O.H.S. Lesson #2

Ed and I have experienced a LOT of trials in the past three years, culminating with EIV's surgery.

Lesson learned:  Our marriage can sustain anything.  I mean it...........anything! 

P.S. Love you honey!

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

17 lbs 12 oz

Today, we had our first follow up appointment with EIV’s cardiologist since his open heart surgery.  He weighed in at 17 lbs 12 oz….nearly a 2 pound gain since surgery.  The weight gain pleased us all, as our surgeon told us not to expect to see gain until 8 weeks post-op!  If this is a sign of things to come, I expect EIV to be in 18 month clothes by December. Considering how hard we worked for him to gain ounces in the past five months, this is a GREAT problem to now have!  He’s doing so well; we don’t go back for 6 months.

As we walked out of the office today, I realized that, for the most part, this chapter of our life is closed.  Closure for me also means time to reflect back on what was learned through this experience….so I’ve decided to dedicate a few blog posts to some of these lessons.    The first will focus on advocacy…….stayed tuned.

Exhaustion

Being a mom is exhausting! This is not a revelation to those of you reading this that are moms….but I just need to scream it out today. I’m tired. Really, really tired. 

My goodnight wish to every mom out there is peace, quiet, and some zzzzzzzz’s.

Four score and seven years ago....

Years ago today

at 2:30 in the afternoon

We welcomed a beautiful baby girl

with a head full of jet black hair

She weighed 6 lbs 14 oz and was

PERFECT in every way!

Today we celebrate all of the blessings

she has brought us in 7 years!

And THANK the Lord for her - every minute of every day!

Happy Birthday sweet E! 

We love you and are so very proud of the young lady you are becoming!



October 11th

Tuesday, October 11^th was a big day in our house.  One filled with joy, excitement, a ‘first’, and a touch of sadness. 

The joy arrived as an 8lb 2oz beautiful baby boy born to my brother and sister-in-law.  He’s gorgeous!

The excitement (as you saw in a previous post) stemmed from the loss of my daughter’s first tooth!

The tooth fairy’s visit to our home was a ‘first’.  He left a crisp, new one dollar bill (wow…times have changed since I lost my last tooth!)

And the sadness came when I packed up the pump for the VERY LAST TIME!  While this event was bitter sweet, because I was really DONE pumping, it still made me very, very sad.  Saying goodbye to nursing my little guy hurt my heart.

The Loose Tooth

It takes weeks of patience (from both mom & daughter) and persistent tongue work to pry out a tooth:

Watching the excitement on my 6 year old's face when her efforts paid off.....totally worth it!

Lovely Ladies

I don't believe it. Rather, I don't WANT to believe it

My baby girls are growing up.

E turns 17 in a few days!  Oops...I meant 7; 17 is the age of her attitude.  She is spunky, lovable and Beautiful!

H just turned 5.  In my heart, she will always be about 18 months old.  She is and has always been a mama's girl.  I hope (and pray) that never changes.    Oh, don't worry...she's got plenty of spunk  and beauty herself:

Regardless of their age....I'm just glad their mine, all mine!



p.s.  They will most likely be for sale or rent between the ages of 12-18 :) 

Commitment

You all know that I am married.


Betcha didn't know it was to this:

I filing for a separation really soon.

Meet My Posse

My leading man, Ed:

The Inquisitor, E

The Fashionista, H

The Heart Man, EIV

I’m a believer in Jesus Christ, a wife, a mother, a daughter, a sister, a friend, a project manager, a pet owner…….I grew up in a small town and lived in Las Vegas for over 8 years (and loved every minute of it…oh I miss the desert!)….I’m a control freak, loyal, grateful,  incredibly tenacious, a bit ADD, sarcastic, supportive, real and honest.  There’s no way I can explain who I am in a few words….so I’m going to let the evolution of this blog do that for me.  Sorry…no picture….I’m always the one behind the camera.  Gonna have to work on that.

I took the Plunge

Thanks to three of the most challenging years of my life, culminating with my 9 month old son’s open heart surgery, I have decided to take the plunge into the world of blogging.  Why you ask?  Like I don’t already have enough to fill my days.  Well, as most of you know, we created a Caring Bridge site to chronicle EIV’s journey to fix his heart.  I discovered blogging on the CB sight was fun.  It allowed me to express my happiness and joys, and work through my frustrations and confusion (a.k.a. free therapy).  It was also an incredible way to share the story of my family.  On top of all of that…it was ADDICTIVE!  I couldn’t stay away from the CB site for long; either to post or read who had visited.  It so much fun!!  So my crazy mind said…. “I certainly can’t let all of this fun end….why don’t I take on another project….I mean something has to fill the time left open since EIV’s heart is fixed”….HA!!!  Ya, I know…I’m Crazy!!

Ok…so what’s up with the name??  You may have heard the saying “My Cup Runneth Over”.  I totally stole it from the movie Hope Floats.  It is   a quotation from the Hebrew Bible (Psalm 23:5) and means "I have more than enough for my needs".  Although interpretations and usages may vary, for me, it means that my cup is overflowing with blessings, love, happiness, security and joy.   With that I decided to put a little spin on the saying….since I have spent the last four months focusing on EIV’s heart….to “My Heart Runneth Over”.

While I will always try to put a positive spin on the saying “My Heart Runneth Over”, let’s not forget that as a woman, wife, working mother, friend, co-worker, neighbor, sister, daughter, etc etc….sometimes my heart is ‘runneth over’ with stress, craziness, disappointment and sadness.  Hopefully that will lead to some interesting and ‘real-life’ posts. 

Oh, we will see where this journey takes us. Don’t know if the blog’s focus will be on my family, my spin on life, or something I haven’t thought of yet.  Hopefully it will be fun and with any luck I won’t lose you along the way. I don’t know exactly what I want to accomplish from this quite yet.  Come along for the ride…it could be fun!!!

Coming Soon:  A little more about me.