Thursday, December 30, 2010

Eventful, but not

We have, for the most part, been hanging out with Ella and waiting.  We are waiting for her to gain some weight and waiting for next week when the doctors and surgeons will take a look at her belly again.  In all this waiting, we have really been enjoying Ella.  To just look at her.....hold her......bathe her......nurse her......to just "be" with her.

She had her first bath a couple days ago.  She did not make a sound, but instead soaked in the experience.  Her eyes got instantly huge (like they always do) and she started moving her limbs around slowly and fluidly.  It was such a special time with her.  The nurse said, "I had a feeling she would enjoy this."





That little Ella is so curious with those eyes of hers.  She doesn't fuss much probably because of all she has had to endure.  We have seen this as a great blessing that she has a great temperament since her heart would not have been able to handle much.  She is so pleasant and just likes to observe, interact, and visit.

She also was able to try "nursing" for the first time last night.  The doctor said to try nursing her right after I pumped so that she wouldn't get too much milk.  Plus, if she does get a little milk then we can see what her stomach will do.  Kind of a mini test.  Ella has always rooted and tried to nurse when I hold her so this was kind of a treat for her.  She did ok....I could tell she was getting frustrated because this was the most I've heard her cry and grunt.  Luckily, our nurse for the night was a former lactation specialist and she helped Ella latch on.  It was wonderful.....I can't express in words how close it made me feel to Ella.

A couple more events while we have been waiting include Ella being moved to a crib and she had a big visit on Christmas day in the viewing room.  Family was able to see her all together including far away family over Skype from Olympia, Norway, and Hawaii.  It was great to be with family and Ella at the same time.

So really, we have been doing a lot while we are waiting.  Kind of seems to be the case....when Jesus has us "wait"  He is doing a lot in us to help us grow.  Amazing.

Friday, December 24, 2010

Silent Night

We hope this Holy Night is joyful & peaceful for all of you & your families.  Enjoy a couple of pictures of our peaceful little angel and a little video of a typical interaction with her when she is awake & alert.

We love you all... Merry Christmas! -The Dordals




video

Tuesday, December 21, 2010

Super, super quick, glorious update

Ella's echo went so well.  Her ejection fraction is close to 55%.  She was born at 5% and there wasn't much saying that it would get better.  A normal ejection fraction is 60%.  Wow.  We are just simply amazed right now......more to come when we are settled down from this positive news.  Thank YOU all for your prayers and support.

Monday, December 20, 2010

Quick update

Just a quick update.  Ella has had a good week.  She is getting more calories through the tube from her nose to her intestine.  This will be done for a couple weeks or so until she gains more weight and proves that she can take full feedings.  Then her stomach will be tested and looked at again.







She has an echo today.  The first one in a bit over a week.  We are hoping and praying that there is good news to be found.  She has been stable and has had good lab work so we are hoping those are all results of a heart getting healthier.  We will see what our God has in store for our little girl.  A day at a time.

Thank you Jesus so much for all that you have done and all that you WILL do.  Our hope is in You.



Tuesday, December 14, 2010

Oh Ella

Ella, Ella, Ella.....I just want to bring her home with me every time I go to see her.  We have been holding her twice a day now for the past few days and I just can't believe how sweet she is.  It makes me think how lucky I was with our two boys....we had the 'privilege' of being woken up in the middle of the night by their cries, changing poopy diapers, being peed on, having sore arms and shoulders from holding them and comforting them, staring into their eyes and talking to them whenever we wanted to, and nursing them to health all hours of the day.  All these things were, at times, considered time consuming and taken for granted.

Lately, Erik and I have really noticed these 'privileges' that we seemed to overlook with the boys.  In how we wanted to hear Ella cry when she had a ventilator blocking her airway, how we cheer when she has a dirty diaper, how I would rather be nursing a sweet cuddly baby rather than a pumping machine, how we hang on to the last time we looked into Ella's eyes to carry us through until we see her again, and how we could care less about our sore arms and neck because we just want to hold her a little bit more.

I want to look at all areas of my life and think "is this really a burden?  or is it a privilege?"  What seems like a burden could really be a blessing.  I need to change my way of thinking.

Dear Ella has been doing well.  She had that scary drop in blood pressure on Thursday, but has recovered. Meds have been adjusted and she seems stable for the time being.  Her heart is functioning the same, which is good.  The cardiologists are adding another heart function medication so maybe we will see improvement.  Her feedings have steadily been increasing for the past 2 days.  They are still feeding her through a tube into her intestine, but it is going through and she is pooping on her own.  Her stomach still needs to improve so that she can eventually be fed into her stomach and finally through her mouth.  It is still a watching game.....see what little Miss Ella does and the doctors and nurses adjust what they can do.  We are definitely not out of the woods, but we continue to put our trust in Jesus daily and hourly.  Ella is His daughter and He holds her safe when I can't.

We continue to visit Ella twice a day, which is made possible by a wonderful group of friends who watch our boys while we go visit.  It is not a burden to have to go visit Ella in the hospital, it is a privilege and a wonderful blessing.


Friday, December 10, 2010

Rocky End to her 1st Month

We went to bed last night about as anxious as we've been for a couple of weeks now.  We got a call from the nurse around 7pm (about an hour before we usually come in for our nightly visit) & things were looking pretty shaky.  Ella's blood pressure dropped to a low enough level that the doctors & nurses were quite concerned.  Then, when she didn't pee for an extended period of time, the attention turned to her kidneys.  They scheduled an ultrasound due to fears that a clot may have been blocking blood flow.  The cardiologist also came in to look at her & wanted an X-ray to see if there was any fluid accumulation around her heart (like she had when she was born).  They had to insert an arterial line through her wrist so they can constantly measure her blood pressure & draw blood for labs and also insert a cathater to measure her urine output (is there anything less appealing than a cathater?).

They couldn't figure out exactly what caused this little episode,  but speculation is that some combination of going on & off certain medications & changes in those doses - potentially along with her tummy issues - had a negative side effect.  Another thing we hadn't mentioned before was that her last echogram (from a couple days ago) showed a slight decrease in her heart function - around 5%.  And even though it was explained that this was an expected & acceptable result of weening Ella off of a certain IV medication, it only added to our fears & doubts.

When we visited her, she had a splint on one arm for the blood pressure/lab line & had get poked a couple times to establish another IV line so they could give her a blood transfusion (which ended up in a splint on her other arm).  It was the first night in at least 10 days that Christa didn't get to hold her.  It brought us back to the time when we could only helplessly watch her lay there & occasionally squirm around uncomfortably with tubes & wires hanging everywhere.

Double wrist splints are the new look for the holiday season
Just another one of those humbling nights after things had been going seemingly well...

Its weird how, when things appear positive, we can slowly draw away from that state of complete, conscious dependence on God.  Even with the news about Ella's belly, I honestly wasn't super concerned because she looked so good & I was confident that God was simply going to take care of it.  But last night kind of caught us by surprise.  I was reminded once again how fragile this little princess is, despite how hard she's fighting & what she's overcome - and ultimately how fragile all of our lives are.

And this morning seemed like a reminder of God's faithfulness.  I called the hospital about 30 seconds after I woke up to relatively good news.  Her blood pressure had stabilized at a more normal & acceptable range.  The kidney ultrasound showed no signs of a clot & the X-ray indicated nothing new & potentially detrimental to the heart.  Kind of like He's saying, "Don't worry, I got this."

As we reflect on Ella's 1-month birthday today - which also happens to be my 31st - we keep seeing this pattern: the more control we think we (or the nurses, or the doctors) have of the situation, the less we really have.  When we are confident in ourselves, we get humbled.  When we humble ourselves, God comes in & gives us confidence.  And its amazing how much more comforting it is to be in God's confidence than our own.  Lord, please help us to remember that every day.

Is this her cutest picture yet?  She continues to melt our hearts...

 

Monday, December 6, 2010

Belly Update

This is just a quick update & request for prayer.  A test was done to see if the cause of Ella's tummy problems could be found & the doctor reported that there is a 2cm long "narrowing" in her small intestine.  He couldn't say with complete certainty exactly what it is, but he's fairly sure it is an area of scarring that was a result of poor blood flow when her heart was at its most inefficient.  If this is the case, it will not be able to heal on its own, because it is scar tissue.  Therefore, the only option would be surgery, which might not be a possibility with Ella's heart condition & the medications she's on.  The doctors, radiologists & cardiologist will be putting their heads together today to discuss various options & opinions.

So, we are asking you all to go to the Father to ask for more unexplainable healing that only He can do.  We've already seen Him greatly improve a heart that shouldn't have improved at all.  We are in awe that He has healed her to a point where she is completely breathing on her own, without any respiratory devices (!).  So we know he can heal an intestine that "can't heal on its own" as well.

Hey, where's my respirator? 

But should His will be something else, we are praying for the right process & decisions to be made regarding her care.  For wise 2nd opinions & plan B's to keep her stable & growing in the event that surgery is too risky for the time being.

Thank you all again.  We hope this will prove to be just another hurdle that currently appears to be detrimental, but is really a simple snap of the fingers for the God of miracles.

Amazing Time in Mama's arms

Our little Binky Baby

Friday, December 3, 2010

Ella Belle's Belly

Ella's loving brothers.

Ella's brother has 'officially' given his sister a nickname.....Ella Belle.  After she was born and we were sitting in the hospital room, Elijah asked "what should her nickname be?"  Before we could answer, he blurted out.....ELLA BELLE!  I just love hearing the boys say her name and talk about their baby sister.  They love her so.....and it warms my heart.





Ella Belle's bellY needs to start working.  I would like to ask for prayer specifically for her belly and digestive system.  She has been spitting up, which would just be an inconvenience with normal babies.  I remember telling people with the boys "he's a spitter so watch out!".  She needs to keep things down to grow and absorb oral medications.  I feel like I am sounding like such a mom....eat your food!  do you want more?  you need to grow strong!  there's more, have more!  I remember my grandmas, mom, and mother-in-law always encouraging food for growth and strength.  Now here I am encouraging the same.  Ella has been given a little breast milk through a line in her nose then she needed to have an oral medication through the same line so they stopped the feedings.  The volume of milk with medication would have been too much for her to handle.  Then they were giving her pedialite to see if it would help things move.  She has been spitting up a lot so they stopped the pedialite, but she was still spitting up today (stomach bile, spit, and random fluids).  My mother's heart would really love to see her stomach absorbing medications and feedings.  Please pray with me.

Ella eating via mama.  I love feeding my babies. Even when they are in my belly. :)
I am always intimidated to write about Ella's medical status.  My husband, Erik, is such a blessing when it comes to that area.  He talks to the doctors and nurses and then remembers what they say.  Me, on the other hand, I feel so emotional and....overwhelmed by all that needs to be done and overcome, but at the same time my mind can't stop thinking about all the medications and her small little organs that need to be strengthened.  Ella is always on my mind and heart so I will randomly ask Erik questions about her medications, what the dr's report was for the day, and why this is happening to dear Ella.  He has been such a constant for me in this storm.  He reminds me of the simple things that get washed away in the midst of this storm.  Things like how we need to keep our trust in Jesus and Him alone, how Jesus has already paid the price for our sin, how we need to believe and go to Jesus in prayer and ask for our heart's desire.


I am asking, dear Jesus, that you will heal Ella's little body and please heal her little belly.  I am asking that we will always treasure every breath that we and loved ones take.  Life is a gift and we need to love.....just love.  God, help us to love.  Ella is teaching us how to love and we thank you for that Jesus.  Amen.

Tuesday, November 30, 2010

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.

Sunday, November 28, 2010

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.

Thursday, November 25, 2010

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.

Tuesday, November 23, 2010

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.

Monday, November 22, 2010

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

Sunday, November 21, 2010

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.



Friday, November 19, 2010

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!

Today (Actually Yesterday)

Wow, that was a rough day.  But then again, if your day includes getting asked by a group of doctors how far you want them to go to bring your precious little baby back to life if things get really bad, it probably won't be a great one.  Especially when those doctors don't really see anything to suggest that it will be possible for your new little treasure to survive for the long haul.  Ella's heart is about as sick as it can get, we've been told.  And we can't do anything unless it gets significantly better on its own, which they believe is pretty much not possible given her prematurity & other complications.   

That's the 3rd time we've felt like all our hopes were being crushed.  To sit there & hear about the likelihood that at some point there may be nothing any doctor or nurse can do to keep my baby alive is the hardest thing I've ever had to endure as a father.  Its a harsh reality that we aren't faced with yet, but we might be if Ella's condition quickly goes downhill (which they fear it could).  

After weeping a bit in hopelessness, an amazing thing happened.  I felt so utterly helpless, desperate & insignificant as I laid on the ground.  But somehow I had a moment of clarity - realizing how awesome, amazing & loving our Creator is.  I had a deep drink of "the peace that transcends all understanding".  I know that was something a number of people have prayed specifically for us, but its not like I was asking God for it in that moment.  It was just there.  And it really was beyond all understanding, that's all I can say.  I thanked Him for Ella.  For how beautiful & perfectly imperfect she is.  For the wonderful little beauty mark on her forehead & my newest ritual of kissing it every time we leave her.  I remembered that God is Love and everything He does is out of love.  If He saves Ella''s body, it will be out of love.  If he decides to bring her to His house - to a room prepared for her since the beginning of time - it will be out of love.  That conversation with the doctors & the anguish of going through it is also out of love.  And it leaves me in awe because I don't understand it.  But I do feel it.

So what originally saddened, angered & offended me, turned out to be a real touch of grace.  As we sat after the meeting, it was apparent that we do need to be prepared that God's will might be to take Ella from this world.  Because ultimately, there's really nothing we can do in our own power to make her well.  Now if you think that sounds like throwing in the towel, think again.  I will pray & plead with God to repair her heart more than ever.  Christa & I would give anything to actually hold her in our arms, hear her cry, lay her down to sleep - so we will continue to pray for that day.  And I think I'm more hopeful now because the anxiety & worry is gone, at least for now.  Even with peace, I know that this is a hard road - no matter the outcome.  My heart is heavily burdened & emotions can't be contained (cried while typing this).  But we know that the unbelievable support of our family, friends & complete strangers, which has held us up during this time, will continue to do so.  Not because it's an obligation, or because it makes other Christians feel good to hear me say that.  But because Christ's love compels us to love. 

Maybe it wasn't such a bad day

-Erik    

P.S. Here are a few of the great photos taken by Ellie Irvin the other day (capturedbyellie.com).  Thank you again, Ellie.






Thursday, November 18, 2010

Forgive Me

Lord, forgive me for my worry and doubt. You are all powerful. Hold sweet Ella for me.

Ups & Downs



This is just so hard.  When things improve, it is so uplifting.  But when Ella has a struggle, it is crushing.  That's been the story of yesterday to today.  We seemed to have a lot of wonderful news yesterday afternoon when speaking with one of the doctors.  Ella had some significant improvement in her kidney function which would suggest better blood profusion.  Even her echogram showed more minor improvement in heart function and the doctor spoke about how she seems to be steadily (but slowly) progressing, which is obviously much better than slowly deteriorating.

But then last night during our visit, Ella had a couple of episodes where here oxygen levels dropped & she appeared to be in pain.  Those began getting more frequent overnight & an X-ray this morning showed that her heart appears to have gotten a bit larger, which has in turn constricted some of her lung space.  It is just so hard to hear this type of news after being so optimistic a few hours earlier.  Our hope & prayer is that this is just one of those downward swings on an otherwise upward trend.  Please join us by remaining steadfast in prayer & hope that God, out of His great love & compassion, will continue to work miracles in our little Ella.


Thanks for celebrating Ella's one week birthday with us yesterday! (and special thanks to our friend Mackenzie for making this wonderful cake)

Wednesday, November 17, 2010

One week ago, today.


Our dear baby daughter, Ella has been with us for one week today.  It is amazing, though, because it feels like she has been in our lives forever.  I was having a really hard time getting out of bed today.....I just didn't want to face it.  My wonderful husband comforted me and reminded me that we always feel better after we go and see Ella.  Erik is a wonderful support and I could not have asked for anyone better than him to be my husband for the rest of my life.  I am one lucky girl.

I got up and showered and headed to the hospital while my mom took care of our boys.  She has been a rock for our boys, especially Elijah since he is a creature of routine.  Erik and I headed to the hospital to be greeted by our gorgeous baby girl.  There is something about being with her that is such a great comfort.  To be able to sit in her quiet room with her, Erik, and our Creator has been such a blessing and a breath of fresh air lately.  I just love talking with Erik over her bed, praying, and being still.  Jesus is at work and I can feel it.

Tuesday, November 16, 2010

Waiting Game

Before we get to the medical stuff, we wanted to share a great blessing today.  A friend of ours, Heidi Miller, told us one of her friends, Ellie Irwin, who is a professional photographer, wanted to come take pictures of us & Ella at the hospital.  The best part was that we were able to bring Elijah & Ayden back to see Ella for the 1st time.  They were in awe of her & really enjoyed looking at their little sister.  We look forward to sharing our family portrait with you all as soon as we get it.  And we're so thankful for Ellie to offer us that chance to all be in a photo together!

On to the medical side...  The big day with the cardiologists kind of left us exactly where we are - waiting.  Ella's overall condition & function of a few key systems (most notably the kidneys & liver) need to improve in order for any type of surgery to be considered.  There was one option the cardiologists discussed at length today, but it is an incredibly risky procedure even in healthy, full-term babies.  Since Ella's is premature with multiple secondary issues, the risks just sky-rocket and really make it too risky to consider.  Her case is also very rare: The cardiologist we spoke with (who is the absolute best in the region) said they see about 1 full-term baby a year with a similar condition & have actually never seen a premature baby like Ella with the heart condition she has.  Basically if they don't make it to full term, they never make it out of the womb alive.  That is one reason it is so amazing that she is even alive in this world, because it was only chance (rather God's intervention) that we went in to get the ultrasound that detected Ella's heart problem.

Since surgery isn't a possibility at this point, they are attempting to get her in position to see if her heart can progress naturally.  Without getting too medical/confusing, there is one type of medication that is being ended to allow for the natural closure of some type of duct within the heart structure (a duct that is supposed to close up after birth).  It was originally given to her because allowing the duct to stay open was encouraging blood flow, but it also began to let blood come back into the lungs - essentially "stealing" it from the rest of the body.  The hope is that allowing this duct to close will help to get more blood to the rest of the body and even encourage her heart to pump better.  If she can get her organs stable & have time to grow to a "full-term baby" size, surgery or a heart transplant might come back into the picture.  But there are no guarantees her heart will improve either - and until she does, there is no plan B.

So for now, we are just going to have to see if Ella's condition can improve.  Essentially, she just needs to continue to be the fighter she has been for 6 days now.  It is an extremely uphill battle for her, but we know that God can accomplish the impossible.  Your prayer & support is so amazing & we know it is helping little Ella continue to fight.

Monday, November 15, 2010

Just watch this video...

No need for us to comment on/explain this video, it really just speaks for itself. This was just an amazing & unexpected state of awareness that Ella had tonight. We are so thankful that we got to be there! She still has a long long way to go & tomorrow will be an important day as the cardiologists will be reviewing her case & discussing options. Please pray for wisdom, insight & compassion for them and that the Master Cardiologist, Jesus, would be guiding them.

But tonight we will be dreaming of Ella's eyes.

Echogram

Forgot to share the latest echogram news...  The cardiologist said that there was actually some "very slight" improvement in the function (pumping) of the left ventricle, but relatively speaking its still quite similar to yesterday's readings.  Even though its very small - and maybe not enough for a cardiologist to get excited about - we will take it!  Any improvement is better than no improvement and we think it is saying a lot about that tough little girl.

First night home.

As anticipated, it was very hard to leave little Ella at the hospital.  As we drove away, I felt a piece of me being tugged further and further away.  I know she will be taken care of, I just long to hold her and be the one to take care of her.  One day I will.
While I was in the hospital the nurses, doctors, and visitors knew my family's story and treated me accordingly.  I feel so vulnerable being out in the "real world" now.  Walking around in public I realize now more than ever that there is a story behind every person.  As we come in contact with others known and unknown we should really treat them as precious children of God.  We do not know what is happening on their life journey.  Jesus calls us to be lights in this dark world....so shine!

Life will throw hard things at us, but we must continue to shine for others and for our God who is the source of our light.

-Christa
 

Sunday, November 14, 2010

Saying Goodbye to room 2010

We are getting ready for our last visit with Ella as "overnight guests" at the hospital.  Mixed emotions for sure, even heavy hearts.  We have 2 incredible boys who need us as well & are excited to have some regular time at home.  But it's also going to be difficult knowing that we can't just pop upstairs to see Ella anytime we want.

She is doing quite well though.  The doctor said for the first time since birth she's been getting rid of more fluids than she takes in, which is good because it indicates a better performing system overall and its reducing some of the fluids she's been retaining in her tissue.  Also, the nurse during our last visit said they have all been pretty much shocked by how well she's doing, considering the condition of her heart.  When we saw her last, she was breathing on her own over the respirator for the entire time.  We know that she has pretty much had that capability since the 2nd day, but has just been letting the respirator do the work (probably due to the work her body has been doing in other areas).  But it was so encouraging to see those cute, quick little breaths moving her chest up & down.  Her heart rate as also been steadily lower, indicating that it doesn't have to pump quite as hard to do the work it needs to do.  We love these little hopeful victories...


All the cardiologists will be meeting tuesday morning at 7am to discuss her case & brainstorm the possible surgical options.  Please pray for any type of noticeable to major improvement in her heart function because the most ideal & successful scenario is that her body improves & becomes viable without surgery.  We've been told that the surgical option we are likely to have will be very risky & potentially not great odds of success.  But we also know that God has helped so many people throughout time overcome desperate odds and are prepared for Him to help us as well.

Thank you again for your visits, thoughts, prayers, emails & blog comments while we've been staying at the hospital.  You don't know how much they've helped.

-Erik & Christa

Homebound

We have been overwhelmed by God's love through all of His people.  Thank you so much for all of your comments, prayers, and emails.  They have been such an encouragement.  They give us hope.  They give us a light when it is dark.  Please continue to pray and post comments.
  

We will be going home today.  Please specifically pray for our emotions during this transition.  Leaving the hospital without our precious bundle of joy is going to be very hard, but we will stand strong because our Jesus will be holding us up.  We will trust in Him.

Thank you again for everything.

Ella Louise Dordal

Saturday, November 13, 2010

Saturday Update

3:45pm - Just had another little time with Ella.  We mostly sat & looked at her, talked to her & spoke with each other a lot so she could hear our voices & hopefully feel "at home".  This morning we got to do a few fun things like take her temperature & clean off some crusties from around her mouth.  Nice to feel a bit more like normal parental units...


On to medical stuff.  Latest Echo-Gram again showed an increase in blood flow through the Aorta (or something to that effect), which is a nice sign.  But there is still no improvement in the actual muscular function of the left ventricle.  Again, this is the main issue that the cardiologist said would need a miracle to heal on its own & become viable.  But it is also causing secondary problems in other organs (originally lungs, lately kidneys).  However, Ella - being the fighter that she is - seems to continually overcome these.  Her lungs are functioning great & she has been outputting fluids (a.k.a. peeing) better than she ever has.  Her kidneys are the next thing that they have been treating & monitoring so hopefully we'll see some results soon.


If her heart doesn't begin to gain strength it will be necessary for the rest of her organs & systems to be stable & properly functioning in order for us to even consider any surgical options (which apparently aren't even very good options, but might end up being all we have).

So continue to pray for a miracle that her heart would be healed.  But also for little improvements each day, as those give us amazing hope & encouragement.  And thanks again for all your love.

-Erik & Christa
11:45 pm - After receiving the news about the apparent grim medical realities of Ella's heart, we had a tough hour of doubt, crying & pleading for a miracle.  But then we were blessed with an absolutely wonderful time with Ella.  We spent over 2 hours by her side, able to hold her hand & she even opened her eyes a few times to see us.  What a gift that was. 

Friday, November 12, 2010

Please pray now for a miracle

Our relatively good day just felt like it got completely shattered by a visit from a cardiologist.  As we posted earlier, Ella has been stable & seemed to have steady- albeit small- improvement in the form of tiny little victories.  Our spirits were the best they've been since this all began, as you could probably note from my previous post.

But we have been brought to our knees again after the cardiologist painted a much more bleak picture.  He said that it will take nothing short of a miracle for Ella to be able to live.  Based on his experience, the odds are extremely low that her heart will recover since it has yet to make any progress with the function of the left ventricle.  If the next couple of days stay the same, a recovery will be even more miraculous.  He also said that her heart could basically give out at any moment.

I don't even know how I have the ability to type this right now except that we believe in a God - a Love - who moves people pray, to care, to give and love to others.  Your prayers, your outpouring of support & your generosity have been one of the greatest reflections of that Love we have ever experienced.

Thank you for your prayers.  Continue to love.  We are asking for a miracle.  We hope & believe it can happen.  Help us to keep the hope, to keep the faith, to trust the Lord.  Thank you so much.

Erik & Christa

Latest Update

I don't recall ever asking others to pray for pee, but I am now!  It isn't an urgent concern, but the doctor said Ella needs to produce more urine, which will (for whatever reason) get other systems to more normal levels.  That has been one of their main goals for the day.  The other thing they need to balance is the potential for blood clotting in her left ventricle.  If it clots, it could be catastrophic.  But if the medication they are very carefully & lightly administering causes the blood to get too thin, it could cause other problems such as long term brain damage.  So obviously everything is quite delicate and all the doctors & nurses have been really wonderful.

Meanwhile, the cardiologist noted that the heart did decrease in size between echo-grams, but there was no improvement in function.  The left ventricle is still not really pumping at all, only "quivering" a bit.  Her right ventricle is doing all of the work right now.  They gave her a little blood overnight because her red-cell count was low, and this morning her skin looked less pale this morning than last night to me.  On the positive side, the doctor said she should be weening off of whatever blood pressure medication she has been on because that has been doing well.

Overall, the doctor said she has taken a small step backwards from yesterday, but likely due more to these secondary conditions.   The key is getting her heart to strengthen & function.

The next time I pray for proper urine flow, I hope its when I'm about 90 years old in an effort to avoid wearing Depends... or wait, actually there should be no next time.

-Erik