Thursday, February 10, 2011

Could It Be?

Could it be?  Has it REALLY been 3 months since I last posted?  Where has the time gone?  Since my last post we have celebrated Thanksgiving, Christmas and New Years...and here we are, just about ready to celebrate Valentine's Day.  What does Valentine's Day mean to you?  For most of us it means celebrating with a romantic dinner, the giving of cards and presents and spending time with the one we love!  Since Lily was born though, Valentines Day, February 14th, has taken on a new meaning.  February 14th is the end to a week of raising awareness for Congenital Heart Defects.  Every year, from February 7th through the 14th, parents and families of children born with a congenital heart defect do everything in our power to get the word out.  We ask for proclamations from our states and cities, we hand out stickers and pamphlets, we flood Facebook with messages of awareness, we post stories about life with a child who has a congenital heart defect. How many of you knew what a congenital heart defect was before Lily was born?  I'm sure I had heard those three words in passing, but I had no idea what they meant.  Those three words changed our lives!

Although many congenital heart defects are detected at a 20 week ultrasound, many are gone undiagnosed until after birth...some too late.  Here are some things you might not know..

*  Congenital Heart Disease is considered to be the most common birth defect, and is a leading 
cause of birth-defect related deaths worldwide.

*  Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

*  Congenital Heart Defects affect nearly 40,000 babies each year in the United States alone.

*  Nearly 4,000 babies born with a CHD will not survive their first year of life.

This past weekend Mazzuchelli Catholic Middle School held their 1st Annual Mini-Dance Marathon.  Loras College in Dubuque does a 12-hour dance marathon in April, and as an extra fundraising opportunity they invite local schools to host their own dance marathon.  Schools all vary in how they put their together.  Some have fun days with activities, others have dances.  Mazzuchelli celebrated Catholic Schools Week with a Penny War between the grades!  This is where we did the majority of our fundraising.  The week culminated with our mini-dance marathon held on February 4th.  The Loras College students helped to get the students motivated, they helped sell pizza, gave out prizes, etc.  We could not have done it without their help.  And the kids who came had nothing but good things to say.  They had a blast dancing for the kids and the Children's Miracle Network.  All in all, they raised over $2600!  How awesome is that??!!  I couldn't be more proud of my students, my school and the dedication that many of our kids put into this to make it a success!

Since it has been three months since I have last written, we have a lot of little things to share, some good and of course some not so good.  To start with both girls have been really healthy this winter (knock on wood).  We've had the runny noses and coughs but nothing too serious.  We think Ellie had a slight touch of the flu about a month ago, but other than that nothing that required any Dr visits.  However, we have been to the Dr for other reasons.  Since last May, we have been taking Ellie in to see Keystone (our Area Education Agency about every couple months.  We were concerned about her speech and her pronunciation.  I never thought about the connection to her hearing.  They did a hearing test and she passed some and failed some.  This last time we were in she refused to do any of the tests but they noticed that her ear drums were not vibrating like they should so she was referred to our pediatrician who said she has fluid build up in her ears.  They then referred us to an ENT where she again refused to participate in any of the tests with the audiologists.  They looked at her ears again and both were 100% filled with fluid that looks as though it has been there for a while.  He also noticed that her adenoids and tonsils were extremely enlarged.  That might explain why we can hear her breathing when she sleeps from down the hall!  So the plan is to have tubes placed in her ears to drain the fluids and to remove her adenoids.  We are hoping this solves her hearing issue which will then lead to better pronunciation in her speech!!

On a more exciting note, I am going to be an aunt again!!  My brother and sister-in-law are expecting in July. They already have one little girl, Emmy who is 2.  My parents have three granddaughters so secretly I am sure they are all hoping for a boy, but really as long as the baby is healthy, everyone will be happy!!

Lily's next cardiology appointment is in April.  We get to do an unsedated echo since she did fine the last time.  That is nice since it means we don't have to leave Dubuque at 5:30 to get there!  She will also have chest x-rays and an EKG.  We are hoping that her saturations remain in the mid 80's.  The lower they go the closer we are to her next surgery and we hope that she can wait until after she is 3 years old.  Please pray that things have remained stable for her over the past 6 months.  We haven't noticed any changes in her but that doesn't mean things haven't changed!

I have to leave you with a short video...if you know Lily at all, you know she LOVES food!  So when she is falling asleep at the supper table you KNOW she is tired...Enjoy!!

The Duves


  1. Saying lots of prayers for good news at the cardiologist and for all of the other procedures about to happen!

  2. Ola tenho um filho com criss-cross heart , aqui no Brasil eu encontrei apenas 4 casos , gostaria de conversar com você , por favor entre em contato comigo .