Her heart

Yesterday we received a very encouraging report from one of the cardiologists.  To be honest, we still can't believe it today.  Our hopes are high, but at the same time, we continue to leave Ella in God's hands....she is His.

I was holding Ella while Erik was sitting next to me when the cardiologist called the nurse's phone to speak with us.  Erik put the phone close to both of our ears so we could hear what he had to say.  The cardiologist said that her left ventricle has shown major improvement and that he was very happy, surprised, and pleased with her echogram yesterday.  Let us explain why he was so pleased... One of the key things they have been measuring is what they call the "ejection fraction".  This is the percentage of blood contained within the ventricle that gets pumped out toward the body with every contraction.  Ella's ejection fraction was somewhere between 5%-10% when she was born (it's more of an estimate than an exact number).  To put that into perspective, a healthy number for any baby or adult is around 60%.  That's why they told us that Ella's heart was about as sick as it can get without completely failing.  Her last echogram a few days earlier showed an ejection fraction of 15% to maybe 20%, which was cause for great joy because she actually showed some improvement in the function of her heart.  But this time the cardiologist said it is now up to around 50%...  What!?!?!

We were both in tears as the cardiologist continued to talk.  Our baby girl's heart was showing this much improvement?  He said 50% as in five-oh, right?  Like it tripled its production?  And this was right after another scary night in which she had a fever of over 101, blood pressure dropped too low & kidney/urine numbers looked concerning...  I can't believe this is happening when, from the medical side of things, the longer it takes for a heart to show improvement, the less likely it is that the heart will improve.  Our God is loving and moving.  He is so alive and Ella is LIVING proof of it.

Our friends, family, and nurses continue to support us.  We are so blown away daily by the encouragement and willingness to help.  We truly feel God's hand and love in all of this through all of you.  Thank you.

Fresh Breath

We have really been amazed at this little girl of ours.

It seems that every time we visit her there is a change of device or medication that reflects her progress & is meant to allow her body to continue moving forward.  The C-Pap only lasted a day.  She was so fussy with it on, yet showed such good progress & stability, that they quickly moved her on to a cannula.  She is much more comfortable with this & has continued to have good numbers.

"I just love my new breathing apparatus!" 

The fact that we have now both been able to hold her already is simply unbelievable.  Because of how delicate she was, we figured it would be weeks or months before we would be able to do that.  She used to get almost unstable in her heart rate, blood pressure & oxygen levels when a nurse simply turned her head.  Now she is acting more & more like a normal little baby who could be at home with us.  We were even planning a covert Thanksgiving day escape for her before coming to our senses. :)

Papa Time

There are, of course, still plenty of concerns.  Although the blood clot in her left ventricle hasn't enlarged at all, it is still there - which means there's always some risk of it causing a major problem, such as a stroke, if a piece breaks off & blocks blood flow.  She has also continued to lose weight a bit beyond where the doctors would like to see her (over a full pound since birth).  It was good for her to lose the excess fluid she was retaining, but at some point she will need to start putting weight back on.  However, they can't just increase her feedings abruptly because her digestive system can only handle a slow, gradual workload and it has been one area where she hasn't progressed as quickly.  So there is basically a continual adjustment in all areas as the nurses & doctors look to maintain a balance while at the same time nudging her along toward sustainability.

Overall, we feel extremely blessed with her progress.  She continues to defy the odds by showing tangible improvement with a heart that really should have no business (from a medical standpoint) supporting the rest of her body - to the credit of the One who gives & sustains life.

Thanksgiving

A card from one of the great nurses at Deaconess with Ella's Turkey-Handprints :)

My mother's heart has so much to be thankful for on this wonderful Thanksgiving day.  I am so thankful for my 3 beautiful children that Jesus has blessed me with.  I love seeing how He is molding and shaping their hearts in 3 very different ways.  Isn't it so great to think that He can meet us each where we are at and shape our hearts exactly how He wants it and how we NEED it to be molded?  Our God loves us so much that He sees us each individually and loves us right where we are.  So thankful.

I am extra thankful because I was able to hold Ella for the very first time last night.  I had to catch my breath as the nurse handed the pink little Ella bundle to me and then I was speechless and all I could do was stare.  So thankful.

I usually let Erik do the medical updates since he talks to the doctor (I get way to emotional), but yesterday was a busy day and so I will attempt to explain.  Bare with me.  Ella's ventilator was changed to a cpap, which is exactly what her grandpa uses at night for snoring.  It is a step in the right direction to get her breathing on her own.  The doctor called a few minutes ago and said that she is surprised and very pleased with how Ella is doing on this new breathing machine.  She was given caffeine to help with her brain (taking after her grandpa again).  She also got some tummy time to get her off of her back a little plus I got to hold her.  A very busy day, but my sweet Ella is so resilient at such a young age and she is so strong.  I am in awe of what Jesus is doing in and through her.  So thankful.

Echogram Update

Now for the latest echogram news...  We were originally a bit down about it because the doctors essentially told us that there has been no improvement and that they would have to start some medication to thin out a blood clot that has been forming in her left ventricle.  But they also said they wanted us to speak directly with the cardiologist team since they are the specialists and all the doctors see is a written report (they don't actually look at the echogram).   We just had that conversation less than an hour ago & it was quite a bit more encouraging.

They told that there has actually been some improvement in the ability of her left ventricle to pump blood since she was born (estimated at about 10% better).  Her heart size has also shrunk a little bit and she appears to be getting the necessary blood flow to her brain, kidneys & other organs.  In summary, her heart is doing better than it was her 1st week of life - & that's a good thing (although it was unexpected from a medical standpoint).  Even though she needs to have considerably more cardiac improvement to become "viable", she has proven thus far to be a survivor.  Thank You, Lord.

We still have to take it day by day & week by week to see if her heart continues on this slow, gradual trend upwards.  There will continue to be little bumps in the road, such as todays news of a suspected infection, the blood clot & making sure the blood thinner doesn't cause some type of detrimental bleeding.  But despite these potential scares, we are joyful to hear the first really optimistic news we have heard from a cardiologist.  So we will take that blessing and give thanks for it.

Thanks

We just wanted to take a moment to give a huge "Thank You" to everyone who has helped, prayed, emailed, posted comments, called, texted & spread the word about Ella.  We haven't necessarily been able to respond to all the comments & emails, so we hope this can be a nice little blanket response. :)  We read them as they come in daily and are encouraged, warmed & often brought to tears reading them.  Our spirits are always lifted when we hear from you & we thank God for each & every one of you.  We are tremendously grateful!

The other morning we were reading a passage from 2nd Corinthians in the Bible (we pasted it below).  I'm sure that the situation the apostle Paul was in was much more dire than ours, but it is amazing how perfectly this passage translates to our family right now.  The way we have had a community of people surround us during this time has been so amazing and we feel a true extension of the unfathomable love of Christ.  I hope you are comforted & encouraged as you read this, just as we are...

^"3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, ⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. ⁵ For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. ⁶ If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. ⁷ And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

 ⁸ We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. ⁹ Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. ¹⁰ He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, ¹¹ as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

Thank you for sharing in our sufferings and our joys.  And for continuing to pray that we might rely not on ourselves, but on God & his power.  

P.S.  We will update you as we receive any news about Ella's echogram, which is scheduled for today.  Keep praying!

-Erik & Christa

No News is Good News

If you have been eagerly awaiting an update after our super intense/emotional day on Thursday, we apologize for a bit of a delay.  The past 2 days have actually been very good.  Ella has been surprisingly stable and hasn't had any of the episodes that prompted the doctors to begin thinking ahead for worst case scenarios.  In fact a lot of her numbers (blood pressure, hear rate, kidney function) have become more ideal.  Even an x-ray appeared to show a fairly significant decrease in the size of her heart.  But the key is still the performance of the heart, so we are cautious to read too much into everything - but at the same time hopeful - as we await the next echogram on monday morning.  Still, we can't help but enjoy that apparent improvement and more importantly, seeing her in the most peaceful rest she's had so far.

We continue to pray for a calming of our hearts as we think about the future.  We have been doing our best to take it day by day, but we also can't help but look ahead a bit & wonder how this will play out for us & our family (mostly in the practical, day-to-day sense).  It's kind of a grind to visit the hospital multiple times a day when you have two great boys that need your time & attention as well - especially when Ella is having scary ups & downs.  Then there's the hypothetical situation where this goes on for weeks, even months (which would be totally fine if it meant Ella got better).  But how can we establish a healthy routine if each day could be our last with Ella, yet we still have to deal with the practical realities of life (work, bills, responsibilities, etc)?  How can we function as everything around us moves forward when all we want to do is keep our life on hold?  We know this will be a struggle to work out, but we ask for your prayer that we would remember to fully trust God every day.  He already knows what we will need and has it taken care of if we just let him, so what good is it to over-worry, over-plan & over-think things?  Isn't that saying we don't believe He will come through?  Lord, help us to truly believe that you always come through.

ways to help

Hi everyone,

This is Amy, a friend of Erik and Christa. I asked if I could hop on here and let you all know of ways that you can help out the Dordals during this time. I know they would have never posted about this themselves...so here are a few options:

Donate through Giving Anonymously to help out with medical costs. Click on the button below and you will be taken directly to a secure site to donate. Every penny will go to Erik & Christa for Ella.

Take Them a Meal: click on the button below and you'll find instructions and a sign-up. Such a tangible way to love on the Dordals!

Groceries: a great way to take a bit of burden off of the family... click the button

And for those of you on Facebook, click the text link or the "Like" button to share Ella's story with your friends...
Ella's Heart


And most importantly, keep praying!