O H S: lesson #1

(As promised last week, today I begin a series about what I learned over the past few months prior to my son’s open heart surgery.  Some are life lessons, some are things I learned about others, including my spouse…and probably most importantly, what I learned about myself.)

Lesson #1: Advocacy

Advocacy is the act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.

Being a parent instinctually includes the role of advocate.  Parents advocate simply by being present in a child’s life and building relationships with others that their child interacts with (e.g. daycare, doctors, teachers, etc).  They also advocate by entering into a dialogue with those individuals. Through this dialogue parents begin to articulate their needs, desires, and dreams for their child. And finally parents advocate in the more formal sense. If there is something their child needs that she is not getting or something happening that needs to change, then parents take action.

After an almost 13 year career with a non-profit organization that works with children and families, I know a thing or two about advocacy.  I have pleaded cases before judges, reached out to caseworkers and probation officers and tried to influence parents in attempt to get services and care for the children who have crossed my path.  There have literally been hundreds of children in my professional life that I have advocated for.  

On May 10, 2011, I was so very grateful to have had those experiences and the skills I learned along the way.  We’d been seeing the cardiologist since EIV’s birth for a VSD (hole between his ventricular wall), but this visit was different.  EIV had only gained 1 ounce in a five-week time period.  They instructed us to stop nursing, begin fortifying my breast milk for added calories and they would see us in 5-6 weeks.  We left with those instructions….that was it?  Needless to say, it didn’t sit well with me.  How could they tell me that my son was showing the initial signs of congenital heart failure make major changes to his feeding schedule and then not see us again for 6 weeks?  He was 5 months old at the time.  Do you know how much a 5 month changes in 6 weeks?   After a total freak out phone call to my cousin, I called and made an appointment with the pediatrician……let the advocacy journey begin.

I then became the advocate to fix my son’s heart. The next four months were filled with:

·         Numerous visits with the pediatrician, cardiologist, surgeon, ENT, GI docs, etc.

·         phone calls to doctors, nurses, family, friends

·         a notebook to track times and amounts of feedings,

·         an excel spreadsheet to track weight gain (or lack thereof),

·         securing the opinion of a heart surgeon in Michigan,

·         another excel spreadsheet to determine average daily consumption,

·         praying, praying, praying, praying

·          a ‘novel’ documenting every detail of EIV’s symptoms,

·         another excel spreadsheet to track medication dosages

·         a heart catheterization

·         the creation of a Caring Bridge Web Site

·         x-rays, blood work….more blood work

·         lots of confusion and crying  

·         Begging God to give me the answers and words

·         a diagnosis of failure to thrive

·         tests to rule out anemia,  thyroid disease, GI track issues, reflux, swallow issues, a laryngeal cleft, cystic fibrosis

·         Addition of formula AND rice cereal to my breast milk

·         A four day hospital stay (for no reason at all!)

·         Frustration, disgust, venting and yelling

·         Securing the opinion of a pediatric heart surgeon at Children’s Hospital in Boston

·         Videotaping EIV’s symptoms

·         Telling everyone I knew how frustrated I was…and how badly I wanted my baby fixed over and over again EVERY DAY (bless you all for listening to me!!!)

·         Securing EIV’s medical records

·         Joining a blog/community discussion board for parents of CHD babies

·         Recording his breathing on my phone

·         Soliciting the advice of my friend’s neighbor, who happened to be an adult cardiologist

·         Praying, Praying, Praying, Praying

·         Telling the doctors over and over and over and over again that I KNEW it was his heart and begging them to fix it!

·         And many other things I’m sure I’ve forgotten (a.k.a. blocked from my memory!)

And thanks to these advocacy efforts….on September 14, 2011, EIV FINALLY had his open heart surgery!   

I didn’t do anything special.  I did what any good, responsible mother would do. But what I learned was:

1.       I will literally DO ANYTHING for my children

2.       I am stronger and more tenacious than I thought I was

3.       The heart surgery WAS EXACTLY what EIV needed

4.       When you believe in something, NEVER give up!

5.        I really respect parents who stick up for their kids

6.       Doctors don’t always know more nor better than parents

7.       Advocacy doesn’t always mean that you are right

8.     Trust that the Lord knows exactly what He is doing

9.       I can plead a damn good case when I need to

10.    Patience goes a long, long way