Nov
13
    
Posted (jooosh) in All Posts on November-13-2007

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.



 
Nov
14
    
Posted (Tina) in All Posts on November-14-2007


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.



 
Nov
15
    
Posted (jooosh) in All Posts on November-15-2007


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.



 
Nov
16
    
Posted (jooosh) in All Posts on November-16-2007


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



 
Nov
17
    
Posted (Tina) in All Posts on November-17-2007

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.



 
Nov
18
    
Posted (jooosh) in All Posts on November-18-2007


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.



 
Nov
19
    
Posted (Tina) in All Posts on November-19-2007


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.



 
Nov
20
    
Posted (jooosh) in All Posts on November-20-2007

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.



 
Nov
21
    
Posted (Tina) in All Posts on November-21-2007

Ella has stabilized since being re-intubated yesterday morning – praise God!

Most of the day yesterday, she was sedated. They tried to place another picc line in her arm, but it was unsuccessful.

Also, the IV line in her foot came out again this morning. So, the nurse had to locate a vein to place another temporary IV. Apparently, the largest visible vein was on her head, thus the bandage.

She had a chest x-ray done this morning, and it does look improved but she still has a long way to go. They did take a blood gas and it was good – ph of 7.54, cO2=47, pO2=71. Based on these results, they did make some adjustments to the pressure on the ventilator.

When Dr. Kays visited Ella this morning, he decided he would take Ella to the OR to place a central line today since they need a more permanent solution for access. After looking at her recent stats and pacing around for a bit, he decided that since he was taking her to the operating room, he would do the nissen surgery and g-tube today. Although the chest x-ray isn’t quite as good as he would like, she is stable enough overall. This came as quite a surprise.

We are told that the surgery will be taking place around 1 or 2pm EST. As always, we will keep you updated with information as soon as it is available.

When I arrived to visit Ella this morning, she was awake and looked comfortable. Her beautiful blue eyes were staring around and her color was good.

She has not required any additional sedation since yesterday when they tried to place the picc line in her arm. The fact that she has not required extra sedation is a good sign: as her parents, we know that this means that she must be feeling better.

As I finish this post, she has peacefully fallen asleep.

Looking around at Ella’s roommates, Par continues to make strides forward – – please continue to pray for his journey.

Also, I had a chance to talk to Jonathan’s mom this morning. She was in the waiting room because they are switching out the ECMO circuit. This is the 2nd time they have switched it out. Right now, Jonathan’s liver and kidney are not performing well. Both of these need to improve before Dr. Kays will discuss the repair surgery. Keep in mind that Jonathan was born on 10/17 and has not had repair surgery yet – – he has not been stable enough. Please pray for Jonathan and his family.

And, please pray for Ella and her surgery. Pray that the Lord would keep her strong and stable throughout the procedure. Finally, Josh and I have not been feeling 100% health-wise the past few days. So, please pray for our health to return – – not quite as much fun wearing masks in the NICU and taking a risk of infecting Ella!

Thanks to all for your love and support during this time.

UPDATE 2:30PM EST (by Josh): Ella was just wheeled off to surgery. Please continue to pray.

Father, we lift up our baby girl to you. We know you are there with her right now. I pray for the skilled surgeons hands, Dr. Kays, Dr. Paddock, and the entire staff. Let you presence be sensed, and let your will be done. We praise you Lord for bringing us this far, and that we even have the opportunity for this procedure to be performed. You are a loving and gracious God, and we know that nothing is out of your control. Thank you Jesus for Ella Renae. Amen.

UPDATE 5:10PM EST (by Tina): I am in the waiting room of the NICU. Brenda, someone who is assisting Dr. Kays, just called the front desk and asked to speak with me. They just completed the central line and now they are beginning to work on Ella’s belly. Ella is doing fine – – she just wanted to call and let us know that everything was progressing along. Thanks for all the support and prayers.

Psalm 92:1-5
1 It is good to praise the LORD
and make music to your name, O Most High,
2 to proclaim your love in the morning
and your faithfulness at night,

3 to the music of the ten-stringed lyre
and the melody of the harp.

4 For you make me glad by your deeds, O LORD;
I sing for joy at the works of your hands.

5 How great are your works, O LORD,
how profound your thoughts!

UPDATE 7:00PM EST (by Tina): Dr. Kays just called up to the NICU wait room. He let me know that Ella behaved herself during the entire procedure and that they were able to get everything completed. They are on their way to bring Ella back upstairs to the NICU. Although he was short and did not give any details, at least we know that Ella remained stable and that the procedure is finished. I hope to see Dr. Kays a bit later to see if I can get some more information. Thanks for the prayers.



 
Nov
22
    
Posted (Tina) in All Posts on November-22-2007

I had a chance to talk to Dr. Kays post-surgery last night.

He said that Ella did well through the procedure. First, they placed a central line. They tried through her right leg and it wasn’t working, so they switched to the left leg. From there, it was threaded sub-cutaneously up to her right side near her chest.

Normally, they place a central line through the neck area, but based on Ella’s history of having a collapsed superior vena cava and all the work she has had done in the chest region, they wanted to avoid that area. Also, since the surgical repair was on the left side, they threaded it over to her right side to remain out of the way.

Dr. Kays hopes to use the central line as much as they need to over the next several days. It has risk of infection just like any lines they place in Ella, so he does not want to see it in there any longer than 2 weeks.

The nissen surgery went well. Since Dr. Kays could not find a piece of paper, he began drawing a visual of the procedure on his scrubs! (Here is a great page that I found if you want to read more about the overall reflux issue, nissen procedure and g-tube). They took the upper section of her stomach and tied it around the lower part of her esophagus. This creates a drawstring-like effect. When Ella’s stomach becomes full, it will tighten and not allow for reflux. Also, he noted that she now has a “cute button” (he was referring to her g-tube).

If you remember from Ella’s repair surgery, her appendix was relocated to her left side beneath her tummy. Apparently, it is common to remove the appendix during a nissen procedure. It is not something that they look for or search for, but when it is apparent and seems like it might provide future complications, they remove it. So, just like her parents, Ella no longer has her appendix!

Dr. Kays was able to remove the gortex patch that lined Ella’s abdominal muscles (note: this is NOT her diaphragm gortex patch. Ella’s tummy was going to be too tight when he moved all her organs back into her belly during the repair surgery, so he had to line her abdominal muscles with an additional gortex patch when he closed. Since she is bigger, he was able to remove that extra patch). That was a positive. He did note that her liver had adhered to the patch slightly, but he was able to safely pull it away.

Ella will be off of food for 3 days (yep, no food for her first Thanksgiving). The first time they will try food through the g-tube will be Saturday. From there, they will give small amounts and build her back-up to full feeds through the g-tube.

He ordered for Ella to be given steroids 2x per day for the next 5 days. This should help her healing overall, but especially for her lungs to gain strength.

She was given a one-time dose of versed (sedation) yesterday for the surgical procedure as well as an increased amount of fentanyl (pain meds). The fentanyl was bumped slightly to help with her healing over the next several days. Once she has stabilized, they will begin to slowly wean it.

Since she was sedated last night, he bumped the ventilator to 40 breaths per minute at 50% oxygen.

The plan is to get another chest x-ray on Friday and see how her lungs have progressed. As soon as possible, he wants to extubate her and put her back on CPAP.

Dr. Kays did mention that we are not sure how CPAP and the nissen procedure will work together. Most babies have the nissen procedure when their lungs are in a better state and they do not require CPAP. So he warned that we are going into a bit of uncharted territory. The potential side effect is that since the CPAP is blowing continuous pressure into her lungs, that part of the air can also go into her tummy. Now with the nissen procedure complete, she will not be able to get rid of the air as easily. This might cause her additional discomfort.

Also with the nissen, he mentioned that Ella might do something called “retching”. If her belly gets too full, her body might try to spit up, but she will not be able to. Again, just another side effect of the procedure. As we discussed before though, the benefit is no heartburn/reflux symptoms for Ella as well as no aspirating into her lungs!

We are hopeful that this surgery not only solved her reflux issue, but will play a big part in helping her lungs to get stronger. Dr. Kays thinks that the reflux was contributing to the issues she has had with her lungs recently.

We pray that this is the last major surgery for Ella. She has been through so much already in her short life. Please pray that her body will heal well and that when they begin to feed her via the g-tube on Saturday, she will tolerate it. Also, please pray for good chest x-rays over the next few days. Already it has been nice to have her off CPAP because her nose is getting a much needed break. However, we want her to get strong enough to move to the next step.

Thanks for all the love and support for Ella and her roommates. On this day of Thanksgiving, we are thankful for these little ones. They are truly a gift from above.

Psalm 107
1 Give thanks to the LORD, for he is good;
his love endures forever.

Psalm 111
1 Praise the LORD.
I will extol the LORD with all my heart
in the council of the upright and in the assembly.

2 Great are the works of the LORD;
they are pondered by all who delight in them.

3 Glorious and majestic are his deeds,
and his righteousness endures forever.

4 He has caused his wonders to be remembered;
the LORD is gracious and compassionate.