Ella had a pretty uneventful day. This is a good thing. We want her to keep taking these steps forward with minimal “events”.

The Bun has been eating pretty steady too and they’ve upped her feeds from 60ccs to 64ccs. She’s being fed over an hour period at three hour intervals. Our girl is putting on some more chub as well. She’s now weighing in at 9lbs 7oz.

Her CPAP pressure is currently at 3, which Will (a respiratory therapist) commented on being the lowest he’d ever documented. Ella looks good though, and this gives us hope in her taking the next step to the regular nose cannulas (hopefully Thursday).

We had one of the NICU graduates come visit us today! Baby Evan and his mom Tamara stopped by to see us to drop off some early Christmas presents. Evan looked FANTASTIC! He was so engaging and bright eyed. It’s so encouraging to see these other CDH babies doing so well. What a true blessing.

When we arrived at the hospital tonight, Liz and Rusty were both with Par. It’s nice to be next to our friends in NICU 2, plus it’s comforting to know that Liz probably has at least one eyeball on Ella most of the time.

Tina and I did get a chance to talk to Jasmine and Chris tonight. Please continue to pray for baby Jonathan. He is still in a critical place. We ask that the Lord’s peace be upon his parents during this time.

We know that many of you have followed us on this journey in spirit, but have not posted a comment. Just know that we appreciate your thoughts and prayers that are lifted up for these precious children even though they are not done so in a public manner.

God Bless all of you.

Psalm 9:10
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.

Yep, it came as a total surprise…they moved Ella to the NICU 2 today around 3pm!

Actually, they were running out of bed space in the NICU 3 (normally, they do not send babies down while they are still on CPAP). So, it was not quite a graduation, but we know she would not have been moved if they did not think she was ready for it.

Fortunately, I had taken today off work as a vacation day so I was able to assist with the transition and get Ella used to her new space. On another good note, she was placed on a quieter, more private area of the NICU 2 right next to Par. The day consisted of lots of holding, rocking, cuddling and talking to Ella. It was a good time.

Nurse Marla took care of Ella this morning in NICU 3 and mentioned that she saw her do some “retching” about 30 minutes into her feeding (set at 60ccs continous over 1 hour). This might mean that we need to go a bit slower on the feedings to let her tummy expand some more (maybe try 60ccs continous over 1.5 hours).

Also, she was weaned down to a pressure of 3 on the CPAP machine. Steps in the right direction!

Dr. Kays came around this afternoon. We talked for a few minutes and he examined Ella, mostly by talking to her. He let me know that he is very happy with her progress and thinks “she looks great”. That is never a bad thing to hear!

When I left at the NICU at 6:30pm, Ella was fussy. She seemed over-tired. I trusted that the nurse would be able to calm her down. Apparently when shift change occured, Ella was still upset and had her lovely bluish tone to her skin.

Nurse Linda who took over for the night figured it out – – she picked her up out of bed and talked and played with Ella. Then, she calmed down. That was all she wanted.

By the time I brought Daddy back to see her tonight, she had just fallen asleep. She was very comfortable and sleeping hard. Her stats looked great (heart rate around 150, saturations at 100 and breaths per minute around 65).

Seeing her stats look this good was very comforting. We think it means that maybe she will be able to tolerate breathing without CPAP later this week. That maybe she is really getting stronger.

Dr. Kays wants her at a CPAP of 3 through Wednesday. If she can maintain her great stats through the next 3 days, he wants to try the nose cannula on her this week. We feel confident that she will stay strong to take that next step. We just don’t know if she will be able to maintain on just the nose cannulas with oxygen support. We hope so…what a perfect holiday gift.

Par seemed to be doing good today – – just working on his feedings and enjoying his mommy for the majority of the day. On the other hand, Jonathan does not look good. Although I talked to Jasmine this morning and she still seemed hopeful, the tone changed this afternoon. A nurse from NICU 3 came down to the NICU 2 to look for the “comfy” chair since Jasmine was going to get to hold Jonathan for the first time. Normally that would be exciting, but under the circumstances, I am sure it was tough for Jasmine. She is still trying to remain hopeful that Jonathan will defy all odds and that God will provide a miracle. Please pray for her and Chris as they endure this incredibly painful time.

Please pray that Ella will remain strong and be able to reach other milestones this week.

Also, Ella’s great grandma was admitted back into the hospital on Saturday morning. Please pray that she can regain her strength. Finally, Ella’s grandpa Jack has been very sick since the fires in San Diego. He has had trouble breathing from the smoke inhalation. This week, he went to the hospital and was diagnosed with pneumonia. Please pray for the Lord to heal his body and restore his breathing.

We thank the Lord for this time and we trust that He has a plan.

The weather in Denver is frightful, but the Bun is so delightful.

They discontinued her fentanyl today – – that is HUGE. This is the pain medicine that she has been on since birth. They are going to wait a few days just to make sure, but if all goes well, it means that her central line will come out soon. It is a potential source for infection, so the sooner it is removed, the better.

When we came to see her, she was just getting ready to shut eye. She must have felt our presence, woke up and decided to hang out. It was great to see her and hold her. You could tell that she was tired, but the excitement of her parents was too much.

She tried taking cat naps, but never really fell asleep in my arms. Therefore, 2 hours later, she became over tired and quite fussy. Finally right at shift change, she fell asleep. Thank God!

At shift change, we left and had dinner with Par’s parents – – that was fun. Of course, our conversation is centered around the babies and the NICU. It is such a blessing to have friends that we can talk with at that level…and they really understand. Please pray for Par this week – – that he will make progress with his feedings. Also, he is likely going to have his upper GI test which will test to see if he has reflux. We’re praying for a good outcome.

We have not seen Jasmine in a couple of days and our heart is heavy for her and Chris. Jonathan is still struggling to hold on. We hope and pray that he can overcome this mountain and begin to get better.

Ella has been on CPAP with a pressure of 4 and holding on well since last Wednesday. The plan is to wean her CPAP down to 3 tomorrow. We pray that she will hardly notice the change in pressure. Keep in mind that the next step after a few days would be trying the nose cannula with just oxygen support.

As you know, we are earnestly seeking the Lord’s will for our next steps. Please continue to pray that he will give us strength, endurance and wisdom concerning the decisions we need to make for Ella’s care. Are we to stay local for a little while in Gainesville or move back to Denver right away? As much as we want to go back home yesterday, our true joy comes in knowing that we are in His will and following His plan for our life. Whatever the outcome, we want it to glorify and honor Him.

John 15:5,8
“I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples.”

p.s. Yep, you guessed it. Pumps likes the Christmas tree too!

Ella’s Mom is home! Yay!
 
Tina made it back unscathed from traveling coast to coast. OK, maybe a little scathed, because she only got about 2 hours of sleep last night (ouch).
 
Ella Renae had a good day. Her stats still seemed a little elevated for my comfort, but her clinical signs were good. She was not really fussy, her lungs didn’t sound junky, and she was smiley and happy to see me. I spent most of the afternoon with the Bun and put her to sleep before going to pick up Tina.
 
Tina was flying in to Gainesville so I didn’t need to go far to pick her up. We grabbed quick bite and headed back over to the hospital. Our girl was still sleeping when we arrived.
 
Tina also made me feel better by confirming that her stats were OK. I know, I know…some of you nurses out there were trying to tell me that it was ok, but I’ve just seen it go the other way so many times before, that it was hard to not feel that way. Having Tina as a gut check confirmed that it doesn’t look bad. So, the one nurse who said she’d buy us dinner, if Ella started to decline, is off the hook. =)
 
We didn’t stay long with Ella because she was contently resting and Tina was totally wiped too. We decided to head home, which I was excited to do because I had a little surprise in store for Tina.
 
When Tina opened the door to our apartment she was greeted with some unfamiliar lights. I felt inspired to go get us a Christmas tree and decorate it as a welcome home present. I got up this morning and went to Home Depot and purchased a live tree, a few strands of lights, and a tree skirt with Frosty on it. Also, I had the assistance of a very good friend who was kind enough to lend me some ornaments.
 
Tina was very surprised and happy. She’s wanted a live tree for awhile, so I knew this would go over well. The last time we had a live Christmas tree was over 11 years ago! I’m basking in the glow of it as I write this post. Having the tree up really makes it feel like Christmas.
 
Thank you to all who have followed us so diligently on this journey. Your prayers and support are appreciated every moment of every day.
 
p.s I have not heard any updates on Par or Jonathan. Continuing to lift up both in prayer.
 

Ella had another good day. I was able to spend a lot of great awake time with her today which really lifted my spirits. She was very smiley and happy and we had a great time together.

There was some times where I thought she may be breathing a bit heavier, even when she was resting. In the past, this has been a precursor to her going down a not so good path. I may have jumped the gun a bit in this though. In fact, the nurse taking care of her thought I might have been too hasty in this thinking as well. Once I put Ella to sleep tonight, her stats were down where I was used to seeing them, and she seemed relaxed.

The bottom line: clinically speaking she looks great. She was very happy and overall has a very good temperament. She’s one heck of a sweetie. Fun to kiss her cheek and have her suck on the tip of my nose too. That makes everything all better. =)

Ella also had her fentanyl weaned again, and she had her phenylbarbital discontinued! This was a bit of a shock to me, because I figured she may be going home with it. This is her anti-seizure medication she’d been on for awhile. The dose she’d been on these days was not considered therapeutic at all, so they just stopped it. They’ll watch to see if she has any seizure activity, but the really don’t expect any. Very cool!

So here’s some other incredibly positive news. My grandmother was released from the hospital today! I just talked to her on the phone about 30 minutes ago. She was sitting in her chair, next to the fire, watching grandpa cook dinner, and feeling pretty good.

Honest to God, I’m in a little bit of shock over this. I mean, grandma was really not doing well a week ago, and now she’s back home. Now, she’s not fit enough to go dancing, and I was sure to have a talk with her regarding this, but the fact that she is home, and in good spirits is just awesome.

Praise God for the fighting spirit my grandma has. I now see one of the sources of were the Bun gets it from. Not that I had any doubt though.

Baby Par is cranking on too. He seems to be doing well with his feeds and continues his forward progress. So great that he’s taking to the food. Still praying for continued positive steps for this sweet boy.

Jonathan is still in a critical state. I saw Jasmine for a moment, but did not end up connecting with her today. I want to be able to be there for her, but also be respectful of what she’s going through and give her space. Please continue to pray for baby Jonathan as well as his parents.

Hebrews 13:20-21
May the God of peace, who through the blood of the eternal covenant brought back from the dead our Lord Jesus, that great Shepherd of the sheep, equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to whom be glory for ever and ever. Amen.

UPDATE 8:00AM (EST): My grandfather called this morning to let me know that grandmas was re-admitted to the hospital. She was having a hard time breathing last night and started coughing pretty good. It sounds like she just needed to be on oxygen, but we’ll see.

Ella is doing fine. She did have a positive day. I had a good time interacting with her and even spent some time with the occupational therapist, learning techniques to help Ella progress mentally and physically.
 
I was also able to visit baby Par down in the NICU 2. It was so great to see him in person! He looks like such a little man! And yes…he totally looks like his dad, Rusty…sorry Liz =). When I was there Liz started bottle feeding him, and it looked like he was taking to it pretty well. Thank God. Hopefully they will experience this trend more.
 
Regarding the title of this post, it is an expression of how I’m feeling at the moment. I’m tired tonight. I left the NICU around 11:30pm. I’m feeling a bit anxious for a few reasons.
 
First, there is no comfort in having the wife so far away these days. I can’t wait for her to come home on Saturday.
 
Second, I got to hang out with some of our favorite nurses, who are so incredibly special to us, and we’re going to miss being around them. Not only because we love them so much, but because they love our girl so much. I pray and hope that we can find a support system in Colorado that will be as incredible as these nurses have been.
 
And the third reason flows along with my heavy heart. Jonathan is not doing well. We trust the Lord that this precious boy is in His hands, but it is so difficult to see this kind of situation. I saw Jasmine for a moment as she was leaving the NICU, and she even asked if I was going to be around tonight. I said I was, but I didn’t see her come back while I was there.
 
Please pray for her. This is an incredibly difficult thing to go through.
 
Thank you all for your thoughts and prayers.
 
May our Lord’s peace be upon Jasmine, Chris, and the rest of their family this evening and in the days to come.
 
2 John 1:3
Grace, mercy and peace from God the Father and from Jesus Christ, the Father’s Son, will be with us in truth and love.
 

Ella had another good day.

Her CPAP pressure was weaned down to 4 this morning, and our girl seems to be tolerating it well. Her oxygen saturation is totally pegging 100%, and her heart rate and breaths per minute look comfortable too.

I arrived before shift change this evening and found the Bun fast asleep. I guess she’d been that way for about an hour. The nurse said she seemed overly tired in the afternoon, but was fighting going to sleep. She finally got Ella to go down and it looked like she was out.

She fidgeted around a bit while I was there, and lost her binky a couple times. I was there to put it in its proper place though, and she swiftly fell back to sleep.

I left to grab a quick bite during shift change, and came back to my girl sleeping. She was still sleeping when I left at 9:15 tonight. She barely even fussed when they took her blood pressure, and only stirred a couple times otherwise.

I’m glad to see her resting well because I know the sleep is helping her body heal. I just don’t want to her think that all this sleep is going to make her any cuter, because that’s just impossible. 100% cuteness = 100% cuteness. You can’t do 120% cuteness. Well, I guess if there’s a way, I’m sure the Bun will figure it out.

Tina flew out to California today on business and will be back on Saturday. It’s just me and the cats at the apartment. We’re thinking about cracking open a can of tuna, opening a bag of catnip, and calling it a party. We’ll see how things go though.

Baby Par is progressing along and is continuing to work on the feeding concept. We pray that he continues on the forward path and figures out how to swallow. Asking for patience, patience, and more patience for Liz and Rusty.

Please pray earnestly for Jonathan. He’s not been doing well the last couple days. It was hoped that after surgery he would progress forward, and there were some small signs, but now he’s taking some steps back. It doesn’t look like ECMO is helping as much as it should be. In fact he had another surgery this morning to remove more blood in his chest, a slide effect of the heparin that’s thinning his blood.

There’s a good chance Dr. Kays will be taking him off ECMO in the coming days to see if this helps this issue, but we just don’t know.

I was able to talk with Jasmine tonight, and share what the Lord put on my heart. Please pray for peace to wash over her, and her husband Chris.

Father God, we lift up baby Jonathan in prayer. We trust in your healing power, and have complete faith in your sovereignty. We know that you are in complete control. We don’t always understand your ways, and in fact, we know it’s this way for a purpose. All we can do is completely surrender and trust in you.

It is in the name of our Savior, Jesus Christ, that we pray. Amen.

Ella had another great day of healing.

Her fentanyl has been decreased to 1.5 mcg/kg/min or .2 ml/hr. They plan to wean two more times at a rate of once every other day, except for weekends. This means that maybe in 5 days or so, they will have discontinued the fentanyl. This would be great. She has been on it since she was born. Although they have been tapering it ever so slowly, we will still be waiting to see if she has any signs of withdrawal.

Her CPAP stayed at a pressure of 5 throughout today. If she has a stable night, the plan is to wean it to a pressure of 4 tomorrow. They will monitor her for Wed, Thurs and Friday to see if she can tolerate that flow of pressure and keep her stats high. If all goes well, they will leave her on a pressure of 4 for the weekend, just so she can gain more strength. Then next week, they would look to wean it to a pressure of 3.

Ella’s feedings are going well. They started to move toward bolus feedings. Instead of a continuous flow of 20ccs per hour, they have switched it to 60ccs over 2 hours, wait one hour and repeat. Over the next several days, they will try 60ccs over one hour, then 60ccs over 30 minutes, then 60ccs in a bolus feed (all at once). This is the final feeding goal for her to reach before she can be discharged. Of course, we will need lessons on how to feed her via the g-tube and how to work on getting her to feed orally, but hopefully that part will not take too much time.

Her weight last night was 9 pounds, 1 ounce. Slowly but surely, she is gaining weight.

It feels good knowing that we are moving in the right direction and have a scheduled plan. Our hope and prayer is that she can stay on track and just continue to become stronger. It would be such a nice holiday gift to have Ella getting well enough to where going home is in the near future.

Speaking of getting well, Ella’s great Grandma has made improvements over the last 48 hours. As a matter of fact, she may be released from the hospital on Friday if she can continue to make progress. Thank you for the continued prayers. We still hope that great Grandma can hold on to meet Ella face-to-face someday.

I will be going on a business trip to LA for the next few days, but Ella’s daddy will be keeping all of us updated on the Bun. It is hard to leave her for several days, but she is in good hands.

I hope she can continue to sleep as soundly as she has been the past few nights…doesn’t she look peaceful?

Ella Bun had a stable day as she hung out with Nurse Marla.
 
When Grandma and I arrived, she was a bit fussy. I think she was over-tired. She wanted to be held and rocked to sleep, although it took several tries before figuring that out! Once we were in the rocking chair with just the right rhythm and position (and of course you must have the binky), she finally settled in and took a nice cat nap in my arms.
 
Her fentanyl was dropped a bit as of 10pm tonight. There are probably 2 more scheduled weans before she is completely off the pain medication. She is still at a CPAP pressure of 5 at 45% oxygen. The plan is to drop the CPAP every 2-3 days that she remains stable, all the way down to a pressure of 3. This will probably take another week or so. From there, we will see if she can handle the nose cannula.
 
Grandma is leaving tomorrow, so tonight was her last time visiting with Ella until she is out of the hospital. She will certainly miss having Grandma talk and sing to her!
 
Nurse Marla stated that she thinks that Ella is making great progress since her nissen surgery — that she looks the best that she has ever seen her.
 
A new nurse has Ella tonight – – so it made it that much tougher to leave. I am hoping that Ella sleeps through the night just like she has done the past 3 nights.
 
Par is struggling a bit with his eating (lack of a desire to eat). Please pray that he would begin to be interested in eating and that he would not encounter any further struggles. Jonathan has been making small steps forward since his repair surgery, although being on ECMO is holding up the process. Please pray that he can make the continued progress in the next couple of days, so that Dr. Kays can take him off ECMO.
 
Ella’s lungs still need to continue to strengthen, so we pray that the Lord would continue His healing. It would be a great holiday gift for Ella to be strong enough to no longer require CPAP. As we have already experienced, we need to trust in His timing.
 
I started to research the doctors in Denver that can help us take care of Ella on an ongoing basis. As you know, Ella’s care is not straight-forward and we need to find a network of doctors for her care. I am not comfortable making the trip back home unless we have a network of doctors in place. I want to know there is someone to call, as we make our way towards our front door. We will be coming back to see Dr. Kays annually, but our intial search is for a pediatrician and a pulmonary specialist.
 
We want His best for Ella Renae. Please pray specifically wisdom, guidance and discernment. Ask for the Lord to help us listen and hear His still small voice.
 
Proverbs 16:3
Commit to the LORD whatever you do,
and your plans will succeed.
 

Ella had a fantastic day. I did too because I got to spend some quality one-on-one time with my girl while Tina and her mom did the mother-daughter shopping thing.
 
When I arrived at the NICU, Ella was asleep. To my surprise, her CPAP pressure (peep) had been weened down from 6 to 5. She’s still on 45% oxygen. Originally Dr. Kays said that he might ween her on Monday, but she’s looking so good, he decided to do it a day early.
 
It was amazing to see this little girl of mine, resting so comfortably. Looking at her cute little face, eyelashes, nose, mouth, arms, hands, fingers, (I could go on), it just doesn’t seem possible that she’s come through everything that she has…but she has, and what an inspiring testimony it is. I’m just in awe that she’s my baby girl.
 
I sat beside her pondering this, when she began to wake up. She gently opened her eyes and gave me some smiles. Such a precious girl. I figured she needed changing so I took care of business. Fortunately for me it was a “nice” diaper.
 
Then, Nurse Marla took Ella out of her crib and got us both settled into a reclining chair. Things were so comfy for both of us that we nodded off. Nurse Joy snuck a picture of us sleeping together. Ella was peaceful and seemed so comfortable. This is definitely the best I’ve ever seen her look.
 
During shift change, I bumped into Liz and asked how baby Par was doing. Overall it sounds like he’s doing good, but he experienced some feeding issues today. We hope that this is just a bump in the road and that Par will get back on track in the coming days. Please pray that Par’s feeding will improve and for Liz and Rusty’s peace during those times of feeling helpless.
 
I was also able to catch up with Jasmine. Jonathan is recovering from his repair surgery. It turns out that his CDH was more severe than expected. For this reason the surgery had some complications, taking around 10 hours to complete, but Jonathan is fighting hard and he is making forward progress. We praise God that he’s come through surgery and continue to pray for his kidneys, liver, overall healing, and positive steps forward. Please continue praying for this special boy.
 
After talking to Jasmine I went back to see our girl and was happy to discover that Nurse Janet has her tonight. It’s so reassuring when a core nurse is taking care of her. I was able to help Janet with Ella’s “hands on”, and afterwards starting calming the Bun down in preparation for bedtime. When, to my surprise, Tina walked up. I guess her and Grandma had to stop by and see our girl too. Upon seeing her mom, Ella was no longer interested in closing her eyes. I then went out to the lobby to let Grandma go back and see our girl while I put the post together.
 
Thank you for your continued prayer support for Ella and her friends.
 

 
p.s. I had a good trip out to California see my Grandmother. It was great to surprise her with my visit, and the look on her face alone made it worth it. She totally lit up when she saw me. It was amazing timing too because she was telling the nurse that morning how much she wanted to see me and my little girl. She settled for just seeing me, but I was able to share some videos of Ella with her as well. Currently, she is stable in the Cardiac Care Unit, but her lungs are not improving like we would hope. They’ll be using an endoscope tomorrow to explore her lungs to determine what other treatments she may need. We’re praying for her lungs, heart, and kidneys, and for her pain to be eased.