February is Heart Month

When I was younger memorizing days of the weeks, months and holidays, I always associated February with Valentine's Day.  Love, flowers, candy, red, pink, candy hearts.  February 2011 changed all that.  Now, February reminds me of Hailey and human hearts.  February is CHD Awareness month.  CHD stands for congenital heart defects.  According to the Children's Heart Organization, a CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.  There are many types of congenital heart defects, ranging from those that pose relatively small threat to the health of the child to those that require immediate surgery.

 Congenital heart defects are the most common type of birth defect.  1%....40,000 babies are affected by heart defects every year.  That number continues to grow.

With today's advancements in technology and medicine, many heart defects are discovered while the baby is in utero.  This can help prepare the parents and medical professionals.  It may alter the birthing process or timing or they may choose to deliver the baby at a different hospital. Unfortunately, we were unaware of Hailey's heart defect prior to her being born.  However, Hailey had a heart defect that is generally not immediately life threatening.  Finding out about it prenatally, would not have changed our labor plans or hospital.  Not all babies are that fortunate.

As many of you know, Hailey was born with a large VSD (ventricular septal defect) and several small ASDs (atrial septal defect).  To the neonatalogists, it sounded like a "slight" heart murmur.  However, the way it works, the larger the hole the softer the sound.  After being released from the NICU, we headed to Children's for an echo.  It is a very detailed (very long and frightening to already scared parents) ultrasound of the heart.  Her heart defect was confirmed and we were given the diagnosis and our action plan.  It was scary to hear that our daughter was about to have open heart surgery, but even more scary was telling us to go home...watch...and wait.  I'll never forget that St. Patrick's Day.  It was the day, I thought there was a chance I would lose my little girl.

Here is Hailey the day we found out about her heart defect and a picture of her one year later.

 We were incredibly lucky.  Hailey had a heart defect that statistically has over 99% (complication free) success rate.  VSDs are the most common heart defect that cardiologists see in infants.  20-30% of heart defects are VSDs.  Those statistics are supposed to be reassuring.  Now, looking back, they are.  Two years ago, they were very frightening, but we made it through it.  My daughter didn't have an option for surgery.  It was life or death.  I'm grateful for all of the research, all of the technology, and the dedicated medical professionals that made my daughter's surgery a success.  Hailey "should" not need anything else other than annual check-ups to verify that her heart is in perfect working order.

One week prior to surgery and the morning of her surgery.

Here are photos from the week of Hailey's OHS.  The first is the day after.  She was just removed from the ventilator and was starting to get hungry.  The middle picture was 2 days later when she was moved out of CICU.  The last photo is 3 days later.  We were already home!

This beautiful picture was one month post surgery.  Her coloring was better...she was gaining weight...she was eating...she had more spunk than every before!

This is Hailey on her one year Heart-versary and then today!

I cried the day before Hailey's heart surgery as I gave her a bath.  I looked at that perfect, smooth chest.  I didn't want her having a scar.  Quite vain of me.  Hailey's zipper scar is not viewed as a scar anymore.  It is a reminder of what saved her life.  It is a reminder of how strong she is and what she has been through (even though she will never remember it).  I am thankful for that scar.

So I celebrate CHD Awareness month by sharing Hailey's story and trying to share more information about this birth defect.  If you know of anyone that could benefit from this information, please share my blog. My friend, Leah, has compiled a fabulous list of blogs and links about other experiences with open heart surgery and suggestions for preparing here.

Happy Heart Month!!!

Why Blogging?

It started when Hailey was first born.  Everyone called.  Everyone cared.  Everyone was worried.  I couldn't deal with it.  If people came to visit, I had no choice.  I had to talk to them.  If they called....I had choices.  I could text...I could email.  I didn't have to "face" anyone.  They didn't have to see my sadness...they didn't have to see my tears...they didn't have to see my fear.  I, on the other hand, didn't have to see their pity...their worry...their sadness.  It was easier for me.  I could hide, so to speak.  I couldn't emotionally deal with it.  I was drained.  I was with Hailey every minute I could in the NICU trying to bond with this little girl that I didn't quite feel like was mine.  She wasn't what I dreamed of.  I would then head home and try to keep a normal life for the boys.  You see, they didn't know what Down syndrome was.  We weren't sure how to explain something to them that we didn't fully understand ourselves.  All they truly understood was that the baby sister they had been waiting for wasn't home.  I couldn't emotionally deal with any more.  That is when I created the "Daily Hailey".  It was a brief update of our little peanut with a daily snapshot (or two).  She had quite the following.  I think we were emailing about 40 people by the time she was released from the NICU.

Then on St. Patrick's Day, she was diagnosed with her heart defect.  I decided then to post my daily updates on the Children's hospital CarePages.  I kept this up through her open heart surgery and 2 month follow up with cardiology.  After we were given a clean bill of health, I decided we didn't need to keep updating on there because for medical purposes, Hailey was no longer "sick".

So....I started blogging.  It is an outlet for me.  A way to get feelings out and work through thoughts.  Some of our families read my blog, some friends and then some wonderful people I have met because we have something fabulous in common....our children sport designer genes.  I sometimes forget that I have family and friends reading my blog.  Sometimes it embarrasses me because I write things that I wouldn't always say outside.  I bare a part of my soul that I would otherwise hide to the world.  I hope that if that changes their opinion of me, that it is for the better :-)  I also use Hailey's blog as a journal.  To see how far our little girl has come...to see how far her family has come.

I also hope that through my blog, I might help change opinions of Down syndrome.  What it really is...what it really isn't.  My hope is also to help reassure any parent who has just received the diagnosis of DS or a heart defect, that life will be normal and wonderful!  Maybe even sooner than they expect!

The reason for it all

We've come a long way, baby!

St. Patrick's day.....leprechauns, shamrocks, gold coins, green eggs, green beer, green milkshakes, green clothes, Irish food, Irish pubs, green ketchup (saw that Burger King was doing this one!) and only in Cincinnati...green noodles for your Skyline chili...everyone acting like they have Irish heritage somewhere down the line.  All the things that people think of on St. Patrick's Day.....not me...not anymore.  I'm not sure I will ever look at St. Patrick's Day the same again....in our family...we think of my middle child (his middle name is Patrick) but we also think of Hailey and March 17, 2011.

It was one of the best and one of the worst days of my life.  The nurses and doctor's in the NICU said it was close to taking Hailey home.  She was getting stronger...she was gaining weight...it was time for me to start watching the mandatory DVD's before they released her.  I had suddenly became very superstitious and I wouldn't watch them until the day before...I didn't want to jinx her homecoming.  I watched the movies but I also took home paperwork that scared me to the core.  It was directions and a map for Children's hospital.  They were releasing her but we couldn't go home to celebrate just yet...we had to go straight to Children's to have an echo done on her heart.

This is the little peanut the last night I left her at the hospital...I was so happy and so incredibly scared.

The night before, we spent the evening with the boys as we had the last couple of weeks.  They asked how Hailey was, we showed pics and then we asked how their day was.  They asked if she was coming home soon...we didn't answer.  We couldn't.  We knew she was leaving the NICU but that is all we knew.  There was so much unknown.  The neonatologist told us there was a slight change the cardiologist would send us straight to admission and she wouldn't come home that day.  As much as it broke my heart, I couldn't break the hearts of the two big brothers that wanted their family together...we couldn't disappoint them that way.

St. Patrick's Day, Brayden headed to school and Ian headed to our friend's house.  To them, it was a normal day...well the normal they knew now.  Jason and I drove to the hospital...nervous, butterflies in our stomachs.  We had the carseat installed in the car (I wouldn't do it until I knew she was coming home....I just couldn't set myself up for that disappointment).  We brought the NICU staff a "thank-you" cake and hugged them all.  They had seen us through some rough nights and days over the previous 3 weeks.  They watched us get over the shock of her diagnosis...they talked to us about experiences they have had.  They loved that little girl...they rocked her...they sang to her...they fought over her.  She was an easy baby.  She never cried...she wasn't critical.  She was just taking some time getting bigger and getting stronger.  We said our good-byes...mom shed her tears.  These women were my support system...I now was in charge of this tiny thing without the monitors and nurses I had leaned on...depended on.

The drive to Children's hospital seemed long that day...it was only 20 minutes away.  It seemed foreign...huge...unimaginable...like walking the green mile.  You see, I don't like the unknown....I don't like the uncontrollable...this was both.  We maneuvered ourselves and our tiny little pink bundle through the parking garage and the maze of buildings to the Heart Institute.  We checked in and then were called back.  It is a very on-time...stick to schedule group.  She was weighed, measured, EKG, pulse ox....we were now accustomed to this new vocabulary.  It was time for the echo.  I think that was a grueling 90 minutes....the fellow that conducted the echo did not speak good English and for working in a children's hospital, seemed very nervous about dealing with newborns.  My poor baby was only wearing a diaper and he didn't even cover the exposed parts of her body.  I'm surprised she didn't freeze!  We watched as he moved the wand around her chest and tapped the keyboard and watched the screen.  I didn't understand what the colors on the screen were so I tried not to look at it.  I tried to daydream but it didn't work.  He was finally finished...he stood up and left...not a word to either of us.  The nurses then moved us to a new room and we waited.  A few minutes later two doctors entered...another fellow and Hailey's cardiologist.  There wasn't much chit chat...they jumped right into it.  There was a diagram of a heart on a dry erase board.  "Your daughter does have a heart defect...we are quite certain it will need surgery to repair".  I was glad I was sitting....I sat there staring at Hailey.  How could it be?  Why her?  Hasn't she been through enough?  Won't she go through enough with just DS?  The questions raced through my mind like they had so many times in the past 19 days.  I have to admit, the fellow that was working that day was fabulous...he was confident, he was poised, he was personable.  I left there scared to death but reassured that they would fix it and she would be okay.  My husband took it worse.  He was more scared and more worried.  Don't get me wrong...I was worried...I was scared but I was calm.  I was more worried about taking her home and not seeing the signs of heart failure...I was worried at the moment about the in-between time...worried about waiting for her surgery.  When would it be...how big would she be...will she be okay in the meantime...how sick will she get before her surgery?

We headed home.  It was beautiful day and the boys were outside with their friends.  We went home...we celebrated  For the first time...we were a family of 5!  We were all home together!  It was the best feeling in the world.  We didn't tell them about DS and we didn't talk about her heart.  I didn't want to dampen the feelings of joy they had at that moment...we didn't have to be separated anymore.  All was well in our little world for the moment.

I didn't want to take away these smiles, just yet.

St. Patrick's Day last year was definitely bittersweet.  I wish I could go back and talk to myself then....to tell myself that it would be okay.  She would rock that surgery!  She would get stronger...we would be okay.  To enjoy the moments in between then and her surgery.  Oh well....I can't go back.  We made it through it....but I will never forget it....

Look how far we've come....

That beautiful smile!

Mom, what's up with all this green?

You know...I'm not fond of the headbands!

Such good big brothers!

They still love this little girl!!!  Who needs luck of the Irish when I have these 3?