Uncategorized

CHD Awareness Month

One of the best friends I’ve ever had was a girl named Melissa. She and I spent endless hours with each other during 8th grade. This was the year right after my father had passed away, and having a close friend like her was crucial. She made one of the toughest times of my life bearable.   We were able to connect a couple of years ago over Facebook, where we’ve been checking in from time to time.  Last year she came to me with her story. She was pregnant, and her daughter had serious heart issues. For Congenital Heart Disease Awareness Month, I asked her to share their story here. You can read more at Here Comes the Sun, where Melissa keeps a blog to keep all who love her and her beautiful family up to date on the latest with her daughter.

Ali_Bug[1]

CHD Awareness Month

To honor the month of February as the month of Congenital Heart Disease  Awareness I wanted to share my daughter’s story and our experience with CHD.

It was this very month, one year ago that our family’s heart story began.  I was 20 weeks pregnant when I first learned about CHD and that the baby girl I was carrying had a very special little heart.  Alessandra (we call her Ali) was diagnosed prenatally with having heterotaxy syndrome, dextrocardia, single ventricle, atrioventricular septal defect (AVSD), pulmonary stenosis, two superior vena cavas, and some abnormal positions of her pulmonary veins. It’s quite a mouthful, but to summarize: her heart has one pumping chamber instead of four.  The single chamber mixes the oxygen rich blood with the oxygen poor blood driving down her body’s overall oxygen levels.  There is no cure for this and her heart can never be “fixed.”

Carrying Forward

Receiving this prognosis prenatally gave us some advantage.  We were able to get cardiology on board, prepare for a specific birth plan as well as personally come to terms with the challenging road ahead.  The funny thing about that is no matter how prepared we thought we were, it was all just a leap of faith.  There is simply not enough information and research to support a solid medical plan for kids like Ali.  But what can we do? We have to try.  After Ali’s birth we went home after a few days of observation in the NICU.  She thrived! She fed well, her O2 saturation was acceptable and her heart function was strong.  We learned a few new things about her anatomy after her birth: she is asplenic (missing a spleen) and has malrotated intestines.  Her asplenia requires antibioics twice a day, a prophylactic measure to protect against infection.  Her intestines are a non-issue for now since she can still digest food, but may require surgery down the road.

Her First Surgery

At 4 months of age, Ali started to show signs of heart failure.  Her 02 saturation were low, her lips were bluish and anytime she got upset her entire body would turn purple.  She was telling us that she was ready for heart surgery.  On November 19th we let the surgical team take our daughter back to the operating room for her first heart surgery, the Glenn Procedure.  Now, since her heart defects cannot be “fixed” the next best thing is to re-route her plumbing to improve her circulatory system in a way that is most efficient. I will never forget how beautiful she looked right after surgery. She was intubated, hooked up to 90 million different machines but she was pink! The surgery was successful and we went home with a brand new baby a few weeks later.

The Way Heart Kids Roll

Alessandra is full of surprises. Once we get over one hurdle, there seems to always be another around the corner. It has taught my husband and I to never let our guard down.  Currently, we sit in the CVICU once again as Alessandra recovers from her second surgery, her thoracic duct ligation.  So far, this procedure proves to be more trying than her heart operation.  Her lungs are swollen making it difficult for her to oxygenate.  Right now she is intubated and heavily sedated.  I know this is temporary and she will persevere.  She is such a strong little heart warrior and will be back to her silly self in no time.  Alessandra has a bright purpose and we will do everything to support and carry her forward.

_______________________

Lexi’s Note:  I was going to add a link to one of the many wonderful organizations out that work to help families like Melissa’s. After hearing the latest news of Ali’s turn for the worse, I’ve decided to make a Chipin for the family instead.  As anyone who’s spent time in the hospital knows, that even if you have great insurance, the copays suck, and even more than that, living out of the hospital means living on takeout, which is expensive.  If you’d buy my friend a Starbucks to help her through her day at the hospital, please consider chipping in. It all goes directly to the family, every little bit helps, I know this from experience.  She’d never ask, because she’s like that, but I will.

I’m also forcing her to put up the widget on her blog.

 

Ali’s Heart ChipIn Fund

 

Thanks guys,

Lexi

10 thoughts on “CHD Awareness Month

  1. Go Ali! I have a cousin whose child has been going through a lot of what you describe. He’s a little older than Ali though. She sounds tough as nails and is definitely pretty as a princess.

    Like

  2. What a beautiful little girl. I’m so sorry for all the challenges she and her family have faced already.

    As the parent of a child who also has/had (they never really go away!) CHDs and spent a long time in the hospital, I can relate to the exhaustion and the constant state of heightened anxiety and worry. I wish I had had friends like you, Lexi, back then to lift me up and to hold my hand through it.

    I’m not in a position to offer any financial support, but I will keep them in my thoughts and in my prayers. I hope those who can help do…it can make a world of difference.

    Even better, if there are friends nearby who can make sure Melissa and her husband both get a chance to laugh, share a meal, get hugs…the contact is invaluable. We didn’t have much and I think it would have made a world of difference for our state of mind during all those long months.

    Wishing Ali, Melissa and the entire family all the best.

    Like

  3. She is beautiful! I completely understand the hospital journey. My son had three heart surgeries and spent his first three months of life in the hospital. He passed away almost two years ago but his legacy lives on through a pulse ox bill here in WV. I will share this and help spread your daughter’s story!

    Like

    1. Thank you, Ruth. I’m so sorry for your loss. I couldn’t even begin to imagine. I’m sure Melissa would love it if you visited her blog, too. I only know a tiny bit of the fear with heart issues, as my Abby only has a small ASD.
      Thinking of you this month, too.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s