Yes, Ella and I get to have some one on one time. It was real good too. I was able to hold her while she was on the regular oxygen cannula. This is a lot easier to manage then when she’s on CPAP, even with all the other wires and tubes.

Ella is doing well today. She’s tolerated the “sprinting” so far. Just having 6 hours at a time off CPAP is a nice break.

We did get the results back from the upper GI, and it does look like her reflux is more on the severe side. This is to be expected, we were just hoping for other news.

We have not talked to Dr. Kays yet regarding the details, but I’m sure his opinion remains the same. We prayed for a clear indicator as to what direction we should take, and we consider this a pretty strong sign to go ahead with the nissen procedure and G-Tube.

While it’s not 100% official that we’ll be going down this path, it’s most likely the direction we’ll take. We know this will help Ella along with her progress and minimize the risk of infection due to aspiration.

On a positive note, this procedure could also help move us along quicker, allowing us to be home sooner. We’re in no rush though. We just want the best for our baby girl.

Some other good news, Ella was given a tiny bit of breast milk today by mouth! Now it wasn’t the best experience ever, she was a bit gagy, but the fact that they’re even trying this is encouraging. She’s still on her full feeds of portagen, so she won’t be missing any of her food.

I’m also feeling better today. I was wearing the mask as more of a precaution, but Ella kept looking at me funny, so I took it off a couple times to reassure her.

Tina is out of town until tomorrow night. She accidentally took both of our cameras with her so I had to rely on the camera they had in the NICU for our update. I’m just glad they had one here that I could borrow so we could have pictures to show. =)

Bun and I are missing Mom already, and we’ll be glad when she’s home.

Tracy Mitchell and her two boys will be coming down to visit tomorrow. We’re looking forward to seeing her again. We pray for her safe travels on the highway.

Lord, thank you for being with Ella tonight. We trust in your perfect plan, and we praise you for the privilege of having our baby girl well enough to take these next steps. We ask for wisdom and discernment in the coming days so that we may do what’s best for her.

We continue to pray for baby Par and Jonathan, and their respective families. May your peace be with them this evening.

Also keep the Mitchel family safe as they take the long 9 hour drive to Gainesville. In You Holy Name we pray. Amen.

Oh, our little girl’s sweet 16. Tina and I were able to give Ella a real bath today. Tina did most of the work along with nurse Janet. I was trying to take pictures and video of the event.
 
Ella likes her bath time. I now have a new appreciation for how much work goes into giving her a bath these days.
 
Overall our girl is looking pretty good. They were not able to get her upper GI test done today, but they’ve scheduled it for tomorrow at 3:30pm. We’ll be looking forward to hearing the results.
 
Please pray that her reflux is not that severe. We’d like to avoid having another surgery.
 
It’s midnight and the NICU and we’re wiped, so we’ll be keeping the post short tonight.
 
God Bless and have a good night all.

So the Bun is looking a lot better today. I think the increased lasix did the trick. Her swelling has gone down and she’s behaving a lot more like herself.
 
Ella normally has such a good temperament that it’s very obvious when she’s not comfortable. Most of the time she’s very mellow and content, even while the nurses are doing their “hands on”. She only really gets upset if she needs something (i.e. changed, turned, etc). Once you get her comfortable she settles right in.
 
At this moment she’s asleep in mom’s arms. Our girl hasn’t spit up for the last 24 hours, which is good. This is not saying that the reflux isn’t occurring, it’s just positive that she’s keeping her food down.
 
When she was weighed last night, the scale read 8lb 3oz. Looks like she’s gained a little weight since we last posted it.
 
I’m feeling a little better myself. It was nice to escape for a bit over the weekend and we enjoyed the time with our friend Kerri. The fact that Ella’s feeling better helps too.
 
Taking a look at how far we’ve come really makes me appreciate the progress she has made. Even with her minor setbacks, overall our girl is doing well.
 
With that said, we still have a ways to go, and we don’t even know if we’ll be home for Christmas. What we do know is that our Heavenly Father is in complete control and we are trusting in His perfect timing.
 
Baby PAR is doing well today. They had to put mittens on him so he would stop pulling out his red rubber tube.
 
We’ve not talked to Chris about Jonathan today, so we’re not exactly sure how he’s doing. We do know that he’s been through a lot in the last 48 hours, and for this reason we continue to pray earnestly for him.
 
We praise you Lord for blessing us so much. Thank you for the community that has built up around this little girl. We pray that you will continue to be glorified through all the circumstances that surround us.
 
Lord, we lift up baby Jonathan, baby PAR, and Ella Renae. We pray that they’ll grow stronger in the coming days, and that you will heal their bodies. We pray for continued progress for PAR, overall stability for Jonathan, and a positive outcome related to Ella’s reflux. Bless these babies Lord. In Jesus name I pray, Amen.
 

One Hundred and Ten Days. Even seems long spelled out.

The last couple days have been a bit more difficult for me. It so hard to see my baby girl when she’s not comfortable. Her nose is so raw from the CPAP cannulas that she fights to keep it on sometimes.

Ella’s nose will tend to get real snotty too, which reduces the effectiveness of the CPAP. Suctioning resolves the issue temporarily, but it also make the problem worse too. The more she’s suctioned, the more secretions occur…a vicious cycle.

I didn’t go see my girl on Friday night. I let Kerri and Tina spend time with her and I escaped into a movie. I missed seeing my girl, but I needed a break.

We all went to see Ella today though and she looked ok. Tina and I both took turns reading her a story, and the Bun was enjoying it until the CPAP started bugging her. Her pulse and breaths per minute have been elevated while her saturations have been in the mid-90s, an indication of her discomfort overall.

We ran into Dr. Kays today. He tries to give himself a break on the weekends unless he’s on call, but there are some other critical CDH babies that he’s committed to taking care of which is why he was in the NICU.

We talked to him about Ella’s current state and asked his opinion about where we stand. He indicated that he would have a better feel of our direction if her stats were solid, but because she’s not doing as good as we would like at the moment, he’s not sure.

Dr. Kays thinks that Ella’s current not-so-great state might be caused by her increase in fluids (not chest fluid, but too many fluids in her blood). So, he wrote an order to increase her lasix (a diuretic). The fact that that our girl is not throwing up so much is a good thing, but she could also be refluxing without throwing up.

To confirm this, he’s ordered that an upper GI be performed next Tuesday. Hopefully we’ll get a good picture that indicates the severity of Ella’s reflux.

Something that Dr. Kays recommended is that we consider pro-actively performing a surgical procedure to minimize Ella’s reflux. There is only a small chance that Ella is not going to have any reflux issues, almost all CDH babies do. Considering the severity of Ella’s CDH, the fact that she’s been there 110 days, and that her reflux may be directly impacting her lungs from getting better, are reasons he is recommending this procedure.

Another major concern is Ella possibly aspirating her stomach acid during a bout of reflux. This could have devastating affects on our girls lungs, and this operation would greatly minimize that risk.

We’ve not committed to anything yet, and we’ll look to the results of the upper GI to see where we stand. Ultimately, we just want to do what is best for Ella. We just need to pray and ask for wisdom before we make any decisions.

I started my day by reading the book of James. The Lord really spoke to my heart with the following verses:

James 1:2-4
2 Dear brothers and sisters,[a] when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Praise the Lord for his living Word. Thank you for your continued support in prayer.

God Bless.

Ella had a bit of a rough day today. She was very fussy this morning, so much so that she required a dose of versed to calm her down. They think she might be having withdrawals from having the sedative meds discontinued the other day, but we’re not sure.

Her stats haven’t been as good either, plus her face looks a bit more puffy. We hope that it’s not a sign of anything major, and I don’t think it is. The next couple days will be telling though.

On a positive note, her chest x-ray looks a lot better then last Saturday, so her lungs have expanded more from being on CPAP.

At this point, we’re probably looking at another week or two on CPAP. Once again, as much as we don’t like it, we know it’s best for our girl.

We’ve had a lot of good days over the last few weeks, so we need to take the not so good ones in stride. We pray for Ella to improve over the coming days so that she can once again go to the regular nose cannulas.

On another note, as I write this next to Ella’s crib (11:45pm EST), I’m sitting about 25 feet away from Dr. Kays doing baby Par’s repair surgery. It is absolutely mind blowing to know what is happening so close to us. Dr. Kays is in his element, saving this baby boys life! What an awesome gift from God that he’s been given.

Please pray for baby Par’s stability through this procedure as well as his recovery in the coming days. We thank God that Liz and Rusty are here, giving their boy the best chance they can.

Heavenly Father, as I write this I know You are here. You are omnipresent, everywhere, all the time. You are sovereign and in complete control of Par’s surgery. Lord, guide Dr. Kays hands as well as the other doctors. We pray for a surgery with no complications and for a stable recovery.

Lord Jesus, thank you for being our hope. We ask for patience during this time, and we fully trust in You. In your name we pray. Amen.

If you would like to keep up with baby Par’s progress, you can visit Liz and Rusty’s blog here: http://babyrich07.blogspot.com/

(Nathan Greene – Chief of the Medical Staff)

Ella Renae is doing well. She has been real smiley tonight for mom and I, although I couldn’t catch one in a picture. You think I would considering the 50-100 photos we take every night. =)

Nurse Jessica gave our girl a bath this evening and threw in a little baby massage to top it off. It’s pretty cute too because Ella gets pretty smiley when Jessica is around. I think our girl knows where her bread is buttered.

At this moment, Ella is in mom’s arms, looking into her eyes. Such a wonderful gift to have this time with her.

Her oxygen saturation looks good, vitals are within range, and her temperature was fine throughout the day. The one thing Ella has been doing a bit more of today is spitting up. It’s not at a level that is cause for major concern, but we’ll need to watch it.

Please pray that Ella’s reflux will be kept to a minimum and that her lungs will grow stronger in the coming days, allowing her to come off CPAP.

Also pray for baby Par. He did quite a little jig today on the ECMO line but once again, and in the nick of time, Dr. Kays decided against it.

Lord, we lift up these beautiful children to you, and we trust in your purpose and a plan. Thank you for blessing us with these precious babies. Please continue to strengthen Ella’s lungs and minimize her reflux. Give Par the strength and stability to avoid going on ECMO.

We will continue to praise you through all these circumstances, and fully surrender to your will for our lives. Impress upon our hearts the direction you would have us go, so that we may be obedient to you. We ask these things in the name of the Father, the Son, and the Holy Spirit. Amen.

Ok…so we didn’t think our girl could really get much cuter, but I think this picture says it all.

Ella is doing great tonight. She is finally off of any kind of mechanical ventilation. Just a nice flow of oxygen through the cannulas. Holding her is so much easier now without having the CPAP attached.

She’s still doing well with the full feeds going into her stomach, and the weening of her other meds continue.

Dr. Kays has his hands full these days with a total of 8 CDH babies in the level 3 NICU. This is the most CDH babies in this nursery at one time.

While we continue to pray for our sweet Ella’s success, we would also request prayer for Rusty, Liz, and baby Par (Phillip Andrew). I’m sitting a couple rooms over from him now, Rusty is sitting quietly next to him.

Par is stable at the moment, but he’s at a critical point of possibly going on ECMO. Please pray that Par will not require the use of ECMO and that he would remain stable and strong through the night.

Heavenly Father, we come before your throne of grace with hearts of reverence. Thank you Lord for the gift of Par, and the blessing he is. We thank you Jesus, that you are here, right now, right next to him. Lord we ask for strength and stability for this child, and for peace for Liz and Rusty. I pray that they continue to draw close to You during this time, and that this experience will be an incredible blessing and will bring glory to Your name.

We ask in the name of our Savior, Jesus Christ. Amen.

One hundred and one days! Ella has been tracking so well these days and looking cute as ever too!

We spoke to Dr. Kays this afternoon about our girl. He’s please with her progress and said that she would be stepping down to the regular oxygen cannulas tomorrow. Yay! No more CPAP, just a controlled flow of oxygen.

Some more good news…Ella has not spit up at all since we last posted! This is a very good sign in that she’s keeping her food down and it’s going through her body properly.

There’s still another (very large) related hurdle though, and that’s bottle feeding itself. Ella has never had food (i.e. breast milk, formula) given orally.

CDH babies typically have issues related to this and the fact that our girl has gone on so long without this experience only increases the likelihood that the problem will be severe.

We’re not quite at this step yet but we expect it to be a challenging once were there.

On another note of praise, Phillip Andrew was born today! This is the boy of Liz and Rusty, the couple from Birmingham AL, who we met here in Gainesville.

We have been praying for God’s timing in the situation because you see, Dr. Kays has been out of town for the last week! When we went out to dinner with our friends the other night, we didn’t want to alert them to this fact, causing more stress for Liz and Rusty, so we didn’t say a word.

Instead, we prayed and trusted that the Lord’s perfect timing would play out in their lives. Dr. Kays was back in town last night, and they delivered this afternoon. PRAISE GOD FOR HIS SOVEREIGNTY!!

Philip Andrew is stable and doing well, and so is the rest of the family.

Please join us in prayer for Phillip Andrew and his entire family. Pray that Rusty and Liz will continue to look to our Lord for peace, and that their boy will remain stable and grow strong.

Please also pray for our baby girl and her big step tomorrow coming off CPAP.

Praising our Lord for where we are, and for the road ahead.

God Bless

Ella Renae continues on her steady track forward. She’s taking her time, but she’s looking better every day.

As I type this, she is resting her her mother’s arms. Fidgeting here and there, falling asleep, waking up, looking at mom. So wonderful to have this peaceful time with her.

And it remains peaceful, except for the times when we have to adjust the CPAP cannulas. What a pain the tuchas! They just tend to work their way out of Ella’s nose while she’s awake and moving.

Overall though, Ella has really tolerated CPAP. We’re looking forward to stepping down to the regular oxygen cannulas, something that can’t happen soon enough for us. =)

Ella’s meds continue to be weaned too. In fact, the Octreotide has been DC’d today. No other major changes though on this front.

On another note, Tina and I had a great time with some new friends last night. Liz, Rusty, and Barbara (Liz’s mom) joined us for dinner at a local pizza place. Liz is about to have a baby boy with CDH here at Shands, and we thank our Lord for the opportunity to share some of our experiences with them.

Please pray for God’s perfect timing in their son’s birth as well as patience, strength, and peace for Liz, Rusty, and their entire family. We also thank you for your steadfast prayer for our baby girl’s continued progress.

I’ll leave you with this thought the Lord has been affirming in my heart over the last few days:

God’s truth never changes, but our lives are changed in every way when we embrace it.

Oh the sweet sound of our baby’s cry!

Ella was extubated at 9:15am EST this morning. Dr. Kays indicated that he didn’t expect her to make much of any noise at first because of her vocal cords being so separated. To our surprise, including Dr. Kays, Ella did in fact cry…and continues to do so as I write this =).

At the moment nurse Andrea and Tina are doing what they can to console her. Her saturations look good, hovering around 100%, but she’s still trying to get used to this contraption around her head and up her nose. Fortunately, the cannula’s they are using are not very long, about a centimeter.

She has moments where she will calm down, but then starts fussing again. This is pretty typical with a baby on CPAP; they just don’t like it.

We hope that she’ll get used to it enough to settle down and sleep. They’re trying a binky (pacifier) right now, but it isn’t helping. Also, trying various positions to try to get her comfortable: right side, left side and now she’s on her back.

The blood gas they just took at 10:45am was not the best: pH=7.14, cO2=60, pO2=80. She has been breathing quite heavy for the last hour at 77% oxygen support, but we hope she can calm down.

Nurse Andrea just gave her some versed (sedation medicine) to see if that will do the trick.

Praising God for this huge step and continue to pray for Ella’s forward progress, and for improved saturations. They will continue to monitor her and take blood gases throughout the day, to see if she can remain on CPAP.

p.s. If anyone has heard from Tina’s Mom or Jack within the last 18 hours, please let us know. As of noon yesterday, they were stuck in the middle of the fires at their house in San Diego. We heard that they were able to fight them off with the well water they had until the power went out and the pump stopped. Then, they resorted to shoveling dirt on the fires to protect their house. From what we could tell from the news reports, the fire looks to have burned all around them. Please join us in praying for their safety.

UPDATE (2:30pm EST) by Tina: Once we left the hospital this morning, Ella remained fussy for a bit. Nurse Andrea suctioned her mouth and nose. Once she did that, Ella could breathe better and fell right asleep. Maybe that is what she was trying to communicate to us this morning! Anyway, sleeping for her is really good right now – – it keeps her calm and when she is calm, she breathes better.

Ella remained asleep for about 1.5 hours, then she just woke up and calmly looked around. They took another blood gas and it was a little bit improved, ph=7.21, cO2=65, pO2=120. Dr. Kays says that these blood gases are acceptable for her right now and it is a good sign that she is slowly moving in the right direction. As I type this, she is sleeping and her saturations are 100/100.

Nurse Andrea thinks she is doing really well and feels that she just needed some time to figure out this breathing thing on her own with the nose cannula.

Psalm 28:6
6 Praise be to the LORD,
for he has heard my cry for mercy.

Thank you for continuing to pray for sweet Ella. In addition, thank you for lifting up my Mom and Jack. My heart is heavy and I am very concerned for them right now. But as the last 13 weeks has certainly taught us, it is wise to rest in Him during these times.

Philippians 4:6
6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

UPDATE (3:30pm EST) by Josh: Uncle Cliff just sent a text message to my phone letting me know that: “The fire sheriff said the area already burned (where Mary and Jack live) so they should be OK. He will go check on them soon and call (aunt) Diane back.” This sounds like good news because the last update, from them yesterday morning, indicated that the area around their house was already scorched, but they were OK.

UPDATE (6:30pm EST) by Josh: Mary and Jack are ok. Uncle Cliff just talked to Mary. Click here to see the email with the details.