Psalm 42:11
Why are you downcast, O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.

Baby Jonathan went to be with our Lord yesterday. Our heavy hearts pour out for his family and we pray the Lord’s grace upon them. Please pray that Jasmine and Chris will seek the one true source of peace during this difficult time.

Lord Jesus, we thank you for the opportunity to be touched by this boy’s life. We take comfort knowing that he’s in your arms right now. Praise you Lord for your grace and mercy.

Father, we lift up Jasmine and Chris, and we ask that they would draw near to you. Lord, touch their hearts. Let them know that you’re right there beside them at all times. You are the Wonderful Counselor, the Mighty God, the Everlasting Father, the Prince of Peace. Bless them Lord. In your Holy Name…Amen.

Ella Renae is doing alright today. I think she might have been getting a little too flirty with baby Par, so the nurses decided to move her bed…to the opposite side of the NICU.

She had a pretty good temper tantrum earlier as well. They tried everything to calm her down, holding, rocking, the binky, a clean diaper, etc., but nothing seemed to work. Fortunately the nurse was able to get her stabilized by increasing her oxygen flow up to 1 liter. Eventually she stabilized and they weaned her oxygen back down to 500mL. After this, she pretty much behaved herself for the rest of the day. The fact that her numbers came back in line is a good thing.

Tina and I are still a little nervous about her progress, mostly due to our previous experience. We’re really hoping that she will remain stable enough to keep off of any kind of mechanical ventilation. So far, so good though. We expect to have some episodes where she gets really upset, but hopefully some holding, rocking, and increased oxygen will be all it takes.

That’s the thing with our girl. She doesn’t have a lot of reserve. What I mean is that, when she gets upset, it takes a very short time for her stats to drop and for her to desaturate. Now over time, we expect her to get stronger, but it’s going to take just that…time.

After seeking the Lord in prayer, and through your prayer support as well, God had given us strong confirmation to stay in Gainesville until the summer. This decision did not come easy. We REALLY want to go back home to Colorado, but we know without a doubt that God wants us here for now. Our desire is to be obedient to where He wants us to be.

We weren’t sure how the details would work out, but we knew that if He wanted us here, things would fall into place. Thankfully, Tina is able to perform her job remotely, as she’s been telecommuting for years. However, I would normally go into an office everyday in downtown Denver. My employer was kind enough to let me telecommute with the expectation that I’d only be gone 8 to 12 weeks. As you know, it’s already been 20+ weeks and they gave me an extension because Ella is still in the hospital.

A big part of our confirmation for this decision, was whether or not my employer would continue to let me telecommute for this extended season. Without hesitation, they gave their blessing. Thank God! We perceived that this would be our largest roadblock, but now that it’s been overcome, it frees us to focus on what’s best for Ella.

Our instincts are telling us to stay close to Dr. Kays while she is still fragile. The reality is, once our girl gets out of the hospital, it’s not like we’re going home with a totally fine baby. Ella’s going to need the best environment to grow strong so that she can increase her reserve and eventually be exposed to the elements of the world. She’s not going to be able to do that right away. She’ll need to ease into it.

Driving back to Colorado, during winter, combined with the increased altitude is not the best scenario.

Plus, we need to take more time to prayerfully consider and research her future care in Colorado. The preliminary findings through the Children’s Hospital in Denver were not very promising.

One blessing we didn’t expect when we started this journey is the outpouring of support and friendship we have found in the staff in the NICU. We’re excited to see what God has in store for us.

Please continue to pray for our strength as we look to extend our time in Gainesville. It has been emotionally draining to be away from family, friends, and our familiar surroundings, but our desire to be obedient outweighs these feelings.

Psalm 117:2
For great is his love toward us,
and the faithfulness of the LORD endures forever.
Praise the LORD.

Ella is doing better today. We can just feel it overall compared to yesterday. As much as she doesn’t like the CPAP headgear (we don’t either), it’s doing her good and providing the support she needs.

Our girl surprised us with another milestone today…she is sucking on a binky. This is something that we have tried many times in the past, but she has never taken to it. It usually has made her gag, but not today. Ella gets most of the credit in this success, but some if it has to go to Nurse Kelly who has such a magic touch =). We’re hoping that it’s a good sign of her taking to a bottle in the future.

We’re beginning to realize that Ella is not as fragile as she has been in the past. Many times early on, stimulation could send Ella into a bad downward spiral. Now that she is older and is overall in a better place, we are looking forward to being more “hands on” with her.

We both have spent a good amount of time holding her today. Something that we need to get better at is our confidence in handling our girl. We had been trained earlier to minimize our interaction with her, but now it is getting to a place where we need to interact more. It is hard to “undo” the training, but hope to gain more confidence with each passing day.

We will see how Ella progresses this week. Hopefully it won’t be too long until she has a chance to try breathing without CPAP.

Par, Ella’s roommate, is making good forward progress and has been able to avoid ECMO so far – – Praise God!

Your continued prayers for Ella and company are so appreciated.

Thanks to all of you for the love and support during this extended journey. We praise God for bringing us here and for blessing us through all these circumstances.

To our surprise, Dr. Kays called this morning to let us know that Ella had been bumped up on the surgery schedule. They are taking her down around 10am EST, doing some prep and starting the surgery. The surgery itself should take about an hour and a half, but we will not likely have an update until around 1pm EST.

Once we have the outcome of the surgery with all the details, we will update the post.

Thank you for your continued prayers for Ella.

UPDATE (1:00pm EST): The nurse practitioner just came out to let us know that Ella is stable and looks comfortable. We’re waiting to go back and see her as well as hear the details about the surgery from Dr. Kays. Stay tuned…

UPDATE (3:00pm EST): We spoke to Dr. Kays. He indicated that surgery went ok, but he had to limit the procedure due to Ella’s tolerance. In her left cavity, he placed two larger chest tubes and worked to break up some gelatinous protein build up that he found. Due to Ella’s stability though, he chose not to make any changes to her right side at this time.

For now, he’s going to let her stabilize and then will perform some additional procedures to help her progress forward. One of these may include an intentional chemical scarring of her chest cavity, forcing the lungs to adhere to the chest wall. It sounds worse then it is, but it’s not something you want to have to do either.

We know Dr. Kays carefully weighs all his options, and we trust that if this procedure needs to be done, it’s in Ella’s best interest.

One additional item: Ella’s feeding tube didn’t make it into the right place the other day. So Dr. Kays was able to resolve this during the surgical procedure by passing Ella’s feeding tube by her pyloric valve. This will minimize her stomach expansion while still providing food to our baby girl’s intestines. Ella’s food was stopped temporarily for the procedure today, but we hope they can start it up again real soon.

UPDATE (10:30pm EST): We called to check on Ella tonight. Nurse Janet, one of the Fabulous Four, is taking care of her. This always makes for a peaceful night’s rest!

Since the surgery, she has had a total of 142ccs of chest fluid output (35 right, 107 left). That is a lot of fluid output for less than a 12 hour span!

They took a blood gas this evening and you can tell that Ella has less pressure on her lungs. Her pH level is 7.3, cO2=64, pO2=132. Part of the high pO2 is reflected in the ventilator giving her 60% oxygen versus 50% before her procedure. But even so, we have not seen these types of numbers in a while.

We are still holding out that maybe Ella’s body can resolve this fluid issue before Dr. Kays has to chemically scar her chest wall. Her blood gases and chest x-rays are the most determining factors. For now, we are going to get some rest and pray that Ella has a restful night too.

Thanks again for all the continued prayers throughout the day. We know it makes a difference.

We sit here in disbelief that our baby girl is already 8 weeks old!!! Holy cramole…time both flies and crawls at the same time. =)
 
Ella had a good day. Her stats were stable and her latest blood gas at 8pm was looking good (cO2=59, pO2=90). Her chest tube fluid output was 37 for the day when we checked at 11:30pm.
 
We saw Dr. Kays this evening. He confirmed that we’re on a slow boat to China, but the boat is moving, and in the right direction.
 
He pulled up Ella’s most recent chest x-ray so we could take a look. It looked pretty good, better than a few days ago for sure. Both lungs were more defined which indicated less fluid in her chest.
 
His plan is to take a chest x-ray each morning. If the chest x-ray looks good, the plan will be to simply maintain stats and good blood gases throughout the day (we should not be too concerned with her chest fluid output being lower for the day).
 
If her blood gases are not as good, her chest x-ray is hazy and she is not getting chest fluid output, he will look to replace the chest tube(s) again. He confirmed that besides aggressive surgery, this is the best plan for Ella right now until her body resolves the issue on its own.
 
She’s tolerating her food well. Dr. Kays has been pleased with her progress in this area and has increased her continuous dose of Portagen to 2cc’s per hour.
 
We still have a ways to go, but Ella’s progress is hopeful. Dr. Kays is hesitant to ween her ventilator while she’s dealing with this fluid issue because it can turn around and cause her problems. This is why Ella’s fluid issues needs to be resolved, so she can take her next steps.
 
Thanks to all of you for your support. Please continue to pray for Ella and the fluid hurdle.
 
God Bless.

Yes, we have already posted twice today, but we couldn’t resist sharing this video with you. Please note that it does require a high speed Internet connection to view.
 
We ask that you pray for Ella’s upcoming x-ray, and possible procedure related to her superior vena cava, scheduled for tomorrow (Monday).
 
Have a good night all.
 
UPDATE (1:30am EST): Just called on our baby girl. She’s doing better then last night, not as good as earlier, but good enough for us to get some rest. Praying for peace and comfort for our baby girl.

Today was a big day for Ella. Thank God for the successful surgery. Dr. Kays and his staff are truly amazing – – thanks be to God for their talent and passion for this high-risk birth defect.

For those of you that are not familiar with this condition, Ella still has weeks in the NICU to fight for her life.

When we spoke to Dr. Kays this evening, he reiterated how sick little sweet Ella is…she is most definitely in the severe category for this defect and although today was a success, we are not even close to being out of the woods.

Right now, we need prayer for her stats over the next couple of days. Dr. Kays wants to see her stabilize and for her fluids to remain low (if her fluids get to be too high, it puts increased pressure in her abdominal cavity).

Also, her liver was very swollen from its prior location in the chest. If her abdomen gets too tight from too much fluid or too much swelling, it can lead to organ failure.

In Colorado, we have several 14ers (mountains that are 14,000+ feet in elevation). Sport enthusiasts like to make it a goal to climb all the 14ers.

We feel like we have climbed only a some of the 14ers – – birth, going on ECMO, adding a PICC line, getting off ECMO and a successful repair surgery. But if you look at the list of 14ers, we have a lot more mountains to climb.

Thanks again for your support and prayers. Please continue to pray for Ella – – that she may grow strong and recover well from her surgery over the next couple of days. God bless.

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 condition has not gotten worse, but she has not improved either. Currently her care has not changed course and will stay the same over the weekend.

We talked to Dr. Kays today and surgery is scheduled for either Monday or Tuesday of next week. At this point, unless Ella has a tremendous weekend and makes large improvements, she will be having surgery on ECMO.

As we mentioned before, the risks of surgery on ECMO are high. The primary risks would be the possibility of severe bleeding as well as an increased risk of bleeding in the brain which could cause brain damage.

Of course, we would love to see Ella’s stats miraculously improve over the weekend. But if that does not happen, we just want to pray that she can gain as much strength as possible and that the surgery will be successful.

Also, we want to let everyone know to pray for Dr. Kays. He actually had to leave town for today and the remainder of the weekend due to a family emergency. All we know is that his mom was undergoing surgery today in Oregon and that he went there to be with her and his family. Please lift up the Kays family in your thoughts and prayers as well.

Ella’s stats were stable this morning and within a decent range but she continues to be very sick. We have compiled a list of specific prayer requests for Ella:

• p02 level as high as possible (her recent one was 114)
• pre and post ductal blood saturation levels at 100%
• cO2 level should be around 40 (her recent one was low 30’s; this is indicative of her gas exchange levels)
• her fluid retention has been high the past few days throughout her chest, abdomen and back
• improved liver function and reduced jaundice
• the content of blood in her urine is higher than normal, pray that this would reduce
• balanced pH levels in her stomach

 
Please pray for her stats to improve and stabilize over the next few days before surgery. If she can improve enough, they can remove her from ECMO. As mentioned previously, the risk of severe side effects while having surgery on ECMO is incredibly high.

Taking in the reality of the situation made for a pretty rough evening last night, but God comforted us through a book by Max Lucado: A Gentle Thunder. After our post yesterday evening Tina and I read chapter 4 together and it totally spoke to us. I felt so touched that I thought I would share the chapter with you all as well. Check out the video on yesterdays post if you get a chance.

Thank you for lifting us up in prayer. We continue to praise our Lord for the work He is doing, and thank Him for blessing us so much with Ella Renae.