Friday, August 13, 2010

Happy Healthy Heart

As my mom recently said, "There are some things you will NEVER forget."

Nine years ago today, Ester went through open-heart surgery at Children's Hospital in St. Louis.  She was 5 months old. 
























It all began on the day she was born.  It went from such a joyous occasion to quite the scary one.  One bad thing lead to another...she had a knot in her umbilical chord and had her forehead lanced open when the doctor was performing a c-section.  It was an accident, but scary none-the-less.

Within  hours, I had hemorrhaged and was receiving a blood transfusion (2 pints) while a pediatric cardiologist was standing over my hospital bed rambling off the words...congenital heart defect...congestive heart failure...

Ester was born with a congenital heart defect known as VSD (Ventricular Septal Defect - a whole in  her ventricle wall that separates the two chambers.) It isn't a huge heart defect, but her hole happened to be a pretty big one and she happened to have two.

It was also a big enough problem to have classified her as being in congestive heart failure at birth.  Medications kept her afloat for awhile and she barely gained 4lbs in five months; an acceptable amount for surgery. 

Was I scared?  Hell yes! 

Was I brave? Had to be! 

I had my faith and  parents to rely on.  We were very familiar with all of this since my baby brother was born with a congenital heart defect, one much worse.  He was born with Tetralogy of Fallot.

(Never finding the gene, doctors do believe it is genetics.)

My parents came and stayed with us in St. Louis.  I'm so grateful to have had them there.  Their support meant so much to David and I. 

Below is a picture of baby Ester with David the night before in her hospital room.  The picture on the right is  my mom and Ester the morning of...waiting for the staff to come and get us.


I remember every detail of that day.  I'll never forget them. 

Once her surgery was complete, I remember sitting and waiting in the PICU waiting room....waiting for the go ahead to see her.  I had broke down crying.... knowing.... that for how sick she was at that exact moment, it was the healthiest that she had ever been since she was born.

And then we were able to go in...at first, only one at a time.


When I first laid eyes on her...they told me not to talk too much; not to touch too much.  They said I would increase her heart pressure, something she didn't need at the moment.  Then I slowly whispered her name, and she started to moan and whimper as I was trying hard not to cry too loudly. 

In reality, I wanted to yank every single tube from her little body in order to scoop her up and run like hell out the door.  But, I knew that all of those tubes and machines were actually keeping her alive. 

That was a heavy cross to carry.

The next two photos are of baby Ester in my parents' arms ...and  in the wagon that I pulled her around in each day during recovery.

The hospital had a beautiful garden on the rooftop of the 8th floor.  We spent many hours out there enjoying the fresh air.  Every time I saw a life flight come in, my heart skipped a beat.  There were so many sick children at that hospital!


She LOVED her right thumb to suck on. Prior to the surgery,  I had asked the anesthesiologist if they could possibly put all i.v.'s into her left hand/arm in order for her to suck away.  They couldn't promise it, but they sure accomplished it! 

She was also a tummy sleeper.  One morning, when the surgeon was making rounds, I commented on how she wasn't able to sleep soundly because she was on her back.  He said to go ahead and flip her, "...she will let you know if she doesn't like it," he replied to my concern about her sore chest wound. 

I was so scared to flip her...how do you hold her?...where do you place her?...I couldn't wrap my brain around it.  I had the nurse do it the first time. 

Ester gave a small scream, found her thumb, closed her eyes, and then drifted off into slumber for three hours...a first since surgery day.


Her recovery was a rough one.  Her one patch partially tore open....which happens with the youngest of open-heart patients from time to time.  (It took 5 years for the heart tissue to grow over the patch and completely close up.) 

She also developed  a life threatening problem, Pericardial Effusion, This was cause for an emergency return to the hospital and an additional 5 night stay.  In many ways, she was actually much sicker and closer to death with this issue.

Thank God for mommy instincts.  We had only been home a few days when  mine told me that something was terribly wrong with Ester.  I took her immediately to her local cardiologist who determined what  the problem was and sent us racing back to St. Louis.

Only through the gift of grace did we get through that period in our lives.  Months later, on her first visit back to my parents', she took a great photo with my baby brother Mike.



(Poor Uncle Mike was also suffering from a case of poison ivy on his chest.)

This next photo is one year to the date that she had her surgery. 



To mark the momentous occasion, we celebrated with a special cake and ice cream.

Four years ago this month, she had her very first clean bill of health. We thank God for the modern medicine and technology that kept our child and my brother alive.


This is sweet Ester now, a happy and healthy nine year old  ...(big grin spreading across my face at the moment with tears in my eyes!)


Yes, Mom, some things we never forget.  And in the midst of our pain we will always find faith, prayers, family, and friends to help us through!

P.S. Anywhere Is by Enya, is Ester's favorite song.  So much so, that she asked me to make the word favorite big!

10 comments:

  1. Patty,

    Beautiful story of blessings and crosses. I am teary eyed. My oldest has a VSD that has never, thank God, effected her or required surgery. JIm and I talk often about how every family has their crosses and we would never want to trade ours for another. Grace is there when you need it right?

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  2. Wow, what a beautiful story! Thank you for sharing!

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  3. What a beautiful young lady!

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  4. Modern medicine is just amazing isn't it! Beautiful story, I love the picture of your parents holding your daughter. Ester is a beautiful girl!! Sarah had major hip surgery last fall and that was nerve-wrecking enough, I can't imagine heart surgery. God Bless your family!

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  5. Thank you for sharing this. It took me back down some difficult paths from the past. I know all too well what you went through. I have three children (two of my own and one that I took in) who have survived life-threatening congenital defects. (The youngest has EIGHTEEN birth defects.) Perhaps it will help you to know that all three are in their 30s and happy young adults. Now, my one healthy son, fathered two children with congenital birth defects, one so rare and so serious that only one doctor at Stanford University Hospital gave them any hope. She is now 15 months, starting to crawl, and looks like, even with some missing parts, that she will have a fairly normal life. Modern medicine is indeed amazing, but this took more than the work of modern medicine men. Even they recognize that.

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  6. Patty, what a great job you did putting your experience down for all to "see". What a true blessing "Ester" is. And my hubby has a matching zipper! I can't imagine going through the open heart experience with an infact. A husband was bad enough!

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  7. Thank you for sharing this lovely story of the sufferings and joys of the cross! Peace and joy to you on this special feast day.

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  8. Your daughter is beautiful, Patty. Thank you for sharing your family story.

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  9. God gives us the ones he loves a cross to hold, as a blessing to grow in him. Beautiful post! I just saw on Jens blog. Always love looking into other hs moms blogs for inspiration~ Catherine

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  10. what a wonderful testament to the love of our Lord, and how he carries us through our times of sorrow. thanks for sharing this about your daughter and your family.

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