11 Months Old Today!

Audra is 11 months old today!! It is hard to believe. We have had a bumpy road but things are going well. Audra has a cardio appointment on Friday, and hopefully there will be no news from that. We will update more after that.

In the past month, Audra has been busy. She has cut three teeth with another on the way shortly, she started crawling, she officially says mama :) and she is looking less like a baby and more like a toddler. We are so proud that she is doing so well and feel so blessed. We count our blessings every day!

All the best!

Congenital Heart Defect Awareness - Day 8

Happy Heart Day!  We hope you make this a special day and remember those whose hearts are not as healthy.  On the final day of Congenital Heart Defect (CHD) Awareness Week, we are bringing you some facts about CHDs - some you may know and some you may not.

Shaun White as born with a Tetralogy of Fallot, a CHD for which he endured two open-heart operations before the age of one.  This is the same CHD that our nanny's son has.  Our nanny told us a story of a man who was in his 70's with Tetralogy of Fallot (ToF) and never had any surgical intervention.  He only found out that he had ToF when he got his oxygen saturation measured and had lived his entire life with a much lower oxygen saturation level.

You never know who you will meet that has been affected by a CHD.  I personally know 3 friends, 2 friends from high school, and 1 sorority sister who all have a child with a CHD - that I did not know about before our daughter was born with a CHD.  This is in addition to those we have met because of our involvement in the CHD community.

John Ritter died of an undiagnosed CHD.

Max Page, the boy who played Darth Vader in the VW Super Bowl Commercial in 2011, has ToF and had surgery on the same day that Audra had her catheterization in June of 2012.

San Francisco 49ers quarterback Colin Kaepernick supports CHDs because his parents lost two babies to CHDs before they adopted him. Here is the story: Kaepernicking for Kids.

There is no known reason for most CHDs, including HLHS.  Greg Olsen, Carolina Panthers tight end, had a son in October of 2012 with HLHS.  Here is the story: TJ Olsen Comes Home.

Congenital Heart Defect Awareness - Day 7

Today is day 7 of Congenital Heart Defect Awareness Week and we are checking back in with Meghan Roswick.  Meg has provided a ton of inspiration over the past year for us through her public Facebook page.  We follow along with her and her normal life.  She is training now to run the Cincinnati Heart Mini Marathon, which is the same race my sister was training for until she broke her ankle.

Last year, Meg posted a video about a typical day in her life.  She has a very normal life for a college kid, which is awesome to hear.  In the video below, she shares her top 10 worst and best things about having HLHS.  It is great to see that she has such a positive outlook on life even after giving out the 10 bad things.  It also made my heart melt to hear that she got the okay from her cardiologist to have kids.

Congenital Heart Defect Awareness - Day 6

This is a special message from the CHD kids of C.S. Mott Children's Hospital.  If you watch closely, you will see Audra and her friends Wyatt and Aly.

We hope you enjoy this “Mended Hearts” Valentine Greeting a few days early!




GO BLUE!

Congenital Heart Defect Awareness - Day 5

Today we have another guest post from a heart mom, Christina, whom I met after we both found out we were having a baby with HLHS.  Christina has been there all along the way and her son, Wyatt, has faced many of the same struggles as Audra has.  Her post shows how supportive others can be, even if we have never physically met - it is what many refer to as the Heartland.  I am not happy that our children and families have had the struggles that we have, but I am thankful that Christina and her family are in our lives.  We look forward to getting our families together someday soon - perhaps this summer when RSV season is over :)  Love you and your family too, Christina!!  Here is her post:

Hope and What I Have Learned Along the Way

One thing that I have learned over the 15 months is the meaning of a Congenital Heart Defect.  I had no idea how common it occurs and the devastating effects it can have on a child’s life.  February 7-14th is CHD Awareness Week.  To be perfectly honest one year ago I was probably as unaware of what that meant as you may be.  15 months ago I got the most devastating news of my life; the baby I felt moving around in my belly had a heart defect and a very serious one Hypoplastic Left Heart Syndrome.  Sitting in the doctor’s office he described how absolutely devastating a condition this is for my child, (at least I think he did). I remember him saying that only half of his heart had developed and then I think I tuned in and out of what he was saying.  I remember my first question was what can I do?  His response was that there were three options: compassionate care, meaning after he was born do not medically intervene and say goodbye, we could abort, or we could try for the three staged surgeries.  I am not sure that that is the question I meant but it was not what I wanted a doctor to tell me.  All I knew is that my son deserved every chance we could give him.  Therefore, I went searching for some hope.

The first glimpse of hope was with the cardiologist and discussion of the amazing place just a little over an hour away from our home-Mott Children’s Hospital.  Ranked #3 at the time for its work on amazing little “victors”.

The second glimpse of hope came with the meeting of two little warriors Bowen (HLHS) and Nora (HRHS).  They had both undergone 2 of their 3 surgeries and were doing great!  They gave me a vision of what to hope for :)

My third glimpse of hope was Sister by Heart and Aly.  Sisters by Heart is an amazing group that supports newly diagnosed families of HLHS.  Aly is the daughter of Jenny Lincoln one of the founders of SBH, Aly has been through all three surgeries and is doing great!  Aly also went to Mott Children’s as well.

Finally, my other hope and friend is Lora and her daughter, Audra.  Jenny from SBH connected me with Lora whom was due just a couple weeks ahead of me and was set to have Audra at Mott as well.  Lora and I began emailing exactly one year ago this week, as crazy as that is.  Lora and I have made a connection as only heart moms could, and only someone who was carrying that same uncertainty while carrying her baby could understand.  I was lucky enough to be pregnant with my first child Marshall with my best friend Melissa.  We grew so close and I loved sharing that experience with her! I WONDERED HOW WAS I GOING TO DO IT THIS TIME? Thankfully I had Lora and eventually just 3 weeks before Wyatt was born, Audra to inspire and give me hope!  Audra rocked the Norwood and had gave me so much hope as I went to have Wyatt.  Wyatt and Audra have had many of the same bumps in their path and Lora has helped me so much along the way!  I Love You, Lora!  Thank you for being my constant connection and sounding board as moms who travel a different path along the way.  

Congenital Heart Defect Awareness - Day 4

Today is day 4 of Congenital Heart Defect Awareness week!  Thanks for staying with us.  Today we have our first guest post.  This is a post from Esther, who is a friend that we knew for years through my husband's work.  She has two wonderful daughters and her second daughter was born only a few months after Audra with a CHD.  They also went to Mott hospital at U of M and her daughter had the same surgeon as Audra had - Dr. Bove.  I am very sad that we had to bond over such difficult health issues for our daughters, but we feel blessed to have Esther and her family in our lives.  Thank you to Esther for sharing!  Here are Esther's thoughts:

Congenital Heart Defect.  These words are usually meaningless until a doctor uses them to describe a problem with your unborn child.  Then those words stop you in your tracks and just about stop your own heart.  I heard these words used to describe a problem with our daughter at 20 weeks gestation.  Our precious girl was born with an atrial septal defect (ASD) and a ventricular septal defect (VSD).  This basically means two holes in her heart.  We were blessed to be cared for by a wonderful surgeon and incredible hospital, and at three months old my daughter had open heart surgery that saved her life.  Tears of joy fill my eyes even now as I recall how my champion 8 lb baby girl went through more than I could have imagined, and came out better than ever!  My family and I are so grateful for other CHD parents that prepared us, supported us, prayed for us, and cheered us on when times were tough.  I feel gratitude beyond what I can express.  The experience we have with our baby girl has made us different people, better people, and given us a CHD family.  Our CHD family has inspired us and created a community of understanding as we all take the journey together toward healthy hearts.  There are thousands of us with similar stories and wonderful children that have made our lives worth every minute.  A million thanks to the researchers, doctors, nurses, hospitals, care givers and families who have sacrificed so much for the congenital heart!  Bless you all!

Congenital Heart Defect Awareness - Day 3

A new heart warrior that we have "met" over the past year is Bill Coon.  Bill  was born on April 24, 1989, Bill Coon Hypoplastic Left Heart Syndrome.  His parents were told that the only option was a heart transplant and Bill had 21 days left to live.  If they waited longer than 21 days, the rest of his organs would begin to fail.  In the last hours of his 21st day, the phone rang with a donor from Canada. That night Bill became the fourth infant to receive a heart transplant in the Midwest, and the eighth in the nation.

Over the years, Bill did not suffer any complications. On June 8, 2009, he was rushed to the hospital where he was diagnosed with end-stage heart and kidney failure. He later spent 70 days in the Intensive Care Unit awaiting his second heart and first kidney transplant. His life was saved on October 21, 2009.

Bill wrote a tell-all memoir, "SWIM: A Memoir of Survival" which provided vivid details of his experiences.  It was very enlightening and difficult for me to read his memoir.  But it provides such a unique perspective and I couldn't put it down.  Of course, we hope and pray that Audra will not need a heart transplant but it is always an option that may be on the table.

We have an autographed copy of his memoir with a message made out to Audra.  He is wise beyond his years.  Below is an excerpt from an email that he sent to me:

On a deeper note, you mentioned your constant questioning of her future and if you are making the right decisions. A huge part of that speech that I never presented in Michigan was about not thinking about tomorrow. You need to focus on today. Focus on finding the beauties and happiness in today and allow Audra to find those beauties and that happiness. Overall, you need to allow her life to dictate the course of her illness as opposed to allowing her illness to dictate the course of her life.

Here is an introduction to Bill Coon:

Congenital Heart Defect Awareness - Day 2

Over the past year, one of the biggest sources of inspiration has come from other families who have gone experiences similar to ours.  If you have been reading the blog all along, you will remember Jenny and her daughter Aly.  Jenny was the first heart mom that I contacted after getting our baby girl's diagnosis and wow, did she make such a difference.  She set us up with Sisters by Heart, which is a group that sends out care packages to HLHS families and has a blog that provides resources for HLHS families.  She also answered tons and tons of my questions early on and has continued to support us throughout our journey.  Her blog postings and Facebook updates are constantly making me tear up and keep hope.  Thanks to Jenny and her wonderful family for providing inspiration to us!

Congenital Heart Defect Awareness - Day 1

This year, Congenital Heart Defect Awareness (CHD) week has a much different meaning that it two years ago and even one year ago.  Two years ago, we did not even really know what a congenital heart defect really was.  Last year, we looked to find hope as we anxiously awaited the arrival of our little girl with her own CHD.  This year, we only need to look to our little Audra to see how strong someone so little can be and how much hope we can have.

Today Audra decided to celebrate CHD Awareness Week by officially crawling!  She has been on the move by rolling all over the place and creeping forward.  But today, she seriously started crawling.  As she gets faster and more mobile, her older sister is getting more and more concerned because she is having to share more and more with Audra.  We are still working on sharing.  We take things one day at a time and celebrate each moment.

Of course, we do not know what the future holds, but we feel very blessed given all that our little one has been through and how well she is doing.

All the best!

Congenital Heart Defect Awareness

With February being Heart Health Month and February 14 being Valentine's Day, it is only fitting that February 7-14 is Congenital Heart Defect Awareness week.  In many states, there have been proclamations to raise awareness for this week.  Michigan is one of these states!  This is copy of the actual signed proclamation from Governor Snyder.

Please help support Congenital Heart Defect Awareness!

More to come!