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.

My heart is heavy.

I spent all day with sweet Ella. From the moment I arrived, I could tell that she was still not feeling well. As I held her in my arms, her breathing was heavy and strained. She seemed a bit more puffy than usual and with the slightest bit of discomfort, her agitation went off the deep end.

Holding her in my arms seemed to work for about 2 hours. From there, she woke up feeling worse and would not calm down. Earlier, I expressed that I wanted to make sure and speak to Dr. Kays at some point today. When the nurse practitioner realized that Ella was worsening throughout the day, she paged Dr. Kays because I think she was not sure what to do with her.

The chest x-ray this morning showed that Ella’s left lung has collapsed. This explains what happened last night and why her breathing was so labored throughout the day.

When Dr. Kays showed up, we discussed all the changes that had taken place in Ella over the past few days: the sprinting technique, the picc line falling out, receiving morphine orally, her fussiness, etc.

After discussion, he decided to request that a new picc line be inserted. He ordered for her feedings to stop immediately and for her to receive lasix via the new picc line. Additionally, he ordered some blood labs to be completed. He wants her feedings to stop because he thinks that she might be aspirating a small amount of spit up into her lungs each time she refluxes. He wants the picc line re-inserted because he noticed that her urine output has decreased since she started taking lasix orally on Thursday. Finally, he wants to leave her on CPAP with a pressure of 6 at 50% oxygen. If she does not improve overnight, she may need to be re-intubated.

We discussed the nissen surgery and g-tube. His original plan was to perform it on Wednesday, but he needs her to be healthy and stable. If she is not well enough, he will look to perform the surgery next Monday or Tuesday.

I asked if the nissen surgery might cause fluid build-up in the chest again. He noted that prior nissen procedures have not had that result, but there is always a chance.

Also, I asked him about the gortex patch that she has under her repair scar along her abdominal muscles. If he is going to use the same place for the incision, would he be removing the additional patch? He confirmed that his plan is to remove the extra gortex patch along her abdominal muscles.

Although this is another low point for Ella, Dr. Kays still feels confident that she can come out of it. I did catch him rubbing his temples and noting that she is a challenge. That’s my girl!

My heart is heavy because it is so hard to see your baby take small steps forward, only to pause and take several steps back. She has been through so much in her short little life. It is so hard to watch your baby in pain and not be able to take any of it away. It is a helpless feeling.

I’m sure being a new parent is frightening experience for everyone. However, I found myself feeling completely inadequate today. Although I know that God chose me to be Ella’s mother, I found myself asking Him,”Why me?” I don’t feel strong enough Lord”…Fortunately, I was still and heard His voice amidst the beeps of the pumps and the CPAP. In that moment, He ministered to my heart…His plan is perfect…that He did choose me. Also, He confirmed that I don’t have the strength…but that I have to rely on Him for strength…continually…each day.

When I left Ella, she looked more comfortable. They gave her a round of versed (sedation) to put in the picc line. Unfortunately, they were not able to get it in and instead have a temporary IV in her food to administer the meds.

Please pray for Ella – – she is undergoing so much discomfort. Please pray that her left lung will re-open and expand, so she can get over this hump to a more stable place. Pray that she will gain enough strength and that the Lord would prepare her body for the nissen surgery.

We know that Par is doing well – Praise God. Please continue to pray for his recovery. We have not had the opportunity to run into Jonathan’s parents, but see that he is still on ECMO. Please pray for him too.

Finally, please pray for me and Josh. This is so tough and we are weary…we are tired.

Thanks for all the support.

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 was a bit more irritable today. We think it might be related to discontinuing fentanyl. Although they have been giving her small doses of morphine to try and help make the transition less drastic, it is still a change for Ella.
 
We were at the hospital for a total of 8 hours today. We probably only saw her awake for 1 hour, albeit intermittently.
 
The nurse from the morning shift said that Dr. Kays has seen the result of her upper GI and is planning to put her on the schedule for surgery this upcoming week. Now that we know her reflux is on the severe side and that she is experiencing pain, we feel that it is the best move for Ella to have the nissen surgery. We would like to see it happen sooner versus later.
 
When we prayed, we asked the Lord for a specific sign of which direction to go with the surgery. Although we did not want her reflux to be severe, I am happy that God answered our prayers for a clear answer/confirmation.
 
Matthew 7:7
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.
 
We know already that it is going to be tremendously difficult to watch her go through another surgery. Just think: her scar will be fresh again plus they have to intubate her for the surgery and a short time afterwards. Initialy, her progress is likely to get worse. Please pray that we can stand strong in our faith, knowing that He is in control of all the details of this journey.
 
Thanks for all the continued thoughts and prayers for sweet Ella and her roommates, Jonathan and Par. We pray for healing – – complete and total healing.

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

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.

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

Ella had a great day.

About 1pm, they stopped her continuous feedings to get her prepared for the upper GI. This left her stomach empty and ready for the test. From what we understand, they took her off CPAP and placed her on the nose cannulas temporarily for the transport down to radiology. When they conduct the test, they place a contrast dye through the feeding tube into her stomach and watch the fluid make its way through her system. From there, they can detect if she has reflux as well as the severity of the condition.

Nurse Marla took her down for the procedure and said that Ella remained calm and her stats maintained throughout the procedure. This is positive because it means that she did not require any sedation. We should hear the results tomorrow or Friday at the latest. Again, we are really hoping that her reflux is mild.

The physical therapist came by and did some hands on work with Ella this morning. We were told that Ella really enjoyed the time. By the end of the session, she was on her belly and was so relaxed that she fell asleep right afterwards. One of the biggest challenges is that her muscles are so stiff and so tense because she has not had the opportunity for movement. The physical therapist helps her to gain strength and flexibility in her muscles and noted that when Ella gets relaxed enough to fall asleep at the end of her session, it is a really good sign. It means that after a few times, her body will “memorize” the experience, making it easier for her to learn to relax the muscles more often. The PT is planning to come by and work with Ella 3x per week.

Another positive step forward today: every 6 hours, they are going to switch her between the CPAP and a nose cannula with oxygen support (they call this “sprinting”). If you remember last time, they went ahead and took her off CPAP completely and her lungs were not strong enough. Although they don’t do this often, they are going to try this on/off procedure as long as she can maintain her stats. By switching back and forth, they hope to slowly wean her towards only using the nose cannulas with oxygen support.

This is a welcome change – – it makes us feel like she has a goal and we are making forward progress.

Josh and I feel like we might have the beginning stages of the common cold (like maybe our bodies are trying to fight off a cold; we don’t feel 100%). We asked the NICU staff and they recommended to wear masks tonight when visiting Ella. One of the nurses joked that it looks like we are getting ready to do surgery. And a respiratory therapist let us know that Halloween has already come and gone. It is telling that the staff feels the liberty to tease us!

Nurse Jessica is watching Ella tonight…this is the nurse that loves to bathe and massage Ella. As we said before, this usually means lots of grins from our baby girl.

Par seems to be doing really well in his recovery. We heard that Jonathan has not had his repair surgery yet, but that he had to be switched to VA ECMO today. This is the same type of ECMO that Ella was on (the most risky; they permanently tie off the carotid artery). Apparently before, he was on VV ECMO, which is less risky but does not provide quite as much support. We are still praying for Par and Jonathan to continue with their forward progress.

Right now, we are sitting bedside and Ella is sleeping. Her stats look good and she seems really comfortable. A little while ago, it was time for the CPAP to go back in, so Nurse Jessica slipped the CPAP back on. Ella barely opened her eyes and then fell back asleep.

I think that the new spot in the NICU is definitely giving her more interaction. More people stop by and talk to her and she loves it. Along with all the activity comes a whole new level of exhaustion: the past 2 nights she has been so tired and in such a deep sleep!

I am going out of town on a business trip tomorrow. It will be the first 24 hour period without seeing my baby girl. At least I will get to see her virtually along with the rest of you. And although I will be back on Friday evening, it will be hard for me to be away from Daddy and Ella bun.

Since we want to try and get our rest, we are going to let her continue to sleep and hope that we can see her cute smile tomorrow.

Thanks again for the support and prayers from all of you.

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.
 

Yes, we went on a last minute adventure last night and into this afternoon. Our friend, Kerri, has been staying with us and she was dying to see the ocean. I asked one of the nurses and she recommended Anna Maria Island, which is about a 3 hour drive south of Gainesville. We left last night, had a great dinner at a fresh seafood restaurant, slept overnight in the area, woke up and spent the morning on the beach.
 
The beach was just beautiful and the temperature was amazing. It was a nice change of scenery for us and gave us the refresh that we needed.
 
On the way back, we visited Ella. Thankfully, she had a better day.
 
Nurse Andrea tried feeding Ella orally for the first time late afternoon and once again today. She used a slow flow nipple. Ella seemed interested, but after she latched on and sucked a few times, she gagged. Although she did not take too well to it, Nurse Andrea mentioned that many babies don’t even show an interest. We’ll take that as a good sign and continue to try here and there.
 
After the increase in lasix yesterday, Ella’s saturations were high 90’s throughout the day, even hitting 100 every so often. We think the increased dieuretic helped to “dry” her out and thus her lungs are functioning better.
 
Having Kerri visit and see Ella in person brought a new perspective. Although Kerri has been watching the blog all along, the emotional impact was not quite there for her until she walked into the NICU and interacted with Ella.
 
I share that because I think that we are so in the midst of the journey, that we often times forget to step back and realize the intensity of what is going on. Don’t get me wrong, one of us cries almost every day. But we didn’t expect this experience to be so far reaching to others as well.
 
We know with every fiber in our beings, that God is sovereign and has a plan…down to the very last detail.
 
It has been amazing to meet Liz & Rusty Rich (Par’s parents) as well as another CDH father, Chris. His son Jonathan is struggling to hold on. Please pray for him too. And we would not have met these parents had Ella decided to rush through this experience.
 
Lord, we thank you for our little girl. Please continue to heal and strengthen her body. We pray specifically for her reflux issue. Lord, we want a clear answer on which path we need to take. Please give Dr. Kays wisdom and help us to listen to your voice. May the upper GI procedure this week be very telling about which direction we need to go for Ella. Along with Ella, we ask that you strengthen and heal Par and Jonathan. We ask all these things in Your Holy name, Amen.