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 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

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 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.