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.

Lord, we pray that Jasmine and Chris can find peace in your Word during this time. We pray that your Spirit will cleanse them of any lies that the enemy plants in their heads. We pray for Jonathan’s liver and kidneys to function, and for the bleeding to stop so that he can grow strong. We ask that when he comes off ECMO, that his lungs will begin to recover and do the job you created them to do.

Lord Jesus, we ask that you heal Jonathan, so that he may be a living testimony of your love and power. We praise you Lord for the blessing these children are, and we know they are all in your hands.

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

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.

Ella Bun had a good day. At this moment, Mom is doing what she can to calm her down and put her to sleep.

We noticed that Ella’s breathing is a bit more labored this evening. Her breaths per minute have been in the high 90’s. She has been awake, but this is higher than we’ve seen the last couple days.

Ella did have a chest x-ray this morning and her lungs still look “wet”. Her IV fluids could be contributing to her edema, and is probably the reason for her increased breaths. To help with this, she going to be given Diamox in between her Lasix regiment. She’s been on this med before, when she was more edemic, and it seemed to do the trick. We’re hoping for similar success this round as well. She definitely doesn’t look as swollen as times past, but it’s still something to keep an eye on.

Clinically speaking though, Ella looks great! She was happy and interactive tonight, and slept real solid last night. Her scar from surgery is healing nicely, and she’s handling her increased feeds like a champ so far (she’s up to 8ccs per hour right now). On that note, her food is going to be increased 2ccs every 4 hours until she reaches a total of 22ccs per hour of continuous feed. In the same way her IV fluids will also be decreased in the same manner. At this rate she should reach full feeds in about 36 hours.

Baby Par continues to do excellent, and we’re praising God for his phenomenal progress. Baby Jonathan is doing a little better too. His liver function has started to improve, and his swelling has gone way down. His kidneys are not doing so good, but he’s scheduled for repair surgery this Wednesday on ECMO. We hope this surgery will help him take the next steps to getting better.

Father God, you are worthy of our praise in all things. We pray that you will be glorified though these children. Thank you for their lives, and the lives they touch. Let us seek your face in our daily lives, and with every breath praise your name. You are awesome Lord. Hallelujah! Amen

Another good day for Ella. She looks to be healing well. The swelling in her belly has gone down, and her scar is less inflamed.

The Bun spent a good amount of time sleeping today. Nurse Kelly had her sitting up in her chair for a couple hours today while interacting with her. She was so pooped out when we arrived that she barely woke up for us.

We did get about 30 minutes of awake time with her. During that period we switched her back to a regular crib. Once Kelly got her positioned in there, Ella zonked back out. Nurse Kelly is so great at positioning Ella and getting her comfortable. She says she envisions how she would like to be positioned, and just does that to the baby. Honestly, I just think she has a magical way with the beanbags she uses.

Dr. Kays saw Ella briefly today. He talked about extubation tomorrow and starting up her feedings. Tina thought that Ella might do better with just one change and suggested that maybe we just start feeds tomorrow, and hold of on extubating for one more day. Ella’s nose still has a scab on it, and we’d like to see it heal just a bit more before we put her back on CPAP. Plus, she’s doing so well, we’d rather push her a little slower this time versus making too many changes. Ultimately though, we trust in Dr. Kays wisdom and will be content with what he recommends.

We were excited for Liz and Rusty today. The were able to hold Par for the first time! What a wonderful gift that is. Thank you for your prayer support for this family. Praising God for this great milestone! We’ve not had any recent update on baby Jonathan, but we continue to pray for his liver and kidneys.

We do have a specific prayer request for Ella. She looks fine clinically, and she’s behaving like she’s very comfortable. However, her x-ray has not improved since Tuesday when she was intubated. We are not real concerned about it at this time, because it might be just a leftover indicator of her micro-aspirating from the reflux (might just take more time to clear up). That being said, we hope it is not actually a sign of anything significant (i.e. fluid issues).

Please pray that Ella’s x-ray will clear up in the coming days and that her breathing will continue to grow stronger. With her reflux under control, and her food soon to be delivered via her g-tube, our main hurdle is getting her lungs better so she can breathe without the support of a ventilator.

Heavenly Father, we thank you for these wonderful children. They are such a precious gift from above. I pray that you will strengthen them, and that their lives will be a living testimony of your love.

We praise you for Par’s progress and ask that he continue on this track. We lift up baby Jonathan and pray for healing in his liver and kidneys. We ask for Ella’s x-ray to be clear in the coming days, and for her breathing to grow stronger so that she can be extubated with confidence.

We surrender all these things to you, knowing that your in complete control. We offer these requests in the Holy name of Jesus. Amen.

p.s. Can you believe Ella is four months old today!!! =)

What a great Thanksgiving yesterday! Ella did real well, resting up from her surgery, while Tina and I enjoyed two Thanksgiving meals. One with some friends in town, and the other with Par’s family and Jonathan’s mom.
 
We spent the morning with our girl before we headed over to have our first dinner. Our first meal was fantastic, complete with all our favorites: turkey, dressing, a incredible whipped sweet potato casserole, cranberries, green beans, and mashed potatoes. My grandmother overnighted her special cranberry sauce for us to enjoy, and it really made us feel like we were home. We then finished the meal off with an amazing home-made apple & pear pie. Man, I getting hungry just talking about it! =)
 
After stuffing ourselves there, we headed over to our second dinner. Par’s grandmother Barbara, with some help from others, put on a wonderful Thanksgiving feast at the Homewood Suites Hotel. The hotel staff allowed them to use their kitchen and dining area to put on the dinner. How nice of them!
 
Our time was spent appreciating each others company, and sharing what we were truly thankful for. It was so incredible that God ordained that we all come together in that moment. We are so blessed to have met the friends we have here.
 
Afterwards, we headed back to the hospital to be with our children. Upon our arrival we were excited to find out that nurse Michelle was taking care of our girl. She hadn’t been with her in weeks. It was nice to see her familiar face.
 
The Bun woke up for us to say hello, but went back to sleep after about 30 mins. We then headed home for the night.
 
Upon our arrival today our girl was asleep. She was very peaceful and looked real comfortable. She’s been real alert a few times, and we’ve had a good time interacting with her. At this moment, Mom is reading her “The Very Hungry Caterpillar”, and Ella’s enjoying it.
 
It’s not too fun with her ET tube these days because Ella’s very aware of it. When she was previously intubated I think she was still on a good amount of sedation, and it was all she knew. This time around she recognizes this tube in her mouth and isn’t liking it that much. Plus, it is giving her a pretty good gag reflex. In spite of this, her nose is looking a lot better which is good because she’ll probably be going back on CPAP in the coming days.
 
The IV in Ella’s foot came out today, so they’ll be using her central line to deliver all her meds. Her feedings were supposed to start up tomorrow, but her belly is still pretty swollen from the surgery. This is to be expected, but Dr. Kays indicated that we’ll be holding off on her food until the swelling goes goes down. She’ll be fed intravenously until then.
 
Our girl is scheduled to have another chest x-ray tomorrow to see how her lungs are doing. We’d expect it to look pretty good considering how she’s been behaving. Her vent settings have also been tweaked a bit. She’s now down to 16 breaths per minute and her O2 is at 50%.
 
Baby Par has been moved out of his private room and is in a space right next to Ella. Par is doing incredibly well, in fact he was extubated today! Praise God! So great to see the progress Par has made. He’s now on CPAP and I’m sure in the coming days he’ll get his first taste of some food. Please pray that Par’s lungs will strengthen, and that he will do well when comes time for feeding.
 
Please continue to pray for baby Jonathan. His liver and kidneys are not doing the job they need to be, and Dr. Kays won’t be able to do surgery until they do. We’re asking for healing in these organs, and peace for Jasmine and Chris (Mom & Dad).
 
We pray for Ella’s lungs to strengthen, and for her overall breathing to improve. We also pray for no infection to occur during this time of healing.
 
Thank you for being here with us during this extended journey in Gainesville. You’re words of encouragement in the comments, emails, cards, and prayers mean so much to us.
 
God Bless you all.

Valentines in Gainesville? Easter in Gainesville? No, I don’t think we’ll be here that long, but you never know. God’s timing is interesting to say the least. All I know is that we will be here until His work is done. We continue to trust Him, and know COMPLETELY that He is in control.
 
Ella was doing ok last night. I went back with Tina to see her and her stats were looking real good. She was sleeping soundly. It was good to see her so comfortable.
 
We received a call this morning from the nurse practitioner letting us know that Ella had a very rough morning, so much so that she had to be re-intubated.
 
This is not totally unexpected, and in some ways we think it’s a good thing because it will give Ella’s nose some much needed relief from the CPAP. We went in to see the Bun this morning and she was sleeping soundly, and her stats looked good.
 
Her x-ray this morning confirmed that her left lung was still collapsed and that her right lung had partially collapsed as well. This is probably the main reason for her intubation.
 
Dr. Kays had indicated that he would do her nissen surgery tomorrow, only if she was doing better. Considering her current state, we’re betting surgery will be pushed off until Monday or Tuesday next week.
 
The passage below has been on my heart this morning. Very appropriate for Thanksgiving week.
 
Philippians 4:4-7
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
 
Thank you for your continued coverage in prayer. I know there are many who do not post, but are with us here in Spirit. Praise God for all of you. His Kingdom come, His will be done. Amen.

Ella had a rough day today, and an even tougher evening. Ella has seemed more agitated the last few days, and when she does get upset, it takes her longer to calm down. To us, this is a sure indicator that our girl is really not feeling like herself.

After thinking about it more, we really felt like the morphine was the main cause of her issues. It’s the only thing that has changed in the last few days since her picc line came out. The problem may even be two fold: the fact that the morphine is being delivered via her NG-tube, possibly making her sick, and when she gets sick, and spits up, she’s not getting her dose of morphine, creating more withdrawal symptoms.

We could really tell that Ella was not feeling well when I was holding her tonight. She was ok for a little while (that’s when we snapped the pic above), but she really didn’t seem comfortable and just kept fussing. We indicated to the nurse that it wasn’t normal for her to be acting this way, and we talked about the possible issues with the morphine. She thought it might be a good idea to share this with the nurse practitioner, so she stepped away to go talk to her.

Some time had passed and we were doing everything we could to comfort Ella. We could just tell that her reflux was also bothering her, and with that she spit up. The spit up was very chunky and congealed. In the middle of this, the nurse returned to help me clean her up and Ella spit up again.

I could not calm her down. She was still fussing. The nurse practitioner showed up. We started talking to her, expressing our concerns. We put Ella in her bed, but something was wrong.

Ella was having a hard time breathing. She was extremely clammy and her head was very sweaty. Her O2 was dropping, and she couldn’t catch her breath. At this moment the practitioner was studying Ella’s chart, when I told her that something was not right. She went to examine Ella.

It was obvious that Ella was having difficulties breathing based on the fear in her eyes and how hard she was crying. She was starting to turn purple.

At this point, Tina and I were getting pretty upset. We couldn’t understand why the nurse was not giving her more oxygen by putting the mask over her face. We were getting more upset. The practitioner remained calm though, and we started to get control of ourselves and get out of her way.

They tried suctioning out her nose with a tube, but they were not successful. Ella’s nares were so blocked that they couldn’t pass the tube through. They tried a few times with different size tubes, but with no success.

Roger then came over to help out. Thank God for Roger. Not that the practitioner wasn’t doing well, she did a fantastic job, it was just nice to see a familiar face that had been with Ella in the past.

Roger then secured an oxygen mask over Ella’s face while they prepared a treatment to help her swollen nasal cavity. A few moments went by, then Ella spit up again. This time the practitioner was able to clear her mouth out with suctioning.

The other RT (Stef, another familiar face), showed up with an oxygen hood. This is used to humidify the air and, I may be wrong, but I thought they were also delivering some med that would help her nasal cavity as well.

Ella was still quite upset, so I tried to calm her down by singing to her.

She started to calm down….
She began to catch her breath…
Her stats starting coming back up…
She calmed down enough to fall to sleep…
Whew.

The nurse partitioner requested that a blood gas be taken to check Ella’s cO2 levels. They waited for her to calm down some more before they drew her blood. It requires a needle stick because she has no other lines in her right now.

Stef and Roger looked for a good vein to draw blood from. They thought they found a decent spot on her left hand, but passed the torch on to Joy from the transport team (Note: Joy made Ella’s bow when she was on ECMO, the pink one on the top of this page). Normally I run away during needle moments like this, but you couldn’t pry me away from my girl at this point.

The needle went in…Ella didn’t flinch. Joy was having some trouble finding the vein. Ella started to fuss after a bit, but then…finally…the blood flowed, and Stef drew it up into the syringe.

We then calmed Ella back down. She sucked hard on her binky, and started to fall asleep.

Her blood gas looked good. cO2 and pO2 were fine, and her pH looked totally fine which was really good to hear. If these were not in line, there was a chance of her being intubated. We’re glad she didn’t require it, even though it’s going to happen sometime this next week for her surgery.

Tina and I spent the rest of the evening calming her down, talking and singing to her. We finally got her to a solid sleep state around 11:45pm EST.

We hope to speak to Dr. Kays tomorrow about Ella’s nissen surgery. We’re even more anxious now that we see how great her potential is for aspirating when she throws up.

Pars parents (Liz and Rusty) were getting ready to head out too, so we walked out with them. So glad to have them there with us.

Thank you Lord for being right there tonight. Thank you for the nurses, RT’s, and other staff that were there to help Ella. Lord we pray for our baby girl to be stable tonight, and that she will not spit up at all. We praise you even through our moments of anxiety, and know that you never leave us or forsake us. We continue to pray for our baby girl as well as baby Par and Jonathan. We ask that you heal their bodies Lord. In Jesus name. Amen.

Ella did well today. She was absolutely wiped out though when we went to see her tonight. Between physical therapy, occupational therapy, and having a bath, our girl had a full day.

She also had a bit of drama last night as well. The Bun tends to sweat like her daddy. This doesn’t work so well with some of the bandage dressings. One important dressing is over her picc line.

When the nurse went to give her a bath last night, she looked down and her picc line was out of her arm. Not a good thing when you don’t expect it. Fortunately, it looked like it came out cleanly and there was no bleeding. It was scheduled to come out in the next few days anyways, we just didn’t expect it to come out on its own.

With the picc line out, they DC’d her fentynal, and are giving her very small doses of morphine through an IV in her foot to help with the weaning process. This is nice because she’s now down to just one pump. Pretty amazing if you think about it because at one point she had as many as 13!

We got to hang out with Tracy and her boys (Jacob & Jereme) tonight. We had dinner at Texas Roadhouse and then went to the hospital to see Ella. It was so sweet to see Tracy with our girl. I’m so glad we had the opportunity to meet her when we were first at the hospital. She’s been such a blessing to us and a source of strength as well.

We’re excited for the weekend so we can spend more time with Ella. We also hope to see Dr. Kays soon so we can talk about the next steps.

Thank you for the continued prayers for Ella, and the other NICU babies, Par and Jonathan.

God Bless