If you haven’t caught up from yesterday’s posts (morning and evening), you will want to do that!

We checked on Ella this morning. She had a good night – – when she is sleeping and calm, her stats are great. Every once in while, she gets alert and has a temper tantrum and tries to “fight” the ventilator (she had one at 3:30am and one at 10am this morning). When she gets fussy, all of her stats drop WAY down.

The nursing staff is going to try and monitor these episodes and Dr. Kays has given the orders to use a sedation medicine as needed. They would prefer to not have to give her any additional meds, but her episodes can set her back quite a bit and in the moment, they need a way to have her calm down so she can breathe!

They took a blood gas test this morning, and her carbon dioxide was at 45 (that is good but we would like to see it under 40). Her blood saturation level is staying around 99 (Dr. Kays would like to see it pegged at 100). We will see if the sedation medications help her to remain calm throughout the day and if her blood gases remain constant.

Please continue to pray that she can stabilize and remain strong!!! This is literally a wait-and-see game, to see how Ella will respond to all of these new changes.

Thanks again for the prayers and support.

P.S. Today is Ella’s original due date, but she and God had other plans. =)

UPDATE (2:30pm EST): Dr. Kays just called with some good news. Ella is doing what we hoped and prayed for – – making progress in a positive direction. Although the steps are tiny, they are going the right way! Her pO2 levels are 130 today and yesterday they were less than half that number! Her biliruben count is making progress downward and her carbon dioxide is in range. She is still fussing more than they would like, but they have been able to manage this with some sedation.

Before she was removed from ECMO, Dr. Kays scheduled her surgery for Friday (tomorrow). But with her improvement today, he has rescheduled it for Monday at 8am. Obviously, this is can change at any moment, based on Ella’s stats. And he is prepared to do surgery over the weekend, if need be. But for now, our baby girl is doing well.

Go Ella, Go Ella, No ECMO, No ECMO!

Praise you Jesus! Thank you all for your continued prayers! May she continue to take baby steps forward. Amen.

Praise Jesus from whom all blessings flow!
 
Today was a big day and our last update was an indication of how touchy the situation has been. Ella had a lot done today so hang on…there’s a lot to share.
 
We started out with an ECMO flow reduction to 60. Dr. Kays called this morning and said that if they can get a PICC line in they would attempt to remove her from ECMO this afternoon. Inserting a PICC line is not a trivial task and doesn’t always work the first time. Angie (one of the NICU III rock stars) was able to get the PICC line guided in on the first try! THANK YOU FOR THE PRAYERS!!!!
 
After Ella settled down, they started to take her off ECMO. We could not be in the NICU during the procedure. We had to wait, and pray (I think God had us right where He wanted us). Once she was stable, we were able to go in and see her. She looked good, but her stats were a bit unsteady. Dr. Kays was hovering over her like a concerned parent.
 
The one stat you can watch fluctuate moment by moment is her oxygen saturation level. It was hovering around 95. Dr. Kays wants to see a solid 100. But he indicated a 95 or better is ok. Her chest x-ray looks pretty good. Her right lung is looking almost fully inflated and her left lung has inflated a bit. Her heart has also shifted more towards the center of her chest.
 
We talked to him about where things might go from here. He described a few possible scenarios:
 
He indicated that if she makes significant progress, and her stats keep going up and stabilize, he will put off surgery for awhile. It is better to give her lungs more time to grow and for her to get stronger than to push surgery right away. I would have thought that all her organs up in her chest cavity would cause other stresses to the organs, but he indicated that he didn’t think so. The other advantage of waiting on surgery is to allow more of the fluids to be removed from her body, and for her heart and liver to recover.
 
If her stats just maintain without any real progress, he may look to do surgery sooner, hoping to give her lungs even more room.
 
But..
 
If her stats go the wrong direction, he may have to put her back on ECMO. We really don’t want this happen.
 
One of the challenges to this surgery is getting all her guts back into her belly and having enough space to do so. While on ECMO her liver can swell and her heart can too. This poses a problem of too much stuff trying to fit into too small of a space. If they absolutely had to, they could do the surgery in phases, but this is not a desired track. Hopefully we won’t have to go down that path. This is another reason to wait more before doing the surgery so that the swelling that does exist can go down as much as possible.
 
After discussing these things, Dr. Kays went around and tweaked a couple things and stood over her for awhile. He then checked in on a couple other patients and said goodbye to us for the evening.
 
We were there with Angie (the rock star PICC line nurse) and had our eyes on our baby girl. The staff had taken another blood gas and her cO2 (carbon dioxide) gases were high (59). They wanted to see that level around 40. We were also watching her oxygen saturation specifically, desiring to see it go up to 100 as Dr. Kays had hoped. It hovered around 95 for awhile, 96..95..96…95. Up to 96, then back down to 95….then to…94. A bit later 93…94…93, 92…91, 92. Oh man we’re going the wrong way and I can see the concern on Tina’s face. Tina went to go pump and when she got back…
 
90…89…90….88
 
The nurses paged Dr. Kays.
 
Tina indicated that she wasn’t able to express any milk and that we needed to get something to eat. I didn’t really want us to go, and I don’t think she did either. But Tina is trying to juggle taking antibiotics 4 times a day (1 hour before you eat or 3 hours after) while pumping every 3 hours and trying to eat enough to keep her milk production up. We hadn’t had anything to eat since breakfast and it was 2pm…we had to get some food. So, we left our girl in the NICU’s hands and hesitantly went to eat.
 
We were bummed. You know, we wanted instant gratification, but seeing the O2 number drop and the cO2 number increase was just a bit disheartening.
 
We ate our food and after about 30 minutes or so headed back to the NICU. We asked to go back in to see her but we were told we would have to wait for a nurse to come out and get us. So we waited. I only think we waited about 10 minutes but it felt like an hour. Angie came out and told us that she was doing ok, but Dr. Kays wanted her O2 levels to stabilize around 95 before he wanted us coming back in.
 
Tina decided to try and pump again and I waited to hear any news. Within 10 minutes Angie poked her head out and said that her levels were at 95 so it was ok to come in. Tina was still pumping so I headed back without her.
 
Dr. Kays was there and let me know that he had to use a dose of some medication to temporarily paralyze her, forcing her to calm down. He doesn’t like to use this technique unless he has to and it only works well because of the type of oscillating ventilator she’s on.
 
I went over to look at my baby. She was pretty still. Her eyes were twitching a bit. I asked if this was normal and Angie said that the medication was starting to wear off so I might see some movement. I talked to her for a bit and tried to comfort her. She started moving a bit more as time went on but her O2 saturation continued to hover around 95. Thank God.
 
After about 15 more minutes Tina came in. I stepped out of the way to let her get close to Ella. I sat off to the side and talked to another nurse. Tina was trying to comfort Ella when she fussed by putting her hands on her head and feet. This gives babies the impression of a confined space and Ella does pretty well with it. Tina noticed that when Ella calmed down and fell asleep, her stats would go higher.
 
We sat with nurse Angie for a couple hours until the shift change at 7:00pm. Parents are not allowed in the NICU during shift change so Tina and I stepped out for a bit. Tina went to go pump again and I updated the blog. After the shift change I went back in to see my baby girl.
 
I looked up at the O2 saturation level…
 
100
 
I waited…100…I waited three minutes…100. Her oxygen saturation level was pegged at 100 for three minutes! I just stood there…Ella sleeping…Daddy praying and praising our Heavenly Father.
 
For the next 10 minutes, her O2 level never dropped below 97. I told Tina I would come out after 15 mins, so I asked God to give me 100 just for a bit more. Her O2 level went to 100 for another solid minute. Thank you Jesus.
 
I talked to the night shift nurse for a bit. They had just completed another blood gas test. It indicated that her O2 levels were doing well, and her carbon dioxide levels had totally come back to where they should be (39)! This was a great ending to a big day for our little girl.
 
We pray that Ella sleeps well tonight and continues her positive track.
 
Thank you for your continued prayer support. God bless all of you!

The title reflects a chant that Ella’s cousin, Claire, was reciting yesterday,”Go Ella, Go Ella, No ECMO, No ECMO!”

Dr. Kays just called this morning and said that they Ella had another good night. He reduced the ECMO flow to 60 this morning (the lowest setting on the machine) and would like to try and test removing Ella from ECMO this afternoon to see how she responds.

Dr. Kays has ordered a PICC line that would be used in place of the ECMO, if she can remain off the machine. He will leave the canula attached to Ella right now and all ECMO equipment near her bedside, so that they can monitor her while she is off ECMO and reinstate the ECMO machine if she needs it.

This would be a big step for Ella. Please pray today that her little body would have the strength to remain off the ECMO machine!!!

Thanks everyone for your amazing support and prayers during our journey. You’ve all been amazing.

UPDATE (10:45 am EST): As of right now Ella continues to have her PICC line threaded through her veins. So far she’s tolerating it. This process can take a couple hours and is a key piece in being able to give her the medication she needs. BUT, it’s not always successful on the first try and they would have to wait a whole other day to try again. Please pray specifically for success on the first try!

UPDATE (11:30 am EST): Just received a call from her nurse and the PICC line is in! Praise you LORD! We’re now waiting for Dr. Kays to come out of another surgery. He will then look to take her off ECMO to see how she responds. Stay tuned…

UPDATE (1:05 pm EST): They’re removing her from ECMO right now to see if she can maintain being off of it. Please pray…

UPDATE (3:00 pm EST): Ella’s off ECMO, and she’s doing OK, BUT she is far from out of the woods. We need to continue to pray for her lungs to get stronger and for her blood gases to improve. Lord Jesus strengthen our little girl. Amen

UPDATE (7:15 pm EST): Ella’s stats were fluctuating down a bit earlier, but at the moment she’s doing ok. Her body is still trying to adjust from coming off ECMO; it has to do all the work now. The next 12 hours are critical and will determine the next steps for Dr. Kays. We continue to pray for our baby girl to stabilize and grow strong. We’ll be posting another update later tonight. God bless.

Ms. Ella remained stable throughout the day, Praise God! If she can maintain through the night, Dr. Kays may try taking her off ECMO in the morning. Right now this is our hope and our prayer; that our baby girl will keep strong through the night and the following days.
 
If she can be stabilized off ECMO, she will most likely have surgery this week, either Thursday or Friday.
 
Please pray fervently for our baby girl. These two things, removal from ECMO and the repairing surgery, are the biggest hurdles. There are more to come, but these two are critical!

Ella’s stats maintained through the night even with the ECMO flow reduced. She did have a couple dips in her blood gases during the times she was being handled, but this is not out of the ordinary. Her bilirubin levels have dropped off as well, which was the hope after the ECMO circuit switch.

We’re anticipating a call from Dr. Kays this afternoon with an update.

We continue to pray that our baby girl grows stronger every moment, allowing her to come of ECMO in preparation for surgery.

Praise God for all He has done and continues to do.

It is with great joy that I bring good news to everyone this evening.
 
First of all, they switched out the ECMO machine late this afternoon without a hitch. No problems!
 
Second, we talked with Dr. Kays. He performed another chest x-ray and there was improvement in her lung development since Thursday of last week!!! Since he changed out the ECMO machine, he wants to give her a couple of days longer on ECMO, still holding out hope that her stats can improve a bit more. He would like to see her stats stabilize and increase forward over the next day or so, remove her from ECMO on Wednesday or Thursday and then do the surgery.
 
As you can tell, he really does not want to perform surgery on ECMO either! Maybe Ella keeps hearing him talk about it, and decides to fight a little bit harder, just to make his decision tougher!
 
Actually, I think this is a direct testimony to all of you that are praying for Ella each and every day. Dr. Kays did not expect to see this much improvement in Ella over the past few days. This can only be directly tied to God’s hand moving in a miraculous way. And believing that prayer is powerful, we want to thank each of you for your support and prayers.
 
Dr. Kays decided to turn down the flow in the ECMO machine today (since he replaced the circuit) to 100 (we started at 220 and decreased in increments of 20, down to 120 as the lowest point before turning it back up to 160 last week). He will be monitoring her stats to see if she can stabilize and improve with the lower flows. Please continue to be fervent in prayer – – we still are holding out hope that Ella might be able to have surgery off of ECMO.
 
Finally, her pink head band that I wrote about last night. There is a story behind this one. Since I did not see Ella due to my ER visit, I just assumed that it was provided by the NICU. There are more girl babies in the NICU right now (Ella was the first baby girl with CDH since 2 years ago; all the other patients have been baby boys). Anyway, I just figured it was a standard item that all the baby girls would get to enjoy.
 
When we visited tonight, why was my baby girl the only one that looked so fashionable? We found out that the ECMO technician, Roger, that Josh and I have spent many late nights with by Ella’s bedside, went and got it for her. Isn’t that too cute? Then, when we arrived today, a nurse by the name of Joy added the bows to her headband. Way too cute!
 
Ella was awake and looking at us this evening, giving us those eyes of hope and gripping us to tell us that she is still fighting.

Ella had a stable night. We’re waiting to hear from Dr. Kays about the timing of surgery. We expect to hear from him sometime today.

While Tina was in the ER yesterday I went up to see how our little girl was doing. She woke up for me again and grabbed my finger. Man she had a tight grip and was yanking my finger all around. With all that strength and new headband she reminded me a bit of this guy. =)

We continue to pray for an incredibly successful outcome and that the Lord would guide Dr. Kays hands during surgery. This little girl is so much a part of us and it is amazing to see how much she’s becoming a part of everyone else.

Thank you all for your continued thoughts and prayers.

God Bless

UPDATE: We talked to the nurse practitioner this morning. Dr. Kays will not be in until later this afternoon, but he did call in with instructions to switch out the ECMO machine. The switch of the ECMO machine will provide a new circuit with fresh blood and newly maintained equipment to minimize potential blood clots. There are some risks involved with this, so please pray that this transition will go smoothly. Ella will be off the circuit for about 30 seconds which is her lifeline at this time.

We might be able to conjecture that surgery will be tomorrow, but until we talk to Dr. Kays we won’t know for sure.

Please stay tuned…

Ella’s condition is the same – stable but no improvement. You might notice that she has a new head band – pink with hearts. So cute for all the girl babies in the NICU! She did take a few moments to look around and respond to Daddy’s voice.

The update on my condition – – thank goodness that I did not have to be admitted into the hospital. Although we were there from midnight until nearly 9am (we just got home), it is good that we decided to visit the ER.

I was diagnosed with Mastitis, which is a bacterial infection of the breast. I will need to take antibiotics for 10 days and get lots of rest.

Keeping this post short because I am falling asleep while writing it!

Tina thought the beds at the hospital were so comfortable that she wanted to sleep there again. Not quite.

Tina’s been pumping milk for our baby every three hours since she was born. Yesterday afternoon, she wasn’t feeling too well. Last night at 11pm she still wasn’t feeling well and she was burning hot so we headed to the ER. Three hours in the waiting room and two hours waiting for a doctor…it looks like Tina may have a breast infection.

It’s 5am and we’re still waiting for the test results. We’ll keep you posted.

Ella’s stats are the same – – but not improving. Her bilirubin levels are continuing to increase, so they are running more tests on her liver. They increased the Lasix to try and reduce more of the swelling. Thankfully, they have not seen any more seizure activity since they medicated her at the initial sign of seizures. So, they were going to try and reduce the seizure medication — we hope the seizures will stay away!
 
This upcoming week with her surgery is a big milestone. Please pray for Ella’s strength and a successful surgery.
 
Also, her parents are exhausted! Please pray that we will be renewed by His strength. It is so tough to see this sweet little girl connected to all these machines, day after day, with no forward progress.
 
We know His timing is perfect and that He is in control. Holding onto these truths, and being encouraged and reminded about them by all of you, has been a saving grace. But it has not stopped the emotions from rising to the surface each day!
 
Lord, help us to trust you even more as we watch the fulfillment of your will unfold for sweet little Ella.