know that He will always watch over us, no matter what happens in the day.

Psalm 121:1-3
I lift up my eyes to the hills—
where does my help come from?

He will not let your foot slip—
he who watches over you will not slumber

Please continue to pray for Ella’s strength – - her heart rate looks a bit elevated which has not been a good sign in the past. We’re hoping that it is nothing and that she is getting healthier each day. Also, for Josh to finish his recent work project timely and for me to enjoy my time with the Bun and fight off any sickness.

Thanks for the continued thoughts and prayers.

Today was challenging in many respects, but also rewarding.

The more Josh thought about it, the more he knew that he needed to come with me to the pediatrician. Ella is still somewhat marginal; she can get air starved in a matter of seconds. She is reliant upon her medicines, but also the oxygen that she is getting. When the cannula comes out of her nose and/or she gets herself worked up, she gets sweaty and air starved pretty quickly. That would be tough to manage while driving the car. So, Josh resolved to take a longer lunch and work late into the night to make up the time.

It was a wise thing to have both of us present. First of all, the car ride was really tough. Ella doesn’t like it – - she would much rather be held. We had to increase the oxygen both there and back as there was not a great way to console her while the car was in motion. And that made her mad!

Once we got to the pediatrician’s office, I went inside to complete the paperwork while Josh entertained Ella in the car. I was glad to see that they have a “well kid” room. Those kids that are not sick wait in a different room. That is a great idea and made me feel more comfortable. Fortunately, the office was slow when we arrived and we ended up being the only ones in the waiting area.

The visit with Dr. Kathy Sarantos was amazing. It was apparent why she is so highly respected in the medical community as well as among local parents. Normally, she does not accept new patients, so we feel so fortunate to have the opportunity to have her overseeing Ella’s care. She shared that her daughter, Sydney, was also born with a congenital diaphragmatic hernia. Although Sydney’s duration was much shorter, we could tell that there was an understanding medically as well as from a parental role. That was extremely comforting.

Many of our concerns were alleviated, such as the stool frequency issue. It is not a problem for Ella to take 36 hours to stool (although she had one this morning, so that was only 24 hours!). However, we brought up a few concerns that she was not able to address directly on the spot, but she is so well connected that she has a way to figure out the answer. One example is Ella’s g-tube. We think that there might be something wrong with the valve. Since she does not have a depth of experience with g-tubes, she is going to have a colleague contact us to discuss our concerns.

We are scheduled to see her again in 2 weeks. Before we left, Dr. Sarantos decided to draw blood and analyze Ella’s electrolytes and potassium (they were supposed to on the day of discharge in the NICU, but it didn’t happen). Checking these levels is especially important while Ella is on a strong diuretic like Bumex. So although Ella is familiar with needles, that does not mean that she likes them. Once again, we had a melt-down moment.

When we were getting ready to leave, Josh mentioned about our journey being recorded on this blog and one of the colleagues pulled up the site on the office’s computer. I stayed in the exam room and dressed Ella, but in the background, I could hear a bunch of ladies hovered around the computer ooh-ing and ahh-ing over the recent photos of the Bun. It was sweet of them.

We were almost out the door when Michelle that works in the office pulled us over to a separate room. She had us meet Carol, the office manager. Michelle got teary-eyed and stated that even with the small amount of our story that she has been able to absorb, that they want to do something nice for us. They almost see it as a ministry. She handed us her email address and asked us to think about what they could do for us that would help out.

Josh decided to gather everyone around, including Dr. Sarantos and take a quick photo. All I can say is that I was in a fog while it was occurring. Only now do I realize what was happening…wow. So unexpected and so nice. I’m just speechless.

I know that we have a miracle girl that God has placed in our hands. But it amazes me to see when we faithfully share as prompted, how He continues to use Ella to touch lives. This was a clear example.

Once we left the pediatrician, it didn’t stop there. Josh was starving so we went through a nearby drive-thru before getting back on the highway. As soon as we pulled out of the drive-thru and waited at the stop light, all of a sudden, the large truck in front of us with a large trailer on the back started backing up into our car. Josh was laying on the horn, but that did not seem to make a difference. The lady driving the truck just kept trying to reverse. Once in the clear, Josh reversed and drove around to the front of the truck to show the lady. She was not aware that she had backed up into the car; she has poor hearing which was evident just by talking to her (probably why she did not hear the horn).

As I tried to continue consoling Ella in the car, Josh was working out the details. I started praying and thanking God for His provision that no one was injured. Also, I started to feel a peace from Him. He ordained this incident too. I began to ask if there was something further that He wanted from us.

When Josh got back in the car, he said, “That was no accident. God doesn’t have accidents. I just shared about Ella with that lady and she shared that her granddaughter has cancer, so I just prayed with her.”

The Lord works in mysterious ways. It is comforting to know that He will always watch over us, no matter what happens in the day.

Psalm 121:1-3
I lift up my eyes to the hills—
where does my help come from?

He will not let your foot slip—
he who watches over you will not slumber

Please continue to pray for Ella’s strength – - her heart rate looks a bit elevated which has not been a good sign in the past. We’re hoping that it is nothing and that she is getting healthier each day. Also, for Josh to finish his recent work project timely and for me to enjoy my time with the Bun and fight off any sickness.

Thanks for the continued thoughts and prayers.

Today was the first day as Mom in my solo role.

Thankfully, I have survived and am here to record the details. Actually, the Bun slept a lot today which was a blessing for me.

Around 10am, Ella finally stooled. This is on track for 1 every 36 hours which is something we want to address and be careful of based on her surgical history. Remember that her bowels developed in her chest and were moved down during her repair surgery, so there is always a higher chance of bowel obstruction.

I don’t sense that there is anything major going on with it right now, but it is just something that we want to watch closely. We can tell that not stooling more frequently, like she was prior, is causing her great discomfort. Because of this, we decided to start using the food pump and doing feeds over 30 minutes versus a bolus feed. She seemed to be getting very fussy right during the bolus feed, so we think that it might be causing too much pressure for her.

Mid-day, I was able to catch about an hour of sleep while Ella was napping. Normally, I cannot nap. This just means that my level of exhaustion was worthy of a nap.

The day was fairly uneventful until this evening when we had to switch out Ella’s nose cannulas. They have to be switched once per week. The actual task of switching them out is not a big deal, however, Ella’s skin is so sensitive that the tape on each side has caused major skin break down over the past several weeks. So, when you have to remove the cannulas, you have to remove and replace the tape. This causes Ella a great amount of pain. The challenge is that they are using the most sensitive type of tape around, Medipore, but it still causes her skin to break down.

So when we went to replace the tape, she had a major meltdown. Yes, she turned that lovely bluish/purple color all in her face. She was very upset and was having a tough time calming down. We had to crank up her oxygen to 1 liter and really spend the time to help her catch her breath again. The pictures for today’s post capture the moments once she settled down and had some Daddy time.

The meltdown moments are a bit scary. Thankfully, we know that the Lord has His hand on her at all times.

Tomorrow is our first pediatrician appointment. We’re anxious to meet Dr. Kathy Sarantos – - we have heard nothing but great things about her. She is another reason that we decided to stay close in Gainesville for the short term.

Honestly, I am a bit nervous on a few levels. Josh will be working so I am planning to go by myself. I am nervous about transporting her with the oxygen tank (which is not light). I’m nervous about driving with her in the back seat. Josh went tonight and bought me a mirror so I can see her from the driver’s seat. I think this will be important for me, especially if she starts to fuss. Most babies you can let fuss quite a bit without any adverse consequences, but Ella can literally get air starved if she works herself up too much.

Also, I’m nervous about going to a doctor’s office with a bunch of kids around (kids are known to be infested with germs) along with adults that I don’t know and trust. I really, really don’t want Ella to get sick. Finally, we are trying to get on a routine of feed times and medicines. Since my appointment is at a normal feeding time, I have to switch some things around to make it work. It just feels overwhelming when I am just trying to get used to the whole thing.

I know that there is really nothing that is worthy of my worry. The Lord will help me get through the day. I just need to surrender and ask Him to provide strength to get through the day, and not rely on my own strength.

Aside from this challenge, I realize that this is what we should be doing each day. Relying on Him and asking Him for guidance to get through the day, so we can make good decisions that reflect who we really are on the inside. And no matter what He delivers for the day, praising His name and giving thanks for all He has ordained.

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Today was the first day as Mom in my solo role.

Thankfully, I have survived and am here to record the details. Actually, the Bun slept a lot today which was a blessing for me.

Around 10am, Ella finally stooled. This is on track for 1 every 36 hours which is something we want to address and be careful of based on her surgical history. Remember that her bowels developed in her chest and were moved down during her repair surgery, so there is always a higher chance of bowel obstruction.

I don’t sense that there is anything major going on with it right now, but it is just something that we want to watch closely. We can tell that not stooling more frequently, like she was prior, is causing her great discomfort. Because of this, we decided to start using the food pump and doing feeds over 30 minutes versus a bolus feed. She seemed to be getting very fussy right during the bolus feed, so we think that it might be causing too much pressure for her.

Mid-day, I was able to catch about an hour of sleep while Ella was napping. Normally, I cannot nap. This just means that my level of exhaustion was worthy of a nap.

The day was fairly uneventful until this evening when we had to switch out Ella’s nose cannulas. They have to be switched once per week. The actual task of switching them out is not a big deal, however, Ella’s skin is so sensitive that the tape on each side has caused major skin break down over the past several weeks. So, when you have to remove the cannulas, you have to remove and replace the tape. This causes Ella a great amount of pain. The challenge is that they are using the most sensitive type of tape around, Medipore, but it still causes her skin to break down.

So when we went to replace the tape, she had a major meltdown. Yes, she turned that lovely bluish/purple color all in her face. She was very upset and was having a tough time calming down. We had to crank up her oxygen to 1 liter and really spend the time to help her catch her breath again. The pictures for today’s post capture the moments once she settled down and had some Daddy time.

The meltdown moments are a bit scary. Thankfully, we know that the Lord has His hand on her at all times.

Tomorrow is our first pediatrician appointment. We’re anxious to meet Dr. Kathy Sarantos – - we have heard nothing but great things about her. She is another reason that we decided to stay close in Gainesville for the short term.

Honestly, I am a bit nervous on a few levels. Josh will be working so I am planning to go by myself. I am nervous about transporting her with the oxygen tank (which is not light). I’m nervous about driving with her in the back seat. Josh went tonight and bought me a mirror so I can see her from the driver’s seat. I think this will be important for me, especially if she starts to fuss. Most babies you can let fuss quite a bit without any adverse consequences, but Ella can literally get air starved if she works herself up too much.

Also, I’m nervous about going to a doctor’s office with a bunch of kids around (kids are known to be infested with germs) along with adults that I don’t know and trust. I really, really don’t want Ella to get sick. Finally, we are trying to get on a routine of feed times and medicines. Since my appointment is at a normal feeding time, I have to switch some things around to make it work. It just feels overwhelming when I am just trying to get used to the whole thing.

I know that there is really nothing that is worthy of my worry. The Lord will help me get through the day. I just need to surrender and ask Him to provide strength to get through the day, and not rely on my own strength.

Aside from this challenge, I realize that this is what we should be doing each day. Relying on Him and asking Him for guidance to get through the day, so we can make good decisions that reflect who we really are on the inside. And no matter what He delivers for the day, praising His name and giving thanks for all He has ordained.

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Ella had another good night. There was only one minor crises this time.

Ella’s saturation monitor went off, so we were both up. The light was somewhat dim in the room, making it tough to see. After a bunch of theories as to why her saturations were lower (we must have switched the pulse oximeter three or four times, increased her flow, etc.), we turned on the brighter light and noticed that the cannulas had fallen from her nose. Well, that was another nice drill!

Aside from that, Ella slept through the night. She did wake up a bit earlier than normal due to her nose being stuffed up. When it gets blocked too much, she can’t suck on her pacifier and get enough oxygen through her nose at the same time so she gets frustrated and irritable. At that point, Daddy decided to pick her up and cuddle her in an upright position to help drain her sinuses (she is still having remnants of the cold that started 2+ weeks ago).

A home nurse service came again today to check on Ella. The nurse took vital signs and listened to her lungs. Everything checked out good.

Ella was in her normal mood until later in the day. Once she woke up from her afternoon nap, she seemed more fussy than normal. We think that it is because her digestion of the 100% formula is slowing things down and making it tougher for her to stool. Since she has been switched to the 100% formula about 5 days ago, her run rate is once every 36 hours (on breast milk, it was 1-3 times per day). So she remained fussy from 2pm on today. Once again, it is tough to watch her hurting and not be able to fix it for her. She is on special medication to help with digestion, and I think she will adjust, but it is just going to take time.

We tried going outside for a walk for the first time with the Bun. The weather was beautiful and we thought we would introduce Ella to the sun and breeze. At first, we tried placing her in the stroller. She did not want to be in there and pitched a fit. We immediately turned around and tried the Baby Bjorn instead since it seemed like she wanted to be held. Since Ella felt close to my heart, she relaxed and then fell asleep while we took a short stroll around the apartment community.

Tonight we had a nice surprise. Nurse Janet stopped by with dinner and came to hold the Bun for about an hour. That was so sweet of her to think of us and come to visit Ella. She too experienced Ella being fussy and confirmed that she thought it was likely the stool issue too.

As you may have assumed, I’m already feeling the effects of exhaustion that all new moms experience. Tonight, I’m not feeling 100% either. I hope that it is just lack of sleep and that I can get rid of the ill symptoms soon. More importantly, if I am catching anything, I do not want Ella to get sick (that could mean going back to the hospital).

Ella’s grandpa will be coming to visit in another week, but until then, I will be on my own each day with Ella while Josh is working. Please pray for me: I need endurance to keep up with Ella’s routine (I don’t want to get sick from the lack of sleep), and pray that I will be able to feel successful in taking care of her solo. There are many times that I could use a third arm!

All I can do is rest in His promises. Once again, that seems to be the theme during this whole journey.

Isaiah 41:9-11
I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

We are so blessed by our baby girl; we just want to do everything we can for her.

Thank you for the continued prayers. We appreciate the love and support from each one of you.

Ella had another good night. There was only one minor crises this time.

Ella’s saturation monitor went off, so we were both up. The light was somewhat dim in the room, making it tough to see. After a bunch of theories as to why her saturations were lower (we must have switched the pulse oximeter three or four times, increased her flow, etc.), we turned on the brighter light and noticed that the cannulas had fallen from her nose. Well, that was another nice drill!

Aside from that, Ella slept through the night. She did wake up a bit earlier than normal due to her nose being stuffed up. When it gets blocked too much, she can’t suck on her pacifier and get enough oxygen through her nose at the same time so she gets frustrated and irritable. At that point, Daddy decided to pick her up and cuddle her in an upright position to help drain her sinuses (she is still having remnants of the cold that started 2+ weeks ago).

A home nurse service came again today to check on Ella. The nurse took vital signs and listened to her lungs. Everything checked out good.

Ella was in her normal mood until later in the day. Once she woke up from her afternoon nap, she seemed more fussy than normal. We think that it is because her digestion of the 100% formula is slowing things down and making it tougher for her to stool. Since she has been switched to the 100% formula about 5 days ago, her run rate is once every 36 hours (on breast milk, it was 1-3 times per day). So she remained fussy from 2pm on today. Once again, it is tough to watch her hurting and not be able to fix it for her. She is on special medication to help with digestion, and I think she will adjust, but it is just going to take time.

We tried going outside for a walk for the first time with the Bun. The weather was beautiful and we thought we would introduce Ella to the sun and breeze. At first, we tried placing her in the stroller. She did not want to be in there and pitched a fit. We immediately turned around and tried the Baby Bjorn instead since it seemed like she wanted to be held. Since Ella felt close to my heart, she relaxed and then fell asleep while we took a short stroll around the apartment community.

Tonight we had a nice surprise. Nurse Janet stopped by with dinner and came to hold the Bun for about an hour. That was so sweet of her to think of us and come to visit Ella. She too experienced Ella being fussy and confirmed that she thought it was likely the stool issue too.

As you may have assumed, I’m already feeling the effects of exhaustion that all new moms experience. Tonight, I’m not feeling 100% either. I hope that it is just lack of sleep and that I can get rid of the ill symptoms soon. More importantly, if I am catching anything, I do not want Ella to get sick (that could mean going back to the hospital).

Ella’s grandpa will be coming to visit in another week, but until then, I will be on my own each day with Ella while Josh is working. Please pray for me: I need endurance to keep up with Ella’s routine (I don’t want to get sick from the lack of sleep), and pray that I will be able to feel successful in taking care of her solo. There are many times that I could use a third arm!

All I can do is rest in His promises. Once again, that seems to be the theme during this whole journey.

Isaiah 41:9-11
I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

We are so blessed by our baby girl; we just want to do everything we can for her.

Thank you for the continued prayers. We appreciate the love and support from each one of you.