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Wednesday, March 13, 2013

Heather's Annual Visit to Riley's

Heather with Dr. Leiser...12 years later

When Heather was just a little girl of 17 months, she somehow contracted E. coli 0157.  In one out of 10 cases of this E. coli, it goes into Hemolytic Uremic Syndrome.  Heather was that one out of ten.  Her kidneys were breaking down her red blood cells.  When we took her to the hospital her hemoglobin was at 5.5.  It should be about 12.  They told us a level of 5 is almost certain heart failure.  

Heather spent 19 days in Riley's Hospital for Children in Indianapolis.  They gave her blood 3 times.  There was no medicine they could give her to make her better.  It was just what they called a supportive cure.  In other words, they gave her blood when she needed it and waited for her body to heal itself.  

Her kidneys were damaged because of the HUS.  Your kidneys are directly related to your blood pressure.  Hers was very high, so they put her on Lisinopril when she was only about 20 months old.  Since she was too young to swallow pills, the CVS pharmacy in Kentland had to get instructions from Riley's of how to make her medicine into a suspension (liquid).  They had to order special equipment to make it.  She is still taking Lisinopril.  We take her blood pressure once a month and record it for Dr. Leiser.  We go to see him once a year at the Riley Outpatient Clinic; and today was our day.

The next two pictures are poor because I just took a picture of the pictures in Heather's scrapbook to include with this post.
Heather was in isolation because of the E. coli, so whenever she had visitors they had to wear gowns and gloves.  My sister, Aimee, stayed at the Ronald McDonald House nearby with Autumn, Meagan, Krissy, Erin, and Laura (who was only 2 months old at the time).  They came to visit every day.
This was Heather with Dr. Leiser one year later.

That experience was a very hard time in our life, but it was also a big growing time for us.  I can definitely say we grew spiritually as we placed our daughter's life in God's hands.  There was nothing we could do humanly to restore her health.  We were also learning to trust God to care for our financial needs.  It was quite an experience to sit back and watch God work.  People sent us money because they felt God's direction to do so.  We also learned to have a greater empathy for those experiencing a health crisis.  We had a better understanding of their needs during an extended stay in the hospital.  Since then, we've made many hospital visits, taking things like food, flowers, books, activities, money, or whatever we felt they needed.  Heather told me today that she doesn't remember anything about it except what she sees in her scrapbook, but somehow I think it made a lasting impression on her.  She's the first one of the girls to write letters or send a card or make something for someone that is sick or having a tough time.  She may change her mind before she grows up, but she's said for a long time that she wants to be a NICU nurse at Riley's when she grows up.  I think she would make an excellent one!


  1. Beautiful story with a very lovely ending to be written.
    I've said it before and will say it always: your family is amazing & I'm proud to say you're my friend.

  2. What a lovely post highlighting such a tragic time in your life, but your beautiful daughter is the proof of God's loving grace! I like the picture with the doc every year!