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!

10 Months Old

It is hard to believe that Audra is already 10 months old (and two days)!  I am sorry that there have not been any updates in a month.  No news is really good news!  We are busy living and enjoying life.

Both my husband and I had the time off between Christmas Eve and New Year’s Day.  It was so nice to be able to relax and spend quality time with our family.  We had a very Merry Christmas indeed.  We had family over and the girls had a blast with their cousins!  Our older daughter had such a great time on Christmas Eve that she slept in on Christmas morning until 9:45.  Audra was up early to celebrate her first Christmas and was going down for her nap at that same time.  Luckily, our family was not scheduled to come over until the afternoon.

With the snow that fell during our break, the entire family was able to get outside and ride on the sled from Oma and Opa.  Both of our girls love the outdoors, which I credit to my husband and also our nanny who both take the girls out frequently. 

On New Year’s Eve, we reflected on the year 2012 was for us.  As you know if you have been reading this blog, 2012 was one of the best and worst years for us.  It was a rough road but we could not be happier or feel more blessed than we do today.

As we noted in our last post, we had hoped that 2013 would be a year without surgery for our family but my sister already required ankle surgery this year.  She broke it in a fall just before the new year and had to have surgery on January 2nd.  We are happy that the surgery went well and she is recovering, slowly but surely.

Audra continues to do well.  She is still growing like a weed and is sleeping well too (although my husband might say otherwise).  She can sit up on her own when she is laying down now but she still prefers rolling to crawling.  She definitely likes to do things her own way!

Don’t forget that February 7-14 is Congenital Heart Defect Awareness Week.  Stay tuned for that!

9 Months Old

It is hard to believe that Audra is already 9 months old. Time is really flying and it has been so long since we have updated. Sorry!

All is well as we get ready for Christmas. We did sleep training during the long Thanksgiving weekend after getting the thumbs up from our cardiologist. Audra took to it like a champ. The first night she only woke up two times and after three nights, she was sleeping through the night. Since then, we have all been getting more sleep. It has been great.

Audra had her 9 month check-up and is doing well. She is gaining weight well and up for feeding herself more and more.

She prefers rolling to crawling and can really get around.

We have so much to be thankful for and we are really looking forward to celebrating Christmas! We hope you have a Merry Christmas and a great 2013! We are hoping for an uneventful and surgery free 2013 :)

All the best!