Friday, March 28, 2014

Every day is a gift...

"I want you to understand that this is serious...this is very dangerous to her...this could take her..."  These are the words we heard from Amelia's cardiologist just a week ago.  They still play over and over in my mind.  Amelia had a follow-up with her cardiologist because they noticed an increase in her aorta at 2 weeks old ("aortic root dilation").  This time it had grown drastically at an increase that he did not expect to see; so he had to prepare us for the worst.  He said they could do surgery and you could replace this part of the aorta, but then the rest of the aorta is affected, and therefore it wasn't an option.  The plan then was to put her on medication and hope for the best, but we have to know that it may not work that well.  Then it was question and answer time...  I just wanted to get out of there as soon as possible.  But to where?  Where can you run from news like that?  We asked some questions we never thought we'd be asking...  How long does she have?  Is all this treatment on her hands, legs, feet worth it?  Is this condition painful for her?  How will we know if something is wrong?  We don't know how long she has; high rate of mortality in the first 5 years...yes, the treatment is worth it....no, it's not painful for her..."for a baby with an aortic tear, it's going to take her and you're not going to know it."     

After the doctor walked out of the room, Nels was holding Amelia and staring at her through sobs... I looked out over the city and it was getting busy; it was 5:00 so the workday was done.  I had just heard that I could wake up tomorrow and my daughter could be gone...how could it be?!  Her life has hardly begun!  But, life goes on... Through many sobs and tears, we finally made our way home. 

Today...  this last week has been a whirlwind.  On Friday of last week, they wanted to admit Amelia to regulate the new blood pressure med they were putting her on, and then they decided to back off a little and first start her on a "beta blocker."  In layman's terms, I understand this will loosen up her vessels so that there's not so much pressure on the aorta.  The plan is to eventually start her on the blood pressure med (formulated for her size, but used frequently in adults).  Studies have shown that using this particular medication has given them some good results with patients diagnosed with Loeys Dietz Syndrome (LDS).  LDS has become a common term around here in the last few weeks.  Along with a few other characteristics, this heart issue leads them to believe Amelia has a connective tissue disorder, most likely LDS.  The blood work has been sent in and we will wait anywhere from 12-24 weeks before we know if this is, in fact, what Amelia has.  Therefore, at this point, they are treating her as such.

On Tuesday, we are going to get a second opinion from another cardiologist in the same office.  In fact, I was also able to connect with a genetics counselor from John Hopkins this week who works closely with the Dr. Dietz.  She gave me a phone number for the cardiologist to be able to contact Dr. Dietz directly!  Our Great God at work!!  

This week Amelia had occupational therapy on her hands and it went so well.  Nels and I were both very encouraged.  On Wednesday, Amelia had her last cast put on and was fitted for braces.  That appointment also went very well.  We will be revisiting the casts at another time, but for now, we are going to celebrate when that last cast comes off!  The bad news was that the braces will be on around the clock (except for baths) indefinitely.  The right foot is giving them a lot of trouble and until she has surgery on that foot (tendon transfer) she will need to be in braces.  Typically, they do not like to perform that surgery until the patient is about 5 years old, but in Amelia's case they will most likely do it a little bit sooner.  According to Dr. K., the tendons and bones have to grow in able to work together to accept each other.  However, my perspective has certainly changed.  We'll deal with braces as long as we have our little girl!  That's what matters most!

Removing the casts...just relaxing!  I'd say we're getting used to the routine!  :)

Lookin' good!

To end the toughest week in our lives, we celebrated Amelia's baptism this past Sunday...this was not by accident.  It was an absolutely beautiful service and without a doubt, I could feel God's presence.  As I looked out over the congregation, all I saw was love and care and support.  Then seeing our friends and family praising God with us for our precious Amelia meant more to me than words could ever express!  I realized at that moment...this is what it is all about.  God's plan for our lives could be drastically different than we ever planned or imagined; I NEVER thought from the ultrasound at 20 weeks that this journey would take us here, but I have come to believe (even when it's so hard) that God has a good plan.  Along each turn I have thought to myself, will I really be able to keep saying this if things take a turn for the worse?  I have to believe I will.  That doesn't mean it's easy and that's why I also believe this would not be possible without SO MANY lifting us up in prayer!  A line from one of my favorite songs right now, Oceans by Hillsong United, "Where feet may fail and fear surrounds me, You've never failed and You won't start now..." 

My dear blessings!!
"We want to do a silly one!"
So thankful to be celebrating with Gigi!  Great Grandma is 97 years old and Amelia almost 97 days old!  God is good!

Leaving you with a couple thoughts.  My mother-in-law introduced me to this book, Mo - A Loeys Dietz Syndrome Memoir.  This book was written by Kate Jurgens, whose daughter is 17 years old with LDS.  This is a quote from her book...

"So many activity restrictions...had lead to one of Maureen's deepest pleasure discoveries - reading.  Amelia Earhart captured her vibrant imagination and inquisitive mind.  'Mom, Amelia was so brave to learn how to fly.  She went ahead and did things people thought she could never do.  I don't know if I could be that brave.'" 

Psalm 61 has now become very special to us; it was the scripture at Amelia's baptism... 


Hear my cry, O God; 
listen to my prayer
From the ends of the earth I call to you,
    I call as my heart grows faint;
    lead me to the rock that is higher than I.
For you have been my refuge,
    a strong tower against the foe.
I long to dwell in your tent forever
    and take refuge in the shelter of your wings.[b]
For you, God, have heard my vows;
    you have given me the heritage of those who fear your name.
Increase the days of the king’s life,
    his years for many generations.
May he be enthroned in God’s presence forever;
    appoint your love and faithfulness to protect him. 
Then I will ever sing in praise of your name
    and fulfill my vows day after day.

Lead me to the Rock that is higher than I, dear God...




2 comments:

Kori said...

Julie, God never does anything by accident. Amelia is beautiful and precious, a gift given by our good God. Whether she is yours for 1 more day or many many more years. She is His eternally and He will never let her out of His hands.
Love and prayers,
Kori

Shirley Ensing said...

Thank you Julie for sharing your deepest feelings during a time of so much sadness and hurt and yet you hold on to God. Our beautiful Amelia. We pray for Amelia and your family every day and throughout the day "Even before she was Born". We knew she would be a special little girl. But nothing is impossible to our God and He is there right alongside of you and Nels and the children - we see His peace in both of you. We are walking the journey alongside with our God. Hugs-Mom and Dad Ensing