Support Groups and Other Stuff

It's me, Grace, again.  Because Double Inlet Left Ventricle (DILV) is very rare, Dave and I wanted to find people who have experienced or who have children with congenital heart defects (CHD).  Mended Little Hearts of Dallas was recommended to me by my friend Susanna as a place to find support, so it's good to know that there are functions we can attend to connect in person with parents of children with CHD; but I still had not connected with anyone with our child's particular heart anomaly.  I had started reading Fox News reporter Bret Baier's book, _Special Heart: A Journey of Faith, Hope, Courage, and Love_.  It could not have come at a more timely moment.  A few days after we received the diagnosis, someone posted about it on my Facebook wall.  It is a story about Bret's life, and I enjoyed reading about how he got a start in his career, his courtship with his now wife (the laundry story I found particularly amusing), but I couldn't wait to get to the chapter where I would find out more about his son's heart defect.  It was particularly devastating for Bret and his wife because they found out only after their child was delivered that their son, Paulie, had a heart anomaly.  I can't imagine delivering a baby and thinking everything is okay just to have a doctor tell me that my child would need open heart surgery to save his life.  We have the luxury of knowing ahead of time, thanks to a competent sonogram technician at the Plano Women's Healthcare at the Medical Center of Plano, and my obstretician, Dr. Heather Bellanger-Licker, who noticed something was wrong with our baby Brent's heart, so we have time to prepare ourselves mentally for what may lay ahead.  So, I am thankful for that.

But still, Paulie's heart anomaly was not exactly what our son, Brent, has.  Bret's son has Double Outlet Right Ventricle, and his son's blood was actually pumping in the wrong direction.  That in and of itself is scary to think the blood is flowing the wrong way, but I still wanted to find others whose child shared the same anomaly as our son Brent.  Brent has Double Inlet Left Ventricle, transposition of the great artieries (TGA), and ventricular septal defect (VSD).

Yesterday, David found a closed group on Facebook called "Children With Congenital Heart Defects."  There are more than 3,000 members, and I have already met several parents whose children have DILV!  I know I shouldn't be excited to find other parents whose children have this defect, but as one member said, "It's nice knowing that you're not alone."  There are other people out there that are going through the exact same thing.  Now I appreciate all my doctors - they have a vast knowledge about the diseases, surgeries, and procedures in their fields, and the ones that I have chosen are all board certified (I chose them carefully), but there is just something about listening to someone whose child has gone through this and connecting with them.  When these people tell their stories, I listen attentively because I know that they have experienced the surgeries and all the emotion firsthand.  Doctors are very good at hiding their emotions, although I have felt empathy from some of them already, which is much appreciated.

While in this group, I have learned a very important acronym.  I kept seeing people post about an 'OHS' and that their child has had several.  Wondering if my child would have to have that, I posted, "I'm sorry about my ignorance; I just found out my son had a CHD, DILV, and will have to have several surgeries.  I was wondering if my son will also have an 'OHS'.  Can you all tell me what that stands for?"  Boy, did I feel dumb when they told me it stood for 'open heart surgery'.  Yes, my son will be having at least two of those!


Now the other 'stuff' that is happening to me: spider veins and varicose veins.  I didn't have these with my three other pregnancies (although I developed some spider veins after my third child was born), but boy, does it hurt to feel the rush of blood flood down my right leg when I get up in the morning!  I finally got a prescription from my doctor for compression stockings and they cost a whopping $140.  "Insurance should cover some of that," the doctor said.  So, I'm going to call our insurance up to see how much they cover.  Meanwhile, my loving husband told me, after I had lamented to him about swimming with unsightly veins (I remedied that by purchasing surf capris, but ended up getting a weird-looking farmer's tan!), "Babe, we are getting older and our bodies are going to wear down.  But we will always love each other."  That is commitment, and I would rather have this kind of love than a fleeting, lustful love that only stays with good looks.  And this is why I love this man!  Dave is my rock, my constant companion, my lover, my researcher, my best support after leaning on God.  I am so thankful that Dave is the one going through this journey with me.

 

 ************

By the way, ladies, if you are suffering from unsightly veins and would like to cover up when swimming, I purchased these surf capris here http://www.paddlesurfwarehouse.com/Roxy-Up-Wind-Neoprene-Capri-Pants-p/roxyupwindcapri.htm