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.

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.

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.

Wow, we’re finally home with our girl, and let me tell you, the last 30 hours we’ve had with her have been filled with joy, tears, and monster doses of anxiety for Dad.

Yes, we did get some sleep last night. However, it was not without some drama. We were sent home with a pulse oximeter which shows Ella’s heart rate and oxygen saturation. This is something we really only expect to use while she’s sleeping, to let us know if there’s an issue during the night (and maybe during the day if she is having an “episode”).

Before falling asleep, Tina and I talked about an emergency plan. For example, what happens with the likely possibility of the power going out, which can happen frequently in Florida. If this happens, her oxygen compressor will alarm real loud to let us know that the power is out, but we would need to have a flashlight handy and immediately switch Ella over to a portable oxygen tank. I had a plan in mind and was ready to jump into action when duty called.

Well at about 4:45am this morning, Ella’s saturations started dropping and the alarm goes off. I went into total panic mode, thinking her main oxygen concentrator failed or something. So while Tina is at Ella’s crib calming her down, I’m switching her oxygen supply and I get it done in no time.

Thank God for my calm, collected, rock of a wife. She informed me that the Bun was fine, but just waked up a bit, cried a little, needed a diaper change (yeah…something every baby does). Tina didn’t have her glasses on and had no idea what I was doing, but once she figured it out, she looked at me with a look only a wife could give her husband. Our girl was fine, I just decided to have a spontaneous “fire drill” at 4:45 in the morning. After catching my breath, I chuckled a bit to myself while lying back down, and fell back asleep.

The scenario described above has been the theme of our experience so far. The amazing wife, totally dialed into taking care of our girl, and Dad freaking out over the smallest things.

I have received an insane amount of smiles from the Bun today. It started from the time she woke up at 7:30 this morning, and hasn’t stopped all day. Nothing like rewarding her crazy father with all those smiles. She’s such a sweetheart!

At this moment we’re putting her down for the night. We praise God for this glorious day, and for this precious time we have with her.

Thank you for your steadfast support for all three of us and for all the words of encouragement. Please pray that Ella will grow in her strength, that her Dad will learn to take a breath once and awhile, and for Mom to grow a third arm so she can continue to take care of BOTH her babies.

Good night all.

Yes, it happened! They let us leave the hospital with Ella Bun.

Our official discharge started this morning at 9am at our apartment. The home oxygen service that normally meets parents at the bedside made an exception to meet us at our apartment. They knew we had some concerns about the compressor unit and mobility with Ella, so they gave us all our training in our own environment. That was great.

We grabbed a quick bite to eat (our last without Ella) and headed back to the hospital for all the official discharge information. Everything from a complete medical history to when all your follow-up appointments are scheduled to all the hugs and well wishes from the NICU staff that have come to know and love Ella. It was exciting and sad for us all at the same time.

They had Ella sit in a car seat for 1 hour and monitored her saturations, just to make sure that she could tolerate that position. She passed with flying colors.

The only bummer is that they decided they wanted to check her potassium level before she left, so they could contact us and treat it if there was a problem. This is basically one more set of blood labs, so poor Nurse Kelly had to prick Ella shortly before discharge. That procedure got Ella very upset, but she recovered nicely and started to give smiles again shortly thereafter.

The ride home was easy and uneventful. She was looking around at first and then dozed off for a cat nap.

Once we arrived home around 5pm, it was time to hook Ella back from the portable oxygen to the compressor at home and unpack all her stuff. I could not believe all the stuff that we had accumulated at the hospital over the past 6 months.

I think we are a bit in shock. It doesn’t seem real that Ella is here with us tonight as we write this post.

Yes, I have to have a cheat sheet. Almost every hour, it seems that I must be doing something whether changing a diaper,venting her g-tube, feeding her, giving a med, etc. She was discharged with these medicines: Diamox administered once a day, Bumex administered twice a day (every 12 hours), Reglan administered three times a day (every 8 hours), Viagra administered four times a day (every 6 hours) and a multivitamin with iron once per day.

So far, we have gone through 2 feeding sessions, 3 medicines, a few diaper changes, a nap for Ella and a bath. She is falling asleep in Daddy’s arms right now. We have 3 more medicines before we retire for the night as well as setting up her continuous feed with a pump that will run from midnight till 8am. We will be waking up once to administer a medicine, otherwise we can all sleep through the night…and Ella has been sleeping through the night at the hospital. We will see what happens tonight.

Our first pediatrician appointment is Tuesday, Jan 29th. We’re excited to meet Dr. Kathy Sarantos; we’ve heard nothing but great things about her and her practice. We get to follow-up with Dr. Kays on February 5th and with the cardiologist on February 7th.

We weren’t sure what to expect, but I think all the training at the bedside has prepared us for this day. It has been nice to take care of Ella in the comforts of our home.

We are so blessed to have our baby girl at home with us tonight. It is amazing to think how far God has brought all three of us. We have been stretched beyond our imagination, emotionally and spiritually. And through all the pain, there has been such incredible joy.

Our baby girl is such a reminder of Him and His love. We hope and pray that all of you will continue to seek God and join us as we continue to trust Him in each moment, no matter what He has planned for the future chapters.

Thank you for all the thoughts and prayers.

Great Is Thy Faithfulness
by: Thomas. O. Chisholm

Wow, our baby girl is 6 months old today. It is amazing to think how much progress she has made already on this journey.

Ella had another echocardiogram today and the results were better. Her medicine is working wonders and they noted very minimal shunting. This means that there is a chance that her heart will be able to close the Patent Ductus Arteriosus (PDA) on its own. She has another follow-up appointment on February 7th.

The occupational therapist worked with Ella today on oral feeding. She gave her a small amount of formula orally through a special bottle that lets you control the flow from the nipple. On the fly, you can change it to have no flow to very minimal amounts while not having to take it from the baby’s mouth. Ella didn’t do that well yesterday when she first tried, but today she did great. That is a great sign of her potential to feed orally.

We are excited to let everyone know that she is being discharged from the hospital tomorrow! This means that Ella is spending her last night in the NICU at Shands! We’re so thrilled. Nurse Michelle is honored to be taking care of her. If you remember, Nurse Michelle is one of the fab four nurses that first made Ella feel at home in the NICU by making a bow and attaching it to her coband (see this post).

 
Our appointment for home oxygen training is in the morning at 9am. Normally, it is conducted bedside in the NICU, however they will be doing it at our apartment instead. It will be good to have them show us all the equipment in our own environment.

Once we are trained on all aspects of the equipment, we will be loading up a portable oxygen tank, our prescriptions for Ella and the car seat and heading off to the NICU for the remainder of the day. There are lots of discharge procedures to go through and last minute training topics to cover.

Just to clarify for anyone that has missed prior posts, we have been talking about this day coming for a long time. It is hard to believe that it has finally come our way and that Ella is well enough to go home.

When we say that we are excited to go home, we simply mean discharge from the hospital. Back in December, we prayed a lot about the next best steps. Our desire was to go back home to Colorado immediately. After a lot of prayer and several important things falling into place, it became clear that the Lord wanted us to stay in Gainesville close-by to Dr. Kays.

Our plan is to stay local in Gainesville until the end of July and move back to Denver in the summer. Here are some of the reasons that made our decision easier:

• Since Ella has been so marginal during her recovery, we felt it would be best to remain close to Dr. Kays and staff that is so familiar with her history.
• There is a great pediatrician local in Gainesville that has first hand experience with CDH babies.
• When I originally looked in Denver for a pediatrician and other specialists for Ella, I was running into road blocks. Staying here for the first several months allows me to research and set up a good network of doctors for Ella’s future care (this is not going to be easy and will take some time).
• We want to introduce Ella to the outside world slowly; Florida weather will allow us to do that while the winter conditions in Colorado right now would force us to stay inside most of the time.
• Driving back across the country in the middle of winter is not a great idea.
• The altitude in Denver is not going to make breathing easier for Ella. We think it will be better if she has some months at sea level before taking on that challenge.
• Taking on parenting is daunting enough, yet we feel that we have more support here in Gainesville for us and Ella. All our friends are staff in the NICU! Another added benefit, many of the NICU nurses will miss seeing Ella and may even want to babysit!

 
So, although we are excited to go back home to Colorado in the summer, we have total peace about staying in Gainesville for the next several months. We think it is critical for a smooth transition back to our real home in Colorado.

Please pray for our day tomorrow during discharge. We praise the Lord for how far he has brought all three of us and thank all of you for your unfailing love and support.

Psalm 57:10
For great is your love, reaching to the heavens;
your faithfulness reaches to the skies.

Today was another day of progress for Ella.

Her food was switched to 50% breast milk and 50% Similac 27 calorie. Also, the total fluid intake went up slightly. All of this in an effort to getting her to intake the maximum amount of fluid with the most calories suited to her condition. They were able to obtain a recipe for mixing the formula to 27 calories, which will work well for Ella at home. She has been tolerating the bolus feeds with no problem; this is great since it means we can spend less time on feeding sessions.

Ella had her first hearing test this morning. They placed 4 sensor leads on her head and a devise in her each ear, one at a time. I was curious how they conducted infant hearing tests. They liken it to an EEG, where it tracks the actual activity throughout the brain. They test it at various decibels to ensure proper hearing. They were able to tell us the results right away – – she passed her hearing tests in both ears! Since CDH babies inherently carry risks for hearing loss, she will need to be retested every 6 months to monitor her hearing.

The cardiologist came by to take a listen to Ella and explain the pulmonary hypertension. He told me that she has two conditions that are causing the pulmonary hypertension: Patent Foramen Ovale (PFO) and Patent Ductus Arteriosus (PDA). Also, he informed me that Ella will need to have an echocardiogram performed initially about 2 times per month. They will need to keep a close watch to maintain blood flow and oxygen levels and adjust her medicine as she gains weight. Also, if the patent ductus arteriosus (PDA) does not close on its own, she may need to have a corrective surgery for the heart defect(s) by the time she turns 1 year old.

Ella tried some oral feeding with the occupational therapist today and did not respond real well. It frustrated her and she got upset during the session with several crying spells. We will try again tomorrow; she may have just been too tired to try something so new. Either way, I was happy to see that even during her crying spells, she was maintaining her saturations in the 90s. Before, it took very little for her to lose it completely and down spiral into a mode of being completely air starved. But she is getting stronger and the combinations of medicines are helping her so much.

We are gathering our last minute items that we will need for the house, such as sterile water and syringes for medicine administration. Tomorrow, I will be picking up all her prescriptions. She will be taking Reglan, Bumex, Diamox and Sildenifil.

We will be discussing options for home oxygen solutions tomorrow. We hope to have a liquid oxygen system, because of the advantages of portability. However, we are still not sure if that is covered by insurance (versus a standard oxygen compressor) or if any of the home oxygen suppliers in this area even carry it.

Some of you have wondered how long Ella will remain on oxygen. As you have seen, many of these decisions are ultimately based on how Ella responds. Going off her history and what we know of her so far, there is a good chance that she will be on it for at least another year, if not longer. Keep in mind that going back to Denver is also going to delay her ability to wean off the oxygen support, due to the altitude.

The primary nurse practitioner came back today. She has been great and is trying her best to make sure all the details are buttoned up, so that we can be discharged sooner versus later. The latest word on discharge could be as early as Friday or as late as Monday. They do not discharge babies over the weekend, but we are pretty sure it will be one of those two days.

We would prefer Friday not only because it is sooner, but it would also give us the weekend to hang out with her and become accustomed to her care as new parents together. Either way, we are only a few days away from bringing home the Bun. We should have a final answer sometime tomorrow.

When I took Josh back to visit this evening with Ella, we decided to give her a bath. This has become her routine before going to bed for the night. This time, I let Daddy be more involved with the bath. He had a great time with Ella, as the pictures demonstrate.

Some of Ella’s biggest fans in the NICU have started to come by her bedside and say their well wishes over the past few days. Some nurses who only took care of her a few times, to those who took care of her many times. Tonight, she was giving lots and lots of smiles to Nurse Janet and Nurse Michelle who are part of her core nursing team. Also, Roger (who worked her ECMO pump way back in late July and August) came by to take a peek at her progress. One thing is for sure: Ella LOVES all the attention. She is going to miss all her friends in the NICU. It is all she has ever known.

We continue to be in awe of Ella and how far the Lord has brought her. She has been through so much and is such a strong little girl.

Thanks for the continued prayers for all three of us. We look forward to the next chapter of our journey and allowing you to continue along with us in heart and spirit.

Today was a full day for Ella. Surprisingly, she was up most of the day and only took 3 short 30 minute power naps. The rest of the time she was awake, bright-eyed, happy and smiling. We had a great time together.

The occupational therapist came to do a session with Ella. She showed me some developmental exercises that I can do with the Bun each day to help her. As you can see from the pictures, we tried the Baby Bjorn to see how she would like it and whether or not it would provide enough trunk support. She loved it! This will be a great thing to use at home, so I can have my arms free.

We are running out of breast milk and may be able to get another 24 hours worth before my frozen supply runs out. So today at 3pm, they decided to start mixing it 50/50 with formula (Similac, 24 calorie). They are still trying to determine which formula we will use at home.

All CDH babies under the care of Dr. Kays have a lower fluid intake. With Ella’s fluid issues, she is even more sensitive. So while she is in the hospital, they try to enhance and add more calories to the amount of limited fluid she intakes each day (e.g. she was up to 30 calorie Portagen). Unfortunately, they do not carry 30 calorie formulas over the counter and although you could try to mix it a certain way at home to make it 30 calories, the formula companies do not recommend it (gives too much of other nutrients/ingredients). So, this is something they will be trying to figure out over the coming days.

Although we do not anticipate any issues, please pray that Ella will not have any issues switching to the formula exclusively. Also, that the doctors will come up with a plan to get her enough calories so she can start to gain weight again.

Last night, she weighed in at 10 pounds, 7 ounces, which is much smaller than she should be at this age. She has been steadily losing weight and getting back to her “dry weight” (more of a true weight prior to her diuretic fluid issues in the past few weeks). But, we need her to gain weight and that will not happen without more calories.

Another change with feeding today is the method of feeding. Currently, she is on a continuous feed via a pump for 8 hours at night (this will stay the same when we are at home) and then she eats five times per day every three hours. When we feed during the day, we vent her g-tube for 10 minutes, feed via a pump over 1 hour, vent her g-tube for 30 minutes after the feed. She eats every 3 hours, so you only end up having an hour and 20 minutes where she is not “hooked up” to any feeding devices.

They want to try bolus feeding to provide us with more flexibility and lessen the time that Ella is attached to tubes. Bolus feeds are where you simply pour the entire amount into a syringe and it floats into her g-tube and belly via gravity; takes maybe 5-10 minutes. In the past when they tried the bolus feeding, Ella would retch a lot and not tolerate it well.

Today, we tried venting 10 minutes prior, a bolus feed, and venting 30 minutes afterwards for the 3pm and 6pm feed and Ella seemed fine. We really hope this works over the next couple of days, as it will provide more flexibility with her eating schedule.

Ella had her abdominal ultrasound this morning. By 6:45pm tonight, the official results came back and it does not appear to be any clotting in the area where the CVL was located – – praise God! Therefore, they decided to discontinue the low molecular heparin therapy. Yippee – – no more shots in her legs each day. Poor little girl!

The primary nurse practitioner that oversees Ella will be returning tomorrow. We are anxious to hear about her thoughts and the plan for discharge. We know it will be soon, but hopefully she can paint a clearer picture around the details of when that might be happening.

In the meantime, we are enjoying the time with Ella. It is so refreshing to see her relaxed and not laboring so hard just to breathe. I think that is why she has gained more energy and endurance over the past few days.

We continue to trust in Him for the timing of discharge for the hospital and ask for your continued prayers for our baby girl. We want to see her continue to get stronger and healthier each day. Also, please pray for rest and peace for us as we enter a new chapter of our journey.

Psalm 33:22
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.