The Year I Missed It

This is posted over at Down Syndrome Blogs:

Every year, I have celebrated Elise's Heart Day, except this one.  It has been 12 years since she had her open heart surgery repair.  Twelve.  She's 11.  It somehow slipped by me this year, as we were celebrating at the orthopaedist office being freed from her boot after breaking her foot.

When she was born, we were surprised by the fact that she had Down Syndrome.  She had 2 ultrasounds while I was pregnant, one to confirm that I was pregnant with her and one to tell us that she was a she and that she was breech.  At the second one, they tried to tell me that she wasn't as far along as previously thought...because she was so tiny.  And they spent an inordinate amount of time looking at her pinky finger.  When they finally confirmed that she had the usual 2 joints in it, they looked no further for any evidence that she wasn't perfectly normal.

Had they looked further, they probably would have caught the Down Syndrome.  Had they looked further, they would have discovered the mess that her heart was in.

When she was born, she was shuffled home with massive apologies for missing the Down Syndrome.  And by apologies, I mean my obstetrician almost wept for not catching it, when he suggested that "other people liked to adopt Those Babies" and we didn't have to keep her.

At the pediatrician, they seemed in over their heads in dealing with Down Syndrome.  They had to look up everything like she was a foreign object, rather than a standard issue baby.  At her 2 week check up, they caught a slight murmur and suggested that we go in for some testing and visit a cardiologist, "just in case the murmur didn't resolve".

Our cardiologist was the kind of guy that gives that vein of medicine a bad name.  He was arrogant.  He didn't listen.  He disrespected us at almost every turn.  I was still barely keeping my head above water with her diagnosis at 3 weeks out and didn't have the mental fortitude to slap him down or get another doctor.

After a sonogram of her heart and an EKG, we were graduated to a diagnosis of a small hole or two in her heart in the middle dividing muscle.  They still believed that they would resolve and she was sent home.

She was still a minuscule baby.  She hadn't hit 6 pounds yet and she hadn't gained back the weight she lost right after birth. 

By January, she still hadn't wrestled her way to 7 pounds, and she had a second routine cardiology appointment, and she was pronounced in Cardiac Failure.  Suddenly the medical world started literally buzzing around us.  We had to "buy" as much time as possible.  I was to pump and mix into the breast milk both preemie formula and corn oil to get her enough calories to "live until surgery".  We were praying for not only survival, but we were praying desperately for a few extra ounces of fat to help her withstand the cracking of her chest and the toll the surgery would take on her tiny body.  The pressure was so high, and she was so exhausted keeping her heart pumping, that I was literally pouring her high calorie potion down her throat with a syringe as she had no energy to nurse nor to suck on a bottle.

Because of her size, she needed to go to a hospital that specialized in heart repair surgery.  We were given the option of Vanderbilt and Cincinnati Children's.  We jumped at Cincinnati, as it was exceedingly reputable, and I had family there.  And not only was it family, but my uncle was a doctor, had the inside track on everyone's reputation.  Based on his research and advice we chose our cardiac surgeon.  And I cannot say enough good things about Dr. Peter Manning.  Not only was he stellar technically, but he was an amazing man with a warm and encouraging bedside manner.

At the EKG and sonogram there at Cincinnati, we discovered that the holes were bigger than originally thought, and that there would be a need for patching, not just stitching.

 

And I noticed for the first time that a heart ultra sound looks like a butterfly.  And that as it pumps, it looks like it is flying.

They expected that her surgery would last 3-4 hours. It appeared to be a fairly easy patch job, with the only expected difficulty being that she was so tiny.  We had successfully clawed our way to 7 lbs, 3 oz...at 4 months.

The surgery lasted just over 6 hours.  They got in and discovered that it wasn't a simple patch job.  That both the EKG and the sonogram had missed just how many and large the holes were.  That the holes were responsible for her having to work so hard to live...and why growing was simply a bonus miracle.  She was patched up for both an ASD (atrial septal defect) and a VSD (ventricular septal defect), and her mitral valve was also flapping loosely allowing the blood to wash back into the heart, and so he stitched that up as well, but he was very cautious in not allowing that to become too tight and cause any other problems that would lead to another surgery.  She still has a tiny amount of cardiac reflux to this day...but it's not slowing her down.

The real miracle is this:  Open Heart Surgery to correct malformations has only been performed since the mid 1950's.  Even into the 60s-70s, a child with Down Syndrome was recommended not to over-exert themselves as a primary form of treatment for heart malformations.  Into the 80s, doctors could and would routinely refuse to correct heart defects on the grounds that it was a wasteful surgery that was unwarranted.  There is even an article in the US National Library of Medicine which addresses the fact that parents were being steered away from surgery based on Down Syndrome as recently as 2001.

The year of her birth was 2002.  Her surgery was February 2003.

The surgery was visibly a success from the moment we saw her, we knew it to be so.  Before the surgery, she was white as porcelain, and had no energy.  She slept all the time.  She never attempted to roll over or do any milestones babies her age did.

When we saw her after the surgery, moments after being moved to the CICU, we saw pink cheeks for the very first time in her life.  We saw her fighting her restraints to yank off the breathing tube under her nose.  The nurse greeted us with "I swear, she is acting like she'd like to jump off the bed and run down the hall!"

And as soon as she got home, she a made up for lost time.  She couldn't get her eyes wide enough.  She couldn't try hard enough.  She couldn't LIVE enough.

And that was the first chapter of the butterfly that is Elise.  Since then, she has fought bigger and bigger battles, but thanks to that heart of courage of hers...she is always the victor.

The Words I Didn't Think I'd Ever Say

Today is another giant anniversary in our lives.  Today is the nine year anniversary of Elise's cancer diagnosis.  As I've shared before HERE and HERE, we did know it was coming.  And in knowing it, we literally were able to save her sight and very possibly her life.  A lot of miracles were "activated" to get us to the point of diagnosis.

Cancer steals time and peace.  Cancer and the medicine used to kill it causes brain damage and mental retardation, despite the lives it can save.  We will never know who Elise would have been without it's impact, I am reasonably sure that I am glad I don't know, or I may have become bitter...despite all she may have lost, she is a sharp girl.

With Cancer comes a very real look at the loss it can cause.  And while we were blessed, the possibility loomed very large.  I have hesitated ever sharing these thoughts, as I didn't feel "qualified" because Elise was not taken from us...but I felt compelled to share them this last week privately.  And I am feeling the pressure of needing to put them out there for others to read.

I have stared down the very real possibility of losing one of my children. And I would like to share with you 3 things I recommend from my own experience:

Despite feeling the need to hold life together on your own, do not fold to that temptation. Ask for help from willing friends and lay secure in the knowledge that God will fill in the holes of your failures with your other kids...just as he will when you are there 100% of the time.

Say your greatest fears aloud with your spouse. Your fears will poison your relationship if that is allowed to grow and separate you...The planning for the worst and the holding hands through the darkest hours is what ends up being the most comforting. Sadly, what damages marriages with children with special needs and children who escape to be with Jesus early is the cracking and emotional separation.  Ironically, deciding with my husband where we would bury our daughter if she didn't make it through her battle with cancer, gave me a significant amount of hope and bound me to him, in a deeper way that pleading for hope and platitudes would never have.

And the last piece of advice? Meditate over and over the times and moments when God moved in your life before. Count all his previous blessings to you...to know that the dark of now, is not his lack of a plan for you or a lack of movement now. Scream and rail against Him, ask him why. He is more than strong enough to take it. David did both, constantly in Psalms... And he was still a Man After God's Own Heart. And God always answers, in one way or another, I have seen it to be so, over and over.

PSALM 77

¹ I cry out to God; yes, I shout.
Oh, that God would listen to me!
² When I was in deep trouble,
I searched for the Lord.
All night long I prayed, with hands lifted toward heaven,
but my soul was not comforted.
³ I think of God, and I moan,
overwhelmed with longing for his help. Interlude

⁴ You don’t let me sleep.
I am too distressed even to pray!
⁵ I think of the good old days,
long since ended,
⁶ when my nights were filled with joyful songs.
I search my soul and ponder the difference now.
⁷ Has the Lord rejected me forever?
Will he never again be kind to me?
⁸ Is his unfailing love gone forever?
Have his promises permanently failed?
⁹ Has God forgotten to be gracious?
Has he slammed the door on his compassion? Interlude

¹⁰ And I said, “This is my fate;
the Most High has turned his hand against me.”
¹¹ But then I recall all you have done, O Lord;
I remember your wonderful deeds of long ago.
¹² They are constantly in my thoughts.
I cannot stop thinking about your mighty works.

¹³ O God, your ways are holy.
Is there any god as mighty as you?
¹⁴ You are the God of great wonders!
You demonstrate your awesome power among the nations.
¹⁵ By your strong arm, you redeemed your people,
the descendants of Jacob and Joseph. Interlude

¹⁶ When the Red Sea^[a] saw you, O God,
its waters looked and trembled!
The sea quaked to its very depths.
¹⁷ The clouds poured down rain;
the thunder rumbled in the sky.
Your arrows of lightning flashed.
¹⁸ Your thunder roared from the whirlwind;
the lightning lit up the world!
The earth trembled and shook.
¹⁹ Your road led through the sea,
your pathway through the mighty waters—
a pathway no one knew was there!
²⁰ You led your people along that road like a flock of sheep,
with Moses and Aaron as their shepherds.

I have also decided that I would share with you the verses that I claimed for Elise when she went into cardiac failure...and at every surgery since.  I feel like I am sitting on a pirate cave of treasure, and I certainly have enough wealth to share...  You may need to claim them, too...I literally prayed each of these, for every one of her surgeries, with open hands knowing that her body would be healed in one manner or another, and that Jesus loved her more and better than we did. For one surgery I admit I literally wrote one on her in sharpie...

Matthew 8:13
"Then Jesus said to the centurion, "Go! It will be done just as you believed it would." And his servant was healed at that very hour."

Matthew 18:19, 20
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them.”

Psalm 42:8
"But each day the LORD pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life."

Mark 5:19
But Jesus said, "No, go home to your family, and tell them everything the Lord has done for you and how merciful he has been."

Mark 9:24
With tears flowing, the child's father at once cried out, "I do believe! Help my unbelief!"

Mark 10:16
Then after he had hugged the children, he tenderly blessed them as he laid his hands on them.

Mark 10:27
Jesus looked at them intently and said, "For humans it is impossible, but not for God. All things are possible for God."

Luke 5:26
Everyone was amazed and gave praise to God. They were filled with awe and said, "We have seen remarkable things today."

Luke 8:39
"Return to your house and describe what great things God has done for you." So he went away, proclaiming throughout the whole city what great things Jesus had done for him.

Luke 8:50
But Jesus hearing it, answered him, "Fear not: only believe, and she shall be made whole."

Psalm 34:4
"I sought the LORD, and he answered me; he delivered me from all my fears."

Psalm121
^"1 I look up to the mountains—
does my help come from there?
² My help comes from the Lord,
who made heaven and earth!

³ He will not let you stumble;
the one who watches over you will not slumber.
⁴ Indeed, he who watches over Israel
never slumbers or sleeps.

⁵ The Lord himself watches over you!
The Lord stands beside you as your protective shade.
⁶ The sun will not harm you by day,
nor the moon at night.

⁷ The Lord keeps you from all harm
and watches over your life.
⁸ The Lord keeps watch over you as you come and go,
both now and forever."

 

I realize that this isn't a particularly celebratory post.  But you have to understand, that this isn't a date that I actually celebrate, usually.  No matter if you know a health problem is coming or not, the words that it is here, will always take you to another dimension.  "Your child has cancer" will hit you like a sledge hammer.  You will feel like you blacked out.  Because your brain simply cannot take anymore than that.  Because I knew it was coming, I was able to move confidently forward toward treatment, but it was not easy.  And Elise was the 9th or 11th patient on the protocol we chose to follow.  Granted they had had success, but that's not a lot of track record.  90% success of 10 kids, still means they lost one...and that one might be yours.

 

But, please know that despite the very real desire to sink into oblivion, you must reach out and bind yourself to your spouse and your God.  They will help and support you.  And you will want your eyes open, whether to savour the last memories of your baby, or to remember the miracles that God does on your behalf.

 

 

Happy Heart Day!!

Happy 9th anniversary of Elise's Open Heart Surgery!

This is the day I was given my baby back, and the Downs became a side story in her life. I cannot believe it's been that long. And the 3 month, 6 pound pixie has become a force of nature that brings joy through like a steamroller!!

Before:

Now: 

Just getting better!!!  :)

heart reflections

Currently Miss Ollie Faith is getting ready for her heart surgery on June the 9th. I would consider it a personal favor if you would join me in praying for her.

I find myself so very anxious. Even though I know certainly that God will do His very best by her. I think I may be anxious for old, tiny Elise as much as Ollie.

Ollie has had a heart defect that was the first red flag to having Downs, when she was still in utero. They have know that this surgery would be necessary since she was only "half cooked". But she is growing like a weed and is deliciously pudgy and pink and deceptively healthy looking.

I had a couple of flashes of fear with Elise when she went in for her heart surgery. But when she went in, she was actively in Cardiac Failure. Her heart already had no place to go but down and the surgery could only be a good thing. We not only had no option, but it was visibly telling on her tiny body.

When Elise went in for her open heart surgery to repair her ASD, VSD, and Mitral Valve, she was a measly little 6 lbs. Barely. And at 3.5 months, that is not normal and not good. I had to pump breast milk, mix in preemie formula, and mix in some corn oil just for added calories so she maintain weight and wouldn't keep losing. Half the time, we had to wake her up and pour it down her throat with a medicine dropper. Nursing exhausted her. Her heart was working so hard just to keep her blood pumping she didn't have the energy to do anything. She would smile and snuggle, but she had to be woken up to do so. She would make little "murf"ing sounds of pleasure, but cooing was often hard for her. At 3 months she could not roll over because she didn't have the strength.

Her skin was waxen white. Her lips were the only pink in her face, and sometimes not even that.

She was so tiny and pale when I handed her to Dr. Manning at Cincinnati Children's Hospital. I sat wondering if the surgery would be too much for her tiny heart for 6 hours, 2 more than they expected. When they did the sonograms on her heart, even the day before in pre-op, her heart was so tiny that they could not see the extent of the heart walls that were missing. Rather than a few tiny holes that could be stitched shut, she required several patches of Dacron because the holes were so big, they could not be stitched.

But as Ethan said 3 days before the surgery, if God had told us before hand that he had a baby that he needed us to watch for a few months, we would have said yes. As I handed her to the surgeon, I offered her to the Surgeon as well, with open hands. And He gave her back. I remember all the dates when God has repeatedly given her back to us, and each and every one I treasure in my heart.

I pray for Ollie. I pray for miraculous healing. I pray for her physical strength. I pray for her spirit. I pray for her surgeon. I pray for the surgery assistants, nurses, doctors, and anesthetists. I pray for her family and friends as they wait during those long hours where they can do nothing but pray. I pray that they get to feel the gift of receiving their daughter healed. Restored to their arms, hearts, and lives.

It really is the most amazing feeling! Without wishing harm on anyone or their children, I hope you get to experience the weight and yet freedom of your heart when God restores something to you. It is utterly incomparable!

When we were brought back to the Cardiac Intensive Care Unit when Elise was released from recovery, she was kicking and PINK. She had blooms in her cheeks that we had NEVER seen. A nurse told us in passing that she thought that if she was not restrained for her own good that she would hop up from the bed and run down the hall... It was hard seeing her with the incision. It was sad to see her with all the tubes. It was not ideal. But to see such a miraculous change in her strength and health made my heart feel like it would burst. I will never forget seeing the life in her eyes that first moment. So bright and joyful, like she could FEEL God's powerful healing rushing through her new heart... It was so beautiful.

As I have said before, sometimes I wonder if those who have experienced God on such a deep level are kept a part from us because we could not comprehend the magnitude of God's very SELF. Elise has had so very many brushes with God. He keeps his hand on her hair...she seems to be so hyper aware of the magic and joy of any given day...the very Life that makes ours worth living...I am thankful that she shares what they think we can handle...because it fills my heart to the very brim with joy...and I am free.

Hearts

A friend of mine celebrated her daughter's Happy Heart Day today. It got me to thinking of Elise's. The eighth anniversary of Elise's open heart surgery will be on Sunday.

As I've said before, I am highly amused about how the "awareness" months lined up for Elise. And how God was amazing in showing me himself that week...

As incredibly terrifying that week was, it was a flash of God's vision. I've always been struck that God never shows you the WHOLE path set before you. I believe that he KNOWS that you would panic and NEVER see the beauty he has planned. In Psalm 119:105, he only offers a light to your feet. I would have to say that week was to us, that thunderclap with lightning that showed a tiny glimpse of the path ahead.

I have never been one to hide scars or be ashamed of them. And every single time I see the artificial clevage caused by her open-heart surgery scar, I celebrate the gift of that week. I feel like the gift of her heart was an opening of mine, too. Nothing ever felt the same after that week. It was never as dark again. My hands were opened, receiving and offering back the gift of Elise's magic. My eyes were opened to the treasure she was, the continuous gift she would be.

Scars can look like they were caused by tragic events, but sometimes, scars are evidence of a repair made. In Elise's case, it was a ASD, VSD, Mitral Valve repair. In my case, it was pride of control? Complacency? The desire of ordinary? I don't know, I think I learn more about it everyday. I know that the repair has caused me a heightened awareness of the greatness of God, a passion to see more of his light, a desire to hunt his lightning, a joy to walk his path.