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 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 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.

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.

Ella looks like she is feeling better than yesterday, but you wouldn’t know it by her stats.
 
Actually at 5pm, Dr. Kays decided to increase her oxygen assistance to 45% and left the CPAP pressure at 5. Even when she is asleep, her saturations are only mid-90s.
 
Yet just a few days ago, she was at 35% oxygen at a pressure of 5 and was consistently having saturations pegged at 100.
 
We’re not sure what to think. For some reason, her progress has slowed and we have taken a few steps back the past few days.
 
Aside from CPAP change, it was also a big day because they moved Ella out from her private room and into the main area. She is over near the window which will allow her to distinguish light from dark. And since Ella tends to be social, we are hoping that being out in a main traffic area encourages more nurses to stop and interact with her.
 
Yes, although we still have some wires to contend with, we finally get to dress Ella. They want us to stick to gowns, onesies and outfits that snap down the front. Now, she can show off her fashionista side!
 
Ella had a visitor tonight. Kerri, a friend from Colorado, came out to meet her and hang out with us over the weekend. Ella definitely appreciated the attention, as she gave lots of grins!
 
Please continue to pray that the Lord would strengthen her lungs and that whatever set backs she is having, that it is not a sign of anything major. We so desire to see her gain strength and graduate from CPAP! Go Ella, No CPAP, Go Ella, No CPAP!
 
Good night to all.

Today was uneventful for Ella which is good.

Her CPAP remains at a pressure of 5 and at 35% oxygen.

We have not talked to Dr. Kays in several days so we are not sure what the plan is for how long Ella will remain on CPAP. Our intuition is that she needs a bit longer. When she is asleep, her saturations are 100 and stats look great. When she is awake and alert, she seems like she works a bit harder to breathe and her saturations are mid-90s. To us, this is a sign that she needs more time to gain strength.

She was awake a lot of the day and is still taking to her binky. She has spit up once today which is not bad and means that she is still tolerating the meds and formula going directly into her belly.

There is talk about possibly moving Ella out of her private room, out into the open area. The reason is two-fold: to get us more mentally prepared for moving to the NICU 2, which is very different and jam packed with rows of babies. Also, to give Ella more things to look at during the day and more interaction from people passing by (this is more appropriate for her developmentally at this stage). We would love to keep the private room, but understand that this could happen any day.

We heard that the renal department came by to assess her kidneys and did not find anything that they are concerned about right now – – praise God.

The occupational therapist should be visiting Ella sometime this week to do an assessment of where she is developmentally and what type of therapies Ella might need when she returns home. Also, the occupational therapist’s goal is to train us to take care of Ella, from therapies, feedings, medicines, developmental challenges, physical therapy, etc. We are looking forward to what she has to say and working with her over the next several weeks.

Par has been successful at remaining off of ECMO. If he can remain stable over the next couple of days, Dr. Kays might look to do his repair surgery. Please continue to keep him in your prayers.

Also, please pray for Ella to gain strength over the next several days. Her nose is a bit raw and irritated from the CPAP. So, please pray for her to continue to tolerate the CPAP as she has been doing.

Finally, please pray for Dr. Kays to have wisdom on when to take her off CPAP. We would prefer for Ella to stay on CPAP as long as needed to permanently move to the nose cannula rather than go back and forth, since it sets Ella back on her progress.

Thanks for joining us on our knees throughout this time.

Yes, it is hard to believe that it has been 15 weeks of the NICU 3. But, Ella is doing well today and continues to gain strength.

Another milestone: Nurse Andrea was able to discontinue the versed (sedative medicine). There is only one more drip, fetanyl, that is still in the process of weaning.

Ella’s CPAP is at a pressure of 5 and she is at 35% oxygen. Her saturations have maintained in the 95-100 range throughout the day. Also, she has only spit up once which is good.

Right now, she has fallen asleep in Daddy’s arms, peacefully sucking her binky.

We had lunch today with Jordan Brantley (below), which was one of Ella’s roommates. She was born on August 1, 2007 and went home on September 6th. She came to Gainesville today for her 2 month check-up with Dr. Kays and she looks great! It was so fun to see another CDH baby girl the same age as Ella doing so well.

Another praise: Par has remained off ECMO!

Lord, we just thank you for these babies. We thank you for the blessing and enrichment they bring to our lives.

We ask for your continued strength for the journey. We know that you have a plan and a purpose.

Well, Ella had to be placed back on CPAP early this morning.

Her saturations declined and she was having trouble breathing. The aveoli in her lungs were collapsing, making it hard for her to breathe.

This simply means that she is not ready yet and needs more time to gain strength.

Her CPAP is set back to a pressure of 6 and the oxygen support at 50%.

Right now, she is sleeping sound on her belly and her saturations are 100.

We praise God for our baby girl and know that His timing is perfect in all of the details.

On another note of praise, we have looked over at Par and can see that he is not on ECMO. Please keep praying for Ella and her “roommates” as well as Dr. Kays and staff.

Well, Ella couldn’t dress up too much for her first Halloween, but she is one of the most spirited Halloween babies in the NICU.

Ella maintained so well yesterday that they weaned her CPAP again. The pressure is still on 6, but they reduced the oxygen slowly throughout the day until it reached 35% last night at 7:30pm.

She did have one hang up today so far. Her NJ line, which goes directly into her intestines, clogged up. This is the tube they use to feed Ella the Portagen formula. They tried to unclog it, but that was unsuccessful. Then, they removed the line and tried to re-insert a new line. That was not successful either.

In order to make sure she gets her formula timely, they are going to transport her down to radiology. Using the equipment down there, they can be precise with placing a new NJ line. Please pray for a successful procedure.

We got a bit of a spook this morning. The phone rang and it was the credit card company, asking to verify activity on our account. As I listened to the laundry list of charges (all from yesterday), it was easy to see that we had a fraud situation on our hands. They went to Macy’s, Circuit City, Office Max, etc. (all from stores in Fresno, CA).

All of this on a day that is feeling weary for me and Josh.

Thanks for your continued prayers for Josh and his focus at work. Although he worked through the night, he was not able to meet his deadline. He is steadfastly working away as I update all of you, trying to complete his project. For me, it is simply hard to work each day and not be able to spend time with Ella. Although she is down the street 20 minutes away, she is not in a nearby room. That makes it tough.

It is hard to believe that we are on Day 100. As Josh and I had a bible study this morning, it was amazing to look back and reflect on all God has done and how He continues to guide us and protect us. We are so thankful for this new little person that He has introduced into our life. We just can’t imagine it any other way.

Although we “feel” weary, we hold onto the truth in our spirits…that He is ever so close watching over every detail and orchestrating His perfect plan.

UPDATE (4:30PM EST): We just received a call from the hospital. They transported Ella down to the radiology department. To do that, they had to take her off of the CPAP ventilator and place her on a regular nose cannula with oxygen support. She did well during the transition and procedure.

Unfortunately, they were not able to replace the line into her pyloric valve. Apparently, her liver is so enlarged from the pulmonary hypertension, that is has affected the anatomy and placement of the organs in her abdominal cavity. For now, they have continued to feed her through her NG line into her stomach. Dr. Kays will be back at the hospital in the morning and they will consult with him on the next steps.

In the meantime, it is encouraging that they have been feeding directly into her stomach since 4am and she has only spit up once. They have continued to give her medicine for reflux and we are just hoping and praying that she can continue to accept the Portagen formula directly into her stomach.

Ella continues to do well today.

Her CPAP is still at a pressure of 6, but her oxygen was weaned to 45% last night. Slow and steady progress!

Also, the full CBC results came back and Ella does not have an infection – Praise God! We are beginning to think that these intermittent fevers are not of concern, but that she just runs warm like her Daddy!

Yesterday, they did a test for Ella’s electrolytes. As a result of the tests, they made some adjustments to her sodium and potassium (they were a bit higher than they like to see) and will check it again later in the week.

Since the UAC line was removed from her belly, they have noted that Ella’s blood pressure is a bit elevated. Her systolic pressure has been higher than they would like to see (over 100, even when sleeping). I was told that this type of hypertension is a common side effect for babies that have been on ECMO and that if it does continue to climb, they will likely treat with blood pressure medication.

Today, they took an abdominal ultrasound to see how things look and should have the results in 24 hours or so. They want to make sure that since the UAC line was in for so long, that there is not a blood clot somewhere that is causing her elevated blood pressure.

Since they are trying to be proactive, there is also an order for the Renal Department to also come and visit Ella for an assessment (check her kidneys; a side effect of any mishap in the kidneys is higher blood pressure).

Please join us in praying that there is nothing wrong with Ella’s kidneys and/or anything related to her slightly elevated blood pressure.

Also, a special prayer request for Josh. He has been consumed by a special project at work, so he has put in extra hours at work this past weekend and each evening. Therefore, he has not gone to visit Ella. Please pray for the ability to meet his deadline and extra sharp focus for the task at hand.

We thank all of you for your continued thoughts and prayers.