One Year Ago

And so they start - the posts reflecting back on what was happening one year ago at this time. It is hard to believe that a year has almost passed since Audra was born but we have been given many blessings and feel very fortunate to be where we are.

One year ago today my oldest (and only at the time) daughter had a fever because of a virus. We were nervous that everyone else was going to get sick but luckily we all avoided it. I had had a non-stress test and passed despite failing previous tests. My parents were in town helping out and waiting to take care of our older daughter while my husband and I were at the hospital.

We all went to bed and then at 2:30 am when I got up to use the rest room, my water broke. I walked into the bedroom and woke up my husband. I told him that my water broke and we had to go to the hospital. He responded "now?" It was classic but I did just wake him up from a nice deep sleep. Anyway, it wasn't the first time I had seen Ann Arbor at 3:30 am :)

When we got to the hospital, we thought that I may need some medicine to help things progress along. But fortunately, they were not in any rush and I spent most of the morning relaxing. In fact, the resident on call in the morning let me eat a big breakfast. She must have known that I had until the afternoon and ice chips wouldn't cut it. I also blame her for introducing me to the yogurt parfait at the hospital, which was my breakfast for the entire time we were there and I still eat nearly every morning :)

Anyway, tonight was filled with present wrapping, cake making and decorating so we cannot complain one bit! It has been a very long year that has gone by so quickly. We treasure each moment!

Thank you for your love and support over this past year! It has really meant a lot to us!

Update

Sorry for the delay in an update.  Audra had her appointment with her cardiologist last Friday.  We didn't get to update after that because the stomach flu hit our house that same day and we have been recovering and getting back into things since then.

The cardiology appointment went well.  Audra's heart function looks good and she cooperated for most of the appointment.  We are on track to have her third surgery about a year from now - around her second birthday.  Of course, Audra is in control of this and may tell us if she needs to have this surgery sooner.  But for now, we are planning on March of 2014 for her surgery.  Some centers do the third surgery later, but UofM has not found compelling reasoning to do so.

The stomach flu struck my husband, older daughter and nanny first.  Audra only had a mild case and didn't vomit.  She did loose weight but we kept her from getting dehydrated   She is now back to gaining weight and eating like she is making up for lost time (or perhaps just lost weight).  When everyone else was on the mend, I got it.  But it was short lived.

Audra is cutting another tooth and may be getting two more on the bottom jaw.  She has been handling all these new teeth pretty well, considering she has gotten 4 teeth in 2 weeks with potentially 2 more coming in.  She is really a tough little cookie :)

We are also happy to report that Audra had her last shot against RSV for the season.  It isn't a fun trip into the doctor's for that (although our older daughter always wants to go and get a shot of her own).  Audra will have to get the monthly shots again next winter but we are glad that the season is almost over and we have fared well.

We cannot believe it is already March.  Soon enough we will be starting the "one year ago today" type posts.  Things have changed so much for us in the last year that it will be great to reflect on the differences from a year ago.

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.